Tag Archives: fibromyalgia

How I found purpose in life living with fibromyalgia – My story!

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When we live with fibromyalgia ( or any chronic condition) we may eventually question ourselves to how can we find purpose to life. What is the purpose in life if we are constantly in pain, extremely fatigued to be productive or struggling with other symptoms of the illness? How does one find purpose in life when even simple tasks such as showering becomes daunting and drain us mentally and physically? We often attribute purpose to our career. When we work, we have daily purpose. What happens to that purpose when we can no longer work?

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Before my fibromyalgia diagnosis, you could find me working either as an educational assistant (EA), community disability worker or early childhood educator. I based all my college training around these three jobs – certified to work as an EA, level two early childhood and had taken many training courses as a disability worker. I also had all my training completed to work as a mental health rehabilitation worker. As you can see, I based my education around supporting others around me. Reality is – I probably won’t be able to return to any of these work settings as they are too demanding for my body to keep up. It is very difficult to learn to accept this. Reality is – you have to learn to accept this as your new reality and move forward. Are there days that I find myself still angry that I can no longer work in any of these fields? YES! Is it ok to feel angry, disappointed and discouraged? YES! Does it make me a weak person for not being able to return to these jobs? NO! Even though some days I do feel that it does make me weak. 

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I recently ran into the parents of a client I used to support in the community I lived in years ago. Reminiscing about those days made me really begin to question what my purpose in life is living with fibromyalgia. I no longer have a career or job to see to daily as it became too much for me to handle shortly before I got diagnosed. I suppose I measured purpose in life by my career.

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A few weeks ago, I was discussing purpose of life with the psychologist I see regularly. I shared my frustrations and we had a discussion about purpose. I was reminded that there are other ways to find purpose in life – even through hobbies. I thought I had grieved the loss of my career years ago – however what we often forget is that one can return to any stage of grief at anytime. Grief is not a one way street.

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A conversation I had with a very wise lady ( also a life coach) said to me months ago – ” What if you haven’t lost yourself or your purpose in life!? What if you are only just realizing who you are now. The person you were before fibromyalgia may not of been who you were meant to be and you are just finding that out now.” It is a true statement, because as our lives change over the years ( even without a chronic illness) our purpose in life will alter and change. Our experiences and goals will alter our purpose. I had mentioned that I had begun blogging about my fibromyalgia journey. “What if you were meant to be a blogger all this time? You are helping more people blogging than you do in a year working in a classroom as an EA!” I can’t disagree with that statement – my blog has gone worldwide – many followers make time daily to stop into “my world” to see what I have posted. In 2022, my blog posts were viewed over 50.2K times. I was shocked at my year in review stats I received January 1, 2024! I had also submitted my blog to be considered to be listed on the top 60 blogs for fibromyalgia and to my surprise it was accepted to be listed for high quality informative information. I am currently holding spot 23, but it changes position monthly depending on how many blog posts I release. Obviously the more I blog the higher on the list my blog is. Even though I am currently sitting at 23, I see this as an accomplishment as many of the bloggers listed on this site are highly known fibromyalgia advocates/ speakers or even doctors who treat fibromyalgia!

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In a way my blog could be considered a job even though it is not a “paid” position. Not only am I a blogger about fibromyalgia I have become an advocate and educator. When I began my blog in 2022, I was set out to help people with fibromyalgia worldwide not feel so alone and isolated. I write many educational blogs which help inform and educate people on fibromyalgia worldwide. My blogs are reshared over and over by people – I was hoping by educating people even without fibromyalgia the stigma of fibromyalgia may decrease even by a little bit. I do have many followers without fibromyalgia who are following and reading my blog to help understand and support a loved one or friend with fibromyalgia.

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I have slowly been working on writing a book on my fibromyalgia journey that I hope to eventually publish and sell. I am no where near being ready to publish it and it is in a very rough draft at the moment. Most is just jotted down and not even formed into sentences yet. It is a work in progress. I also attend many fibromyalgia online conferences and summits and often thought about possibly becoming a speaker/advocate at one of these summits. I did get approached shortly after starting my blog to be a speaker on a fibromyalgia podcast, however being new to the blogging world I was not confident enough in speaking live about my fibromyalgia journey. I was still learning to adjust to life with a chronic illness and struggling a lot myself. If approached again, I would possibly jump at the opportunity now! If it is meant to be, the opportunity will present itself again.

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For a lot of us with fibromyalgia, it becomes so overwhelming when we don’t feel like our life has meaning. Our purpose doesn’t have to be big and grand. For those of you who follow my Fibrofighter’s Facebook page, you may even leave a comment that might help pull someone out of a depression. You may find yourself offering an ear to just listen to someone vent through a messege – that gives you purpose.

Fibromyalgia – It is okay to not be okay…It does not make you weak!

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I saw the above picture being shared over and over on many chronic illness/pain and fibromyalgia communities. I often share my belief that it is okay to have days where your chronic condition wins. Trying to find relief and battling our own bodies day in and day out can be exhausting in itself. I am definitely struggling with this lately myself. How do we keep pushing forward when there is no cure for fibromyalgia? Some days I wonder how I do it myself – reality…we are not given a choice. However, it can become very discouraging and daunting at times.

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I was recently scrolling through a fibromyalgia advocate’s Facebook page and came across a few facts about fibromyalgia. I am unsure where these stats came from, but from a 2021 post she shared… “Of the currently available medication treatment for fibromyalgia, only 40% of those with this medical condition find mild to moderate relief of their symptoms.” To put this into further perspective that means out of 22,200,000 people world-wide with fibromyalgia only 8,800,000 find any relief! That leaves 13,320,000 million with fibromyalgia with NO relief at all for their symptoms. I am sure the stats read a bit different now as we are nearing the end of 2023 and these stats were from 2021 – however the point is so many people world-wide are left without relief. No break from fibromyalgia.

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I am one of those 13,320,000 people with fibromyalgia who has found little to no relief from many of the symptoms. I have tried many different strategies to try to diminish symptoms and improve my overall quality of life. I think health care providers often forget that pain and fatigue are not the only symptoms we suffer head on from fibromyalgia. Did you know fibromyalgia has over 300 possible symptoms? Yes! You read that right. Most likely a person won’t ever have 300 of the symptoms at one time ( or even develop all 300) – but many symptoms begin to pile up on top of one another and we are left scrambling to remedy these symptoms (without much guidance). The pain and fatigue is enough to deal with on their own. I’ve once noted over 50 fibromyalgia symptoms in one day. It is near impossible to try to even diminish 50 symptoms at a time! These are the days I allow my chronic condition to win. These are the days I shut the world out and sleep my day away because trying to remain put together and functionable are just not realistic goals. If you haven’t already read my blog post about how having a chronic illness/condition can become a full time job, you can read it here!

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I often say that fibromyalgia will not win nor define who I am, but lately I feel like it has won. Some days I feel like I am wasting what little energy I do have on trialing and erroring different strategies to maintain fibromyalgia – in most cases the strategies back fire and I find myself bed ridden for days on end. Some days I stop and wonder if I should just enjoy the good days instead of worrying about making sure I add in exercise or another management strategy because that is what the medical system expects. Maybe instead – I should be out having lunch or having a coffee with a friend. Many of us who live with fibromyalgia feel like we are just existing and not really living anymore.

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For those of you reading this who do not have fibromyalgia – experts state that in order to understand the severity of chronic fatigue alone that fibromyalgia can create – you must stay awake for three consecutive days. 72 hours without sleep and continue on with your daily routines. Signs of sleep deprivation set in after 24 hours of no sleep and become evident to people around you. Here is a fact: after staying awake for 24 hours similar cognitive effects of a blood alcohol level of .10% begin to take place. That is actually higher than the legal blood alcohol level to drive! Sure puts things into perspective. Here is a breakdown of what happens to ones body after 72 hours of no sleep.

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Usually I write to inspire and encourage everyone who reads my blog posts. However today’s blog I decided to write realistically and from the heart. After all a blog is meant to be realistic and personal. I am sure many of you reading this can relate 100% to being so discouraged at times. Negative thinking takes over and it is difficult to pull ourselves out of this cycle. I always say – it is okay to have bad days – just don’t unpack and live there! Gentle hugs to all who need it. Don’t forget – no matter how bad of a day you have or situation there is always something yo be grateful for ( no matter how small it is).

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Fall Weather – The struggle is real! My personal story!

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Living with fibromyalgia we learn quickly how unpredictable the condition and its symptoms can be. We learn how to manipulate and change our surrounds and routines to avoid certain symptoms from spiraling out of control. However, what happens when we can’t prevent said symptoms from arising or becoming worse?? If you have fibromyalgia you know too well what I mean by this comment. For those of you reading this who do not live with the daily struggle of chronic pain you may be wondering how one can’t possibly control their symptoms.

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For myself as summer changes to fall weather – my fibromyalgia symptoms go out of control and no matter what steps I take to prevent this from happening , it happens. The extreme fatigue appeared like clock work – the beginning of October the fatigue showed up full force. By 6 pm every evening I am barely able to keep my eyes open. I am even finding myself sleeping in past 7 am every morning ( which is not normal for me). This cycle has been consistent since my fibromyalgia diagnosis. As fall turns into winter weather, the fatigue sets in even further. The last few weeks all my body wants is to sleep all day long – even though the acquired sleep does not leave my body feeling any more refreshed. I am absolutely exhausted. Exhausted from battling the exhaustion! I try not to allow myself to sleep all day, as we all know it is not exactly a healthy habit to form. However, as my body transitions to the winter weather I allow myself to rest more. This was a learning curve for me over the years as if I do not allow my body to rest, the more intense my fibromyalgia gets. I don’t consider the added rest as a failure to control my fibromyalgia, or allow my mind to convince myself I am lazy anymore. I have simply come to terms with this is what my body needs at this moment – to rest. Eventually the fatigue eases a bit to the point where I don’t feel the need to sleep all day.

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Lets talk about pain levels…

For those of us with fibromyalgia most of us can agree that we are never totally pain free. Even on days when I say my pain levels are lower, I still feel a degree of pain. A degree of pain that I can still function enough to get a few chores done around the house. However again the summer to fall/winter weather aggravates my pain. The intensity increases the cooler the weather gets. The last week has been a very trying week. A week of unpredictable fluctuating pain. Head to toe pain that feels like my bones are being drilled into. For the ladies out there with long hair ( or the males who may have long hair) – you know that feeling you get when you have worn your hair up in a ponytail for so long and then you try to brush your hair and your scalp hurts?! I often describe this as my hair hurts. What really causes the pain – the hair has been compressed so tight in the ponytail that it has caused the nerves in our scalp and under our hair follicles to become sensitive and aggravated. Seriously though it is called ponytail headache and is considered a form of allodynia. People with fibromyalgia experience allodynia which is pain due to a stimulus that does not normally create pain. This is how I explain how my entire body feels every fall.

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It took me a long time to accept the fact that weather is one of my biggest flare up triggers. Weather is one aspect we have no control over. What I can change is my attitude towards the increased pain/fatigue levels and how I cope through these challenging times. It is definitely a learning curve. What I have learned is to be gentler with myself during season changes and weather that triggers my pain levels. Do I still get annoyed, discouraged and even angry at times – YES. After all I am only human. What I have allowed myself to feel these emotions and pick myself back up and carry on with life. After all – what more can a person do when living with a chronic condition. Some days are harder to pick myself back up, but giving up and allowing fibromyalgia to win is not an option. Stay strong fibrofighters. Remember to be kind to yourself! Gentle hugs to you all.

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Don’t disregard medication side effects if you don’t experience any at the beginning – What I have learned on my journey!

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Just when I thought I had fibromyalgia figured out, my body decides to throw another curve ball and I am left trying to find that path I swayed from.

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At the beginning of my fibromyalgia journey ( 2019) I trialed and errored different medications used to help lower the pain levels that comes with fibromyalgia. After several months, I finally found one medication with minimal side effects. It lowered the intensity of the pain immensely. I even found a sleeping medication that was able to be used nightly with low chances of addiction and dependence. I’ve remained on this regiment for years. A few medication dosage adjustments were needed over time to both medications ( to be expected).

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What I forgot to take note of is with higher dosages comes more changes of having side effects from the medications. We often start on lower doses and work our way up to higher doses. Our bodies tend to build up a tolerance to medications. As a result, a higher dose is required to achieve the same results as before. I wish I had paid closer attention to the listed side effects of each of my medication at every dose increase. Instead I never even gave the medication side effects another thought as I never experienced any side effects at lower dosages.

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Two months ago I developed extremely debilitating insomnia. I often have pain wake me up through the night, but I would re-adjust sleeping positions and fall back to sleep before. In July I began having chronic insomnia. I would fall asleep and be awake within an hour of taking my sleeping pill. There was no getting back to sleep. Sadly my doctor was on holidays at the time and to have a doctor who does not know your file make adjustments doesn’t usually result well. In fact, many doctors do not want to take on medication adjustments unless they know you.

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My sleeping pill also stopped working. My doctor did one final increase on my dosage – with no change to how I was sleeping. I am slowly tapering off this sleeping pill and a new sleeping pill was added. Since the new sleeping pill, I have been getting seven consecutive hours of sleep a night. I had forgotten what sleep felt like. While my doctor was on holidays I had started digging deeper on possible side effects. Nausea, diarrhea, blurred vision, headaches, muscle aches/pain were some of the noted side effects – all of which I have been experiencing. Now some of the side effects over-lap fibromyalgia symptoms making it even harder to distinguish the difference.

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Here is the dilemma…

I started doing more research on my medications. Sure enough my medication which I take for pain management, has a side effect of insomnia. If fact it stated that insomnia is one of the main side effects! At lower dosages I did not have insomnia as a side effect, but after two dosage increases insomnia hit hard. One to two hours of sleep for two months led to sleep deprivation. Now is my pain medication really causing insomnia or was it my sleeping pill just became ineffective causing me not to sleep? I was supposed to begin to taper off this medication this week, but now I am not so sure this is the best decision. It is also a very difficult medication to taper off of with alot of with-drawl symptoms and brain zaps! I recently joined a Facebook support group on this medication and alot of people are having the exact same issues as me while using this medication. Again, when I first started using this medication very low side effects. As the dose went up, I noticed more and more symptoms arose.

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Have you had a similar experience? Please share your story with me if you have and feel comfortable doing so. What I have learned is, tapering off medications is a slow process. Please work with your doctor/pharmacist if you are tapering off of your medications. I am being monitored weekly by my doctor and have contacted a pharmacist several times since the tapering process has started.

Should I continue to work once diagnosed with fibromyalgia? How I made the difficult decision….

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People who are diagnosed with fibromyalgia eventually find themselves asking the question,” Should I continue to work?” Debating whether it is appropriate to stop working due to fibromyalgia can be a very confusing time. Not everyone is able to stop working and they continue to push themselves through their shifts day by day. Here is a shout out to all of you who have managed to stay working ! Everyone will have to make the decision to continue to work or resign due to medical reasons. You must do what is right for you and your circumstances.

For myself, I tried to take a month off from work thinking I could quickly learn to manage fibromyalgia. I soon realized, it wasn’t as simple as it seemed. As the weeks went on, new symptoms arose and intensity levels changed. Just as I thought I had my symptoms under control, a new symptom would appear or the ugly cycle of chronic pain would begin over and I was back to square one.

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According to “experts”, people with fibromyalgia should remain working. Researchers state that people with fibromyalgia who continue to work tend to feel less pain and fatigue. I totally disagree with this statement. I believe it depends on the severity of your fibromyalgia. Obviously if a person has mild symptoms it may be a bit easier to continue to work. Symptoms are easier to manage when they are mild. For myself, I was the complete opposite. My symptoms were mot considered mild but severe. I tried to continue working and it did not improve my fatigue levels or pain levels. It intensified both symptoms to the point I could not function. I pushed through for several weeks until I just couldn’t push anymore and found myself requesting time off of work from the doctor.

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I made the hard decision to not return to work for several reasons. Maybe my reasons will help you make your own decision.

The fatigue began to set in severely. I found that by the time I got out of bed, ate breakfast packed lunch and drove to work ( fifteen minutes down a busy highway), I would pull into the school parking lot feeling like I “pulled an all nighter.” The fatigue got so intense that I caught myself falling asleep at work. Not the safest when you are in charge of a group of students or one on one with a student who needed high supervision due to safety concerns. The day I almost dozed off behind the wheel driving to work, was the day I knew I no longer could work.

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The unpredictable widespread pain played a factor in remaining off of work. At first the pain was only in my fingers, elbows and knees. It quickly turned into widespread pain that jumped locations every five seconds. Who knew pain could strike every part of the body at once?! I found out what this felt like. Trying to work with chronic unpredictable pain makes it near impossible. Here is an example. Ever try to go to work with a migraine before? Imagine the throbbing/pulsating pain you felt with that migraine. Now imagine the pain three times worse. Yes, people with fibromyalgia often feel pain three times more then what people without fibromyalgia feel. I don’t know about you, but having such intense pain affected my overall ability to function. I began to feel emotionally exhausted as well as physically exhausted from the pain itself.

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Brain fog began to clutter my thoughts. I started having problems understanding grade three school curriculum. This confused me as before I was working in a junior high school in grades seven to nine- which has more complex information to process! I was able to explain algebra to students in grade eight, but yet I could not explain a 3D shape to a small group in grade three. I found myself stumbling over reading simple sentences to students on a test, or explaining instructions backwards to worksheets. I was hired to help support students, not hinder their learning.

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Some people with fibromyalgia can work with modifications to the work environment or find a job that is less demanding to allow them to continue to work. For myself, being an educational assistant in a school working with special needs students, I was not able to modify my work load or schedule. Obviously my schedule followed the students school schedule.

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I never did try to return back to any job as the symptoms got worse as the years went by. At first I had improvement once I started on a medication to help manage the pain, but the fatigue set in deeper. My doctor explained to me that I had hit a plateau in my “recovery”. A new level of exhaustion was felt. I began having trouble mustering up enough energy to shower, felt like my shin muscles in my legs were being torn from my body walking up a few steps and I began to get daily sore throats and fevers. When the fever begins I feel like I have been hit by the worlds worst flu bug. I began battling my own body each day and unsure of what tomorrow would bring.

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As the saying goes , “You can’t pour from an empty cup. Take care of yourself first!” In the end I decided that if I couldn’t take care of myself and my basic needs first, how was I going to support students in a classroom? It just doesn’t work that way. If you are finding yourself in the same position, I would encourage you to weight the pros and cons of leaving the workplace. All the best! Hope my reasoning may help you make the tough decision!

Clinical Hypnosis and Fibromyalgia ( or any chronic pain disorders) Does hypnotherapy work to lower chronic pain?

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When most of us think about hypnosis our minds often wander to watching someone get hypnotized on stage and running around barking like a dog or clucking like a chicken. This is known as stage hypnosis. The hypnosis therapy I am referring to is clinical hypnosis. It is very different then stage hypnosis and has many benefits.

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A bit of a personal story before I get into what hypnotherapy is and the benefits…

In January (2023) , I began seeing a psychologist ( I will call her T. in my blogs) who is trained to understand chronic pain and to perform clinical hypnosis on clients she works with. She had introduced me to a self hypnosis video early on for chronic pain. I won’t lie, I probably tried not to roll my eyes when she told me she was going to send me the link to this video. ( Haha. Sorry T. for any eye rolls you may have witnessed). I’ve had very negative experiences with previous mental health counsellors and psychologists in my fibromyalgia journey that I found it difficult starting with a new psychologist without being sarcastic and defensive. I was used to having to defend myself and the guidance was not the best. “You are on the right track.” ” I can’t see you anymore, because you are too negative.” are two comments that stand out in my mind when I think back. I often thought to myself if I was on the right track I wouldn’t be sitting in your office. I always thought a psychologist was there to help a person work through the negativity and look at situations in a different way to help lower negativity. Although I do not think I was being negative simply by stating, “I feel like there is no program here for me at the pain clinic due to sitting on waiting lists for 6 months.” I know it was a lack of knowledge on chronic pain and fibromyalgia. However lack of knowledge should not result in comments that make the patient feel belittled and leaving the office crying. I began having anxiety attacks the night before when I saw the previous therapists, which then resulted in fibromyalgia flares. The one therapist I decided to walk away from treatment, but the other one had been set up by insurance disability and I was not allowed to walk away.

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After several appointments and building rapport, I decided to allow T. to perform a hypnosis on me during my appointment. In order for hypnosis to actually work, one must feel comfortable enough with the clinician. The first session I was extremely nervous and felt uneasy because I didn’t know what to expect. T. reassured me that I would be aware of everything going on and that she can’t make me do anything I didn’t want to do while being hypnotized.

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To my surprise the hypnosis was very relaxing and calming. She picked the perfect hypnosis script to use that I was able to resonate with. I can’t really reflect on whether it changed my pain levels as we only did one session with a script. I’m looking forward to trying more hypnosis sessions to see how my body reacts to the therapy. My goals are to help use it to lower pain levels, maybe see improvement in sleep quality and help keep my anxiety at bay. Maybe along the way other symptoms may diminish. Even the self hypnosis video helped me get into a deep state of relaxation. I often fall asleep while listening to this video. You can find this video here. It is geared towards chronic pain. There are many different self hypnosis videos on Youtube. I’ve tried different versions and always come back to the same one.

I decided I wanted to explore the hypnosis more, however hypnosis got put on hold for several months as I ended up needing talk therapy more at that given time. Now back on track, my next appointment we will step back into hypnosis sessions.

Quick run down on hypnosis…

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Hypnosis is a strategy that is used to help people enter a deep state of relaxation and focused concentration. For myself I find hypnosis easier then meditation. While in the deep relaxation, it is said that one is more open to suggestions a clinician may make to help improve your health. The clinician will use guided cues, repitition and imagery to help you enter into this state of relaxation. Remember, you remain aware of what is going on around you at all times. Hypnosis accesses your subconscious mind.

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Success rates with hypnotherapy is higher then other methods of treatment used by psychologists. . Hypnotherapy has a 93% success rate! That is a pretty high success rate in my opinion. Less sessions seem to be needed when hypnotherapy is used. Studies reveal that more than 75% of people with arthritis and related pain conditions – have pain relief after using hypnotherapy. If hypnotherapy can help lower arthritis pain why can’t it help fibromyalgia pain? Both are chronic pain conditions. I found this website with a ton of studies done on hypnotherapy. There are too many studies to begin to discuss in my blog. Here is the link to these studies.

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Benefits of hypnotherapy on chronic pain

1. Known to help lower chronic pain levels.

2. Helps lower stress levels.

3. Helps lower depression and anxiety.

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4. A study revealed people who use hypnosis for fibromyalgia reported 80% fewer painful episodes versus people who did not use hypnosis. Wouldn’t it be wonderful for symptoms to possibly diminish up to 80%??

5. Hypnosis can enhance quality of sleep. As we know lack of sleep causes fibromyalgia symptoms to be worse.

6. Hypnosis is said to influence the autonomic nervous system. it helps regulate the autonomic nervous system. Thus, allowing people to control their symptoms better.

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There are many more benefits to clinical hypnosis, but these are the ones that stood out when I did my research on hypnosis. One must keep an open mind when starting hypnosis and trust the process. It may awkward at first. Allow the process to happen. After all, what have you got to lose? Hypnosis doesn’t always work on everyone, but you won’t know until you try. I am learning, the mind is a very powerful, with the right guidance. I will write a blog later on reflecting on consistent hypnosis sessions and how my body responded.

Here are a few websites on hypnosis

  1. https://www.mayoclinic.org/tests-procedures/hypnosis/about/pac-20394405
  2. https://my.clevelandclinic.org/health/treatments/22676-hypnosis

Hyperbaric Oxygen Therapy and Fibromyalgia.

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Over the last six months I have been doing a lot of reading about hyperbaric oxygen therapy (HBOT) being used to treat fibromyalgia. You are probably wondering what hyperbaric oxygen therapy is… here is a quick run down on the concept. HBOT involves breathing 100% pure oxygen in a hyperbaric chamber. While in the chamber the air pressure is raised to a higher than normal pressure level. Raising the air pressure in the chamber allows a person’s lungs to collect more oxygen. Normal air we breath only consists of 21% oxygen levels. Oxygen is necessary for our body’s tissues to function. Sooo… how does HBOT help fibromyalgia?!

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There have been many studies completed on HBOT and fibromyalgia. A 2015 clinical study was conducted to determine if hyperbaric oxygen therapy can diminish fibromyalgia symptoms. Patients were evaluated at baseline ( before HBOT treatments), after a control period of no treatment and after HBOT treatments. Each individual was evaluated physically which included tender points and pain threshold, evaluations on quality of life and SPECT scan which evaluated brain activity. The study revealed that there had been improvements of all fibromyalgia symptoms and improvement in quality of life. The SPECT imaging revealed that the brain’s hyperactivity in areas of the brain decreased in pain related areas of fibromyalgia patients. Read about the study here.

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In 2022, 9 studies were compiled together for review to compare data on HBOT treatment on fibromyalgia. A total of 288 patients were included in this review. Again the results showed that HBOT could relieve the pain in fibromyalgia patients compared to the control intervention. The treatments helped improve tender points, fatigue, multidimensional function and sleep disturbances. Read the full study here.

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What are the benefits of hyperbaric oxygen therapy for fibromyalgia?

1. Known to lower chronic pain levels.

2. Known to diminish nerve pain.

3. Increases oxygen levels throughout the body, thus increasing blood flow to areas on the body.

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4. Has been shown to improve brain function and cognitive abilities.

5. Decreases inflammation and swelling.

6. Increases the body’s ability to fight toxins that can build up in cells and cause damage.

There may be many other benefits, but for my blog these are the ones I chose to list.

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There are also risks involved in using hyperbaric oxygen therapy.

1. Ear pressure or popping feeling in the ears due to higher air pressure in the chamber.

2. The therapy can cause lightheadedness and fatigue. These are normal side effects and should reside shortly after treatment.

3. Due to changes in air pressure treatment could possibly irritate the sinus. The pressure can cause the sinuses to become inflammed.

4. “Tooth squeeze” can result from the pressure changes. It can cause pain in the teeth.

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5. Eye pain and pressure. Research states therapy can cause possible change to the shape of the lens of the eye. These changes are temporary and rarely permanent.

More serious complications include

1. Lung damage

2. Ruptures middle ear. My research stated that this is more common due to the pressure.

3. Oxygen poisoning. There are specific directions to preventing this from happening. Prolonged exposure and very rare.

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The complications sound scary, but with proper protocols being followed, side effects are often short lived and begin to correct themselves after resting.

Read more about the possible complications here.

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Please note not everyone will be a match for hyperbaric oxygen therapy. Certain health issues or conditions make it too risky for therapy to take place. I won’t list all the conditions here as I do not know the entirety of the list. For example, many articles stated people with COPD should not use HBOT therapy.

Hyperbaric oxygen therapy is used for many other conditions. It is also known to slow dementia progression, help heal skin grafts, help recover from traumatic brain injuries and even improve carbon monoxide poisoning. It is no surprise that HBOT can possibly help fibromyalgia. If I was given the opportunity to try hyperbaric oxygen therapy I would – after all it is less invasive then adding more prescriptions.

Fibromyalgia and hearing loss. Another correlation found!

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Since I started conversing with people world-wide who live with fibromyalgia, an interesting topic in regards to associated coexisting issues keeps arising. I never had the answer or even heard complaints of this topic before – hearing loss. I thought to myself hearing loss can’t be yet another possible condition that coexists with fibromyalgia. To my surprise, it is possible to suffer from hearing loss from fibromyalgia!! According to researchers, a study revealed people with fibromyalgia are 4.5 times more likely to suffer from hearing loss then people without the illness! Visit here to try the online hearing test.

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A Norwegian study was conducted – 44, 494 people with fibromyalgia or other forms of musculoskeletal pain disorders participated. The study was set out to determine if there was a correlation between pain disorders and hearing loss could be established. A control group was also part of the study. The study never clarified possible causes of hearing loss with musculoskeletal pain disorders. I researched over and over and could not find any further explanations. The results revealed that individuals with fibromyalgia reported hearing loss compared to people without fibromyalgia or other musculoskeletal pain conditions. You can read about this study here.

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A more recent study was done in 2021. The study was much smaller, which included only 33 people with fibromyalgia and 33 healthy volunteers. Each individual underwent various testing on their hearing. The results of the study revealed pure-tone hearing thresholds of right and left ears were found to be decreased in those with fibromyalgia compared to the healthy individuals. Read about this study here.

These are just two studies completed. I found a few other studies which all seem to report hearing loss is prevalent among people with fibromyalgia.

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Another ear issue that can occur with fibromyalgia…

Tinnitus is also prevalent in those with fibromyalgia. If you do not know what tinnitus is – it is when a person hears ringing in their ears or other sounds that are not produced by external sounds. Other people around you will not hear the ringing sounds. A 2021 study revealed that fibromyalgia patients were more likely to suffer from tinnitus then those without fibromyalgia. 59.3% with fibromyalgia were found to have tinnitus and 7.7% of the control group ( without fibromyalgia). Another study also revealed that that patients with fibromyalgia and severe tinnitus had lower functional impairments and their overall quality of life was low then those without fibromyalgia.

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You can read about both studies here

1. https://pubmed.ncbi.nlm.nih.gov/35077079/

2. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10324957/

Tinnitus does not contribute to deafness, ( according to many websites I used while researching). However, other sites state it does contribute to hearing loss. I am getting mixed information, so I cannot state if it does or does not contribute to deafness. Either way, tinnitus can cause interference with your hearing.

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How accurate are pain scales? Do pain scales really gather relevant information?

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I was shuffling through my filing cabinet the other day organizing my files for fibromyalgia. As I reorganized papers, I soon realized how many different pain scale forms I have filled out over the years. I got wondering are these pain scales really as accurate as the scientific world perceives them to be? Are they a valuable tool for doctors across the globe? I never really stopped to think about it until now. Everyone perceives pain at differently.

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There is no exam/test that can be completed by health care providers that gives an accurate reading of what pain levels may be. Doctors, specialists and any other health care provider rely on the patient to self report about their pain type/severity/duration. During self reporting we are often given a pain scale and/or a survey to fill out. I often found these forms extremely difficult to fill out because describing pain is not an easy task. People with fibromyalgia experience many pains at different severities. Each body part might feel a different level of pain at the same time – making rating your current pain level out of 10 at the time in my opinion obsolete. I might state my pain levels are severe, but everyone perceives severe in a different way. Everyone’s definition of severe is different as well.

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Pain scales were created to help health care providers understand a person’s pain levels. With the pain scales, doctors are able to help guide individuals on how to possibly lower pain levels. Some pain scales gather basic information while other pain scales gather more context and details about pain levels.

Benefits of pain scales:

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1. Pain scales can help keep track of pain levels over time. This can be helpful for everyone involved in your treatment plan. Many of us with fibromyalgia know we are often passed back and forth between different providers as many don’t know how to guide us in finding relief. Having a pain scale log allows for new practitioners coming on board to get an idea where daily pain levels sit.

2. Pain scales are often quick and easy to fill out unless you are completing a more complex pain scale log/questionnaire.

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Disadvantages of a pain scales:

1. Pain scales are often labelled from 0-10. There are no explanations to these numbers. It would be easier if there would be explanations attached to these numbers to be able to rate our pain levels better. Everyone has a different pain tolerance making it hard to pick a number 0-10. What does 5/10 pain level actually entail? Its just a number.

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2. Pain scales often reflect only that – pain levels. They often don’t take into account how living with chronic pain changes our daily lives. I often wish this question would be added to the pain scale questionnaires. The pain scales also don’t document that pain levels fluctuate and that with activities most people experience heightened pain levels.

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3. Pain scales also do not take into consideration a person’s emotional state. Again, I think it is important to ask questions to include a person’s mental health. Our emotional state can also cause an increase of pain levels. Many people with chronic pain often have anxiety or depression. Both these conditions can exacerbate pain levels.

There may be many more advantages and disadvantages of pain scales, but the above listed are just my personal opinion.

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No matter what pain scale is used, the scales must provide health care providers with a baseline to begin treating chronic pain. For myself detailed questionnaires with various questions are more informative in my case. I might have minimal pain in my arms, but extreme pain in my legs. I rather be handed a questionnaire that allows me to answer questions about how the pain affects my daily life then one that asks to rate my pain out of ten.

Fibromyalgia: Doctor-patient relationship. How does empathy make a difference?

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I have been reading the book, ” The Invisible Kingdom”, written by Meghan O’Rourke. The chapter on doctor-patient relationship really resonated with me. I grew up in a smaller town, were your family doctor had the time to spend an adequate amount of time with you during appointments. It wasn’t out of the ordinary to ask how life was going and have a short personal conversation about family. Today, with such a shortage of doctors (in many areas of the world), finding a family doctor is near impossible. We are left attending walk in clinics, where you end up seeing a different doctor every time. Doctors and patients are not even given enough time in appointments to discuss medical concerns. We are often told to limit our visit to one or two health issues to discuss and only have maybe ten minutes in which to do this.

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People living with chronic conditions, have a difficult time discussing one topic in an appointment yet alone two health issues. Having such limited one on one time together, I feel that the doctor- patient relationship is slowly beginning to fade away and has become a thing of the past. In “The Invisible Kingdom” the writer explains that doctors don’t seem to display much empathy towards patients anymore. I believe many of us suffering with fibromyalgia have been in many situations where empathy has failed to be shown. However, research states that doctors should take the time to empathize with each patient. Showing empathy often results better.

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Have you ever watched the movie “Patch Adams” with Robin Williams?! It is actually based on a true story. If you have never watched it, I recommend it! “Patch” admits himself into a mental institution for suicidal thoughts at the beginning of the movie. After witnessing how doctors treat the other patients and himself while in their care, he quickly discharges himself from their care and sets out on a mission attending medical school. He graduated becoming a doctor. His goal was to help other people – taking into consideration the PERSON not just the illness. He wanted to connect with each and every patient he encountered. Patch was set out to bring joy to all patients – no matter how grim of a diagnosis they had just been given. He gained patients trust and made a huge difference in many peoples lives.

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Empathy and compassion in a doctor-patient relationship can make a huge difference. Both qualities are said to be highly effective and powerful. Empathy requires health care providers to put themselves in the patient’s shoes. If the physician takes the time to pay attention to a patient’s emotions a caring treatment plan can be created. A well thought out ,treatment plan will have positive results instead of negative.

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In one study, 2898 patients took part who suffered from moderate to severe chronic pain. The same doctor visited each patient at baseline, 1, and three months – having each patient fill out questionnaires. At the end of the study it was reported that chronic pain significantly decreased. It is said that by showing empathy patients are more likely to adhere to treatments and more improvements are seen. This study did not state if people with fibromyalgia were part of the study, but regardless it revealed how powerful empathy can be. You can read the results of this study here.

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Empathy not only allows the doctor and patient to connect on a better level, it also is proven to lower a patient’s anxiety levels. In fibromyalgia, stress and anxiety are one culprit of raised pain levels and other symptoms. I’ll use the pain clinic I attended for an example. The clinic began to have a very negative effect on my health. I was beginning to have anxiety attacks the day prior to my appointments – which then led to a full blown fibromyalgia flare up the following morning. I never saw eye to eye with a few of the pain clinic staffing who were directly involved in my care. When I stated I felt my fibromyalgia may have been triggered by a knee injury I got the spring prior, I was told an injury was not a possible cause of fibromyalgia. An injury is considered trauma – trauma is a possible cause of fibromyalgia is it not? As the months went on staff began belittling me and told me I was making their job too difficult. I complied with treatment, but when I expressed my frustration to the mental health counsellor that all strategies were only increasing my pain – I got told I was being too negative and that mental health would not continue to see me. I always thought psychologists and counsellors were there to help a person through the tough times and help change the negative to more positive thinking. “Making their job too difficult “- in my eyes this meant they didn’t know what else to do to help me – so they put the blame on me. It is easier to blame the patient then admit the program failed to help me. I often wonder if empathy was used, if I would have had a better outcome? I soon realized I was just a number to push through their pain clinic program so it would free up a spot for their long wait list. They eventually discharged me without even speaking to me first.

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Here is a video I found that brings a powerful meaning on empathy. It has been viewed 6.9 million times.

A Mindfulness technique – Active Listening Music Strategy

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For people with fibromyalgia, we are often recommended to take part in mindfulness exercises. Mindfulness is the ability to be fully present. For many of us, our mind wanders while we are doing things and it is like we are on auto pilot. Endless thoughts invade our mind all day long. When we remain mindful, our mind is fully attending the task/activity at hand – we are present of our surroundings and what we are doing. However, being mindful takes practice and is not an easy strategy.

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For myself, I often found being mindful extremely difficult and I would give up soon after beginning the process. I was given several strategies from various health care providers I had been working along side to help lower fibromyalgia symptoms. In this blog I will speak about one strategy , as there are too many strategies to cover in one blog post.

For you music lovers out there, you can incorporate a mindfulness activity in while you are listening to music. Many of us turn music on for background noise, but this mindful strategy requires you to actively listen to the music. If you have problems with traditional meditation ( like I do), mindful music listening can act as a great substitution for a meditation session. Five minutes a day listening to music can be just as effective as meditation if you really focus on the music.

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Be sure you pick music to actively listen to that you enjoy. It makes active listening easier if you use a song you like. You can expand later on and experiment by using other songs for this activity. Experts state that many people tend to listen to music that reflects their current mood. I wonder if this is why we may choose to listen to different genres from day to day?!

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During a session, I was asked what song I would use for this exercise. At the time I was feeling very defeated and frustrated from seeing no improvements with my fibromyalgia. I felt I was at rock bottom. Of course I couldn’t think of a song title on the spot so I picked the last song that was on the radio driving to my appointment. The song was “Fight Song” by Rachel Platten. Obviously, I had heard this song probably 100 times on the radio and never really paid attention to the lyrics. I went home and tried to actively listen to this song. Did I ever pick the right song. The lyrics seemed to fit my current situation- feeling defeated, judged by people/ previously involved health care providers and failing to get a handle of my symptoms. The song lead me to the following lyrics….

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Here are the steps to active listening that I was given.

1. Pick a song. You can pick a song you have heard or a song you have never listened to before. You can use music with lyrics or instrumental. The choice is yours. I was guided to pick a songs that I would normally listen to.

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2. Take a moment to ground yourself and breathe. Take a few deep breaths in and out. Take note how your body feels as you do this. Notice how you are positioned – sitting, standing, laying down, walking etc. Assess anything your body is physically touching. Do you have any tension or tightness in your body?

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3. Listen, and only listen! Shut out any external sounds by using headphones. Allow yourself to hear only the music. I often close my eyes or put my sleep mask on so I am not tempted to look around and lose the music.

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4. Notice the small details. What instruments can you hear in the music? Does the tempo of the song change? Does the volume change? Do the lyrics reflect anything? Do any visual images arise while listening to the music? How does the music make you feel? Does the song make memories arise? Notice how your body feels.

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5. Reflect. Does anything feel different? Any shift in your mood? Calmer? More tense? If you found your song choice was not the best, what other songs could you try next time?

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This is just one example of a mindfulness activity. There are many others. I will write about several other techniques in later posts that have helped me with taking part in everyday mindfulness. Active music listening can help lower stress and anxiety levels. Practicing mindfulness can put you in touch with the moment and help lower your worries. Lower overall stress levels, means lower chronic pain felt in fibromyalgia. This strategy is easy to adjust as well. You can use the same song over and over if you find a particular song easier to be mindful to, or you can explore with new genres and artists. Since I have such a difficult time even “getting into the zone” to meditate, I often use this strategy since I am a music lover! Happy listening!

Fibromyalgia – Worst advice received by someone who doesn’t understand chronic pain

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During a discussion on Fibrofighter’s facebook page and private group, I had asked “What’s the worst piece of advice you’ve ever received from someone who doesn’t understand chronic pain?” Here are the top five answers from people around the world who live with fibromyalgia!!

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1. “You just need to exercise more”

Probably 100% of fibromyalgia patients have been told this exact sentence by their doctor or any other health care provider. I believe exercise is important whether you have fibromyalgia or not. However, have health care providers ever stopped and asked you once how physically active you were before fibromyalgia? I never have! I used to always be on the go. I used to be able to walk for hours on end, bike ride outside during summer and ice skate in the winter. When a person was very active before their fibromyalgia diagnosis and loses the ability to take part in any of these physical activities -“just add exercise” is not the answer we want to hear.

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Second of all, no one ever stopped to tell me exercising with fibromyalgia looks completely different then what we perceive as exercise when healthy. “Just add exercise” is a very vague statement. Exercising with fibromyalgia needs to be less strenuous and more gentle. We need to be taught HOW to exercise with chronic pain conditions. I am so sick and tired of this sentence from health care providers and/or friends. Yoga is often recommended as an exercise for fibromyalgia, but did you know there are many different types of yoga? I didn’t. Which yoga is better for fibromyalgia? We are never informed. “Try yoga, it help you!” I recently found out there is chair yoga – which looks to be more suitable for my physical capabilities.

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2. “You just need to lose weight!”

Ummm… hello!!! Fibromyalgia affects people of all weight and sizes. Fibromyalgia does not pick and choose who to affect by weight! Anyone of any size can be diagnosed with fibromyalgia. Do people understand this? Obviously, we understand that being overweight is not the healthiest. Yes, we all know it is important to eat healthy. However, many of us with chronic pain – we gain weight for several reasons. We have a difficult time moving around due to increased pain / fatigue and other symptoms. Obviously we move around less because moving simply feels like our muscles, tendons, legiments, or our bones feel like they are being ripped out of our body. Less movement means weight gain for many of us. It is not because we want to gain this weight! Secondly, many medications used to help lower fibromyalgia pain, one of the side effects is weight gain! This weight gain shows up and is hard to lose it without discontinuing the medication. Bone pain or some extra weight. I think I would rather live with the weight gain then the debilitating pain fibromyalgia causes.

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3. It is all in your head – it must be your mental health.”

Fibromyalgia is not a mental disorder. It is not a fake or imaginary condition. I personally believe depression can possibly cause fibromyalgia due to a high stress response. Depression can cause the body to have a high stress load. Stress can be a trigger for fibromyalgia to develop. Just food for thought ( my personal opinion). When I hear people tell me it is all in my head – I always state “It is in my head! My brain amplifies pain signals and reads them wrong.” Fibromyalgia is actually considered a neurological condition, not a mental health condition. A recent study, reported finding an autoimmune response which could make fibromyalgia a rheumatoid condition in the future. We are not mentally crazy. There is scientific evidence fibromyalgia exists and is very debilitating. Anyone who solemnly blames fibromyalgia on mental illnesses is not informed and educated on current findings.

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4. “You will feel better if you get more sleep!”

What is sleep?! Most of us with fibromyalgia struggle with sleep disruptions or insomnia. If sleep was the answer we would have an easy cure. Sleeping when you have chronic pain is near impossible when the pain wakes you up every hour all night long. ” Get more sleep!” How do we get more sleep when scientific studies report that people with fibromyalgia do not remain in deep sleep long enough to benefit the body?! Even when I manage to get a solid 5-8 hours of sleep, I wake up looking like a zombie and feel like I have not even gotten an hour of sleep. Adequate sleep is recommended for everyone, but when you factor in chronic pain it just doesn’t fix the problem. No amount of sleep is going to fix a person with fibromyalgia. We might replenish a small amount of energy to get through the next day.

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5. “You just have to push through the pain”

This comments boils my blood. Pushing through pain from a sprained ankle is one thing, but pushing through chronic pain is nearly impossible. When we push through the pain we feel with fibromyalgia, it often results in amplified chronic pain or a full blown fibromyalgia flare up! What is the purpose of pushing through the pain to only end up bed ridden? In my opinion it is not worth pushing through the pain. Pushing through results in uncontrolled symptoms. Read more on my previous blog about pushing through here.

Fibromyalgia and Trigger Point Injections

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When I was attending the pain clinic, I spoke to the pain specialist doctor who recommended trigger point injections to help ease pain in specific areas. If you have not heard of trigger point injections – the injections often contain lidocaine and corticosteroids. The lidocaine helps block pain receptors in the muscles and the steroids helps reduce inflammation in the muscle and connective tissues surrounding the nerves. The injection is inserted into a muscle knot found in the trigger point injection sites. A muscle knot is tense muscle fibers – which prevents the muscle from relaxing. The knots cause the affected muscles to remain tense even when the muscle is at rest. The following picture shows several trigger point injection sites.

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While I was attending the pain clinic a nurse practitioner had evaluated me to see if I qualified for trigger point injections. A quick physical exam on my upper back revealed several knots in my neck and upper back had formed. Fibromyalgia pain seems to attack these knotted muscles twice as hard ( in my case). The pain in these areas are always steady and worse when I am in a flare.

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Trigger point injections are supposed to be a safe treatment option ( pain relief) for those with fibromyalgia. Fibromyalgia causes tense muscles and knots can form. The injections can help relax the muscles and allow your muscles to work properly. The relaxed muscles decreases tension thus reducing nerve pain. The trigger point injections may be more painful because fibromyalgia can make you extra sensitive to pain. I was always encouraged to try trigger point injections, but due to the fact it contains corticosteroids – I was unable to even consider it after researching the procedure further. I do know several people who do get the injections done for fibromyalgia pain. What they have all stated is the injection does relieve pain but does not last long enough before they can get another round.

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I decided to opt out of trigger point injections for several reasons. One of my main reasons was due to the fact that the pain specialist doctor could not seem to provide me any information about the trigger point injection procedure. When I asked how the injection provided relief, I got told ” We don’t actually know! It just does.” The doctor did not even want to provide me with information of what was in the injection itself. These are need to know information before I allow any procedure to be done. I was also not given any time to think about it or have my questions clarified. The doctor wanted to just begin injections five minutes into what I thought was just a consultation appointment.

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I am glad I choose to decline the trigger point injections. I later found out the injection contains lidocaine and a corticosteroid. My body is sensitive to many corticosteroids – leaving me feeling like I have bugs crawling under my skin. Corticosteroids have been marked on my medical file for years – not to be administered to me due to possible allergy/sensitivity. I am someone who can’t even use prednisone. I was shocked that this doctor did not review my file to be sure it was safe to administer trigger point injections before hand.

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When I researched trigger point injections I also found many sites that state these injections can have a possible side effect of damaging the muscles and nerves. However, I do not know the prevalence of possible damage caused by these injections. If you consider using this treatment route – I would speak to your doctor about this concern. The muscle damage is called myonecrosis – which appears to be treatable.

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Read more information about trigger point injections at the following websites:

1. https://www.onehealthcare.co.uk/treatments/trigger-point-injections/#:~:text=A%20more%20serious%20side%20effect,if%20symptoms%20continue%20beyond%20this.

2. https://www.thefibroclinic.com/trigger-point-injections-patient-questions-answered-part-ii/

3. https://www.medicalnewstoday.com/articles/327384

Do doctors know how to diagnose fibromyalgia properly? Do they know the fibromyalgia diagnostic criteria?

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As we know, fibromyalgia is a difficult condition to diagnose. With no specific test to help diagnose fibromyalgia it can become complicated and time consuming for the doctor. There is specific criteria that must be met to be diagnosed with fibromyalgia and also ruling out many other conditions. However are doctors familiar with the diagnosis criteria?! Over the years, the diagnosis criteria has changed and altered.

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An article I read explained that a doctor and his colleagues distributed a 37 item questionnaire which tested physician’s knowledge on the 1990 fibromyalgia criteria and the 2010 diagnostic criteria. I was rather shocked at the findings.

Overall, 12% of the respondents used only the 1990 criteria in their practice, 27% used the 2010 criteria, 12% used both, and 49% used no criteria. Therefore, only 51% of respondents adhered to these sets of criteria in diagnosing fibromyalgia.

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The results did show that specialists were more familiar with the diagnostic criteria, but did not have in depth knowledge. Even doctors who had the “most specialist training” only showed having 55.4% knowledge on the 1990 fibromyalgia diagnostic criteria and 72.4% on the 2010 diagnostic criteria. I believe the latest fibromyalgia diagnostic criteria was updated in 2016. It makes me wonder if doctors even know of the update as this article only lists the 1990/2010 diagnostic criteria.

For more information visit here.

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In addition (my personal thoughts)….

Many doctors are reluctant to begin testing early for fibromyalgia ( ruling out other conditions). In order to be diagnosed with fibromyalgia, symptoms must be present at a similar level for at least three consecutive months. Do doctors wait to see if symptoms last that long before beginning to rule out other conditions? My doctor began ruling out other conditions as soon as he suspected fibromyalgia. The waiting game is one of the hardest parts of fibromyalgia. We wait to see doctors or specialists, we wait for specific tests to be completed – then we wait some more for the results and repeat this process for months to come ( in some cases years).

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I won’t mention all the tests doctors may decide to run, but it is very time consuming. My doctor ruled out many other conditions then had a rheumatologist verify his fibromyalgia diagnosis. The rheumatologist agreed 100% on the diagnosis stating I meet all the diagnosis criteria listed.

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Another difficult aspect about a doctor evaluating fibromyalgia is that it is also diagnosed by self reporting. Doctors are often left trying to decipher if the patient is telling the truth to the many questions asked during the assessment. I understand their side of it as well – some people do try to play the system and fake fibromyalgia as there is not a test to diagnose. Sadly, those of us who are being honest and truthful when self reporting our symptoms often feel the backlash of not being believed.

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Doctors and other healthcare providers should be informed about diagnostic changes to the fibromyalgia criteria. If they are informed and educated about fibromyalgia more – it would save a lot of frustration all around. The first question I ask doctors is what they know about fibromyalgia and if they believe in the diagnosis. If they can’t answer these questions I know the frustration will soon set in on both sides.

Fibromyalgia – Are opioid medications used to treat fibromyalgia pain?

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If you are one who suffers from chronic pain you know too well the debilitating deep down pains we are having to live with. We often make several trips back and forth to the doctor for a prescription to help alleviate even a small fraction of the pain. Often times the use of opioids to help with pain is asked. Most doctors will not prescribe opioids for fibromyalgia pain. Why are opioids not recommended for the treatment of fibromyalgia?

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My doctor actually did have me on an opioid in combination with a medication for nerve pain, however I stopped taking it as I noticed no change to my pain levels while using it. I had a pain specialist explain to me that opioids don’t usually work for fibromyalgia pain when I mentioned I found no change of pain levels while in use. I started to do my own research and soon enough realized opioids are not the best choice for chronic pain management – at least when it comes down to fibromyalgia pain.

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What many of us don’t understand is opioid drugs are made to be used short term. We all know fibromyalgia is not a short term kind of condition. With many medications our body adjusts and begins to build up a tolerance level to the prescribed dose. Once that tolerance level is hit, higher doses are needed for the same effect to take place. Prolonged use of opioid use is associated with significant risk of addiction. Opioids are very addictive medications. The higher the dose, the higher the chance of addiction. I think this is a concern of many doctors – so they try everything possible before prescribing an opioid medication.

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A 2007 study revealed that people with fibromyalgia were found to have reduced binding ability of a receptor in the brain that is the target for opioid painkiller drugs. To simplify the findings – when these medications cannot bind to the receptors in the brain and spinal cord like they should, they cannot alleviate a person’s pain. If this is true, it could be why many people find opioids unsuccessful to treat fibromyalgia. You can read about the study here.

“These findings could explain why opioids are anecdotally thought to be ineffective in people with fibromyalgia,”

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Furthermore, frequent use and using opioids for too long are known to increase pain levels. You are probably thinking how can a medication increase pain when it is being used to decrease pain? This is known as opioid induced hyperalgesia. Read more information on OIH here.

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Sometimes opioids are prescribed for fibromyalgia. Depends on the doctor and circumstances. For myself, I stay away from them as the majority of research findings and reports state opioids are often unsuccessful in treatment for fibromyalgia. I was on a mild opioid – which caused further fatigue as opioids often have a side effect of sedative effects. You may be one of the people who finds pain relieve from these medications. My advice is to weigh your pros and cons when considering opioid medication for fibromyalgia pain.

Fibromyalgia – What causes fibromyalgia?

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The cause of fibromyalgia remains unknown, but there are many possible theories to what cause fibromyalgia to develop. Please keep in mind these are just six possible causes and there are likely more not listed in my article . For my article I am just listing the most talked about causes.

1. Hereditary.

Believe it or not fibromyalgia can be hereditary. If there is a family history of fibromyalgia, you have a higher chance of developing it. However, little is known about the genetic basis of fibromyalgia. More research is needed. A 2014 study suggests that a person is 8.5 times more likely to get diagnosed with fibromyalgia if a first degree relative has fibromyalgia.

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2. Physical trauma

Any form of physical trauma is believed to possibly trigger fibromyalgia. It could be trauma from an injury from being in a vehicle accident or even an injury such as a broken bone. I often tell health care providers I think my fibromyalgia began from a knee injury. The spring of 2019, I tore the meniscus and MCL in my knee. Shortly after it “healed” fibromyalgia symptoms began to surface. Keep in mind there are many forms of physical trauma – a vehicle accident to an abusive relationship.

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3. Emotional trauma

Experts believe that emotional trauma can also be a cause of fibromyalgia. Emotional trauma can happen in many situations. Dealing with the loss of someone you were close to can possibly cause fibromyalgia. I was also told by a doctor in 2015, he believed I had fibromyalgia symptoms after I lost my father to cancer. I shrugged it off because the symptoms were so minor back then and only affected me in the fall for a few weeks. Again, abusive relationships also cause emotional trauma. There are many other examples, but for my article I am only listing these two.

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4. Built up toxins in the body/gut

There are theories out there that the build up of toxins in your body are the root cause of fibromyalgia. I have not done much research on this specific theory, so I won’t comment/explain any further. I will say this though…the body removes toxins and waste from our bodies while we sleep. Many of us with fibromyalgia suffer from insomnia or sleep issues. Since this removal takes place while we sleep, can inconsistent sleep cause our body to not properly filter toxins and waste – resulting in toxicity and causing fibromyalgia to form? I don’t have the answer! Just food for thought!

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5. Stress

I personally believe being exposed to high amounts of stress can cause fibromyalgia. There is also a lot of research stating stress can trigger fibromyalgia to develop! Any form of stress! We all know that extreme amounts of stress is not good for our body – eventually our body says enough and respond in one way or another. Maybe for those of us with fibromyalgia that was our body’s response – developed fibromyalgia while others may respond with just getting sick with a cold.

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6. Illness

When we are sick with anything our body is put under stress. Could contracting a certain virus/ bug contribute to fibromyalgia developing? I know a few who contacted the Epstein Barr virus and later got diagnosed with fibromyalgia. Some viral infections have been linked to the development of fibromyalgia. When I attended an online fibro summit, a speaker spoke about seeing an increase in fibromyalgia diagnosis’s for those who had contracted covid19. Is it really fibromyalgia or long-covid symptoms?! Once again, I do not have the answer.

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In the future, researchers may eventually be able to pinpoint what causes fibromyalgia to develop in some people and not others. More research is needed!

How my father’s terminal cancer battle/memories have helped me through my fibromyalgia struggle!

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As of recent, I have been focusing a lot of my time on grieving. After being diagnosed with fibromyalgia, I learned grieving the loss of my old life needed to take place. When one is diagnosed with fibromyalgia we often lose our identity. It took me years to realize this. Once I grieved the loss of myself, I began to find the strength to push through again. At an appointment with the psychologist I currently see, I soon realized I did not really grieve the loss of my father. I once again had to allow myself to grieve ( and still in the process). Grieving the loss, many conversations my dad and I had while he was sick began to flood my mind.

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In 2015, I lost my father to a long battle with cancer. One of our conversations always comes back to my mind. “No matter what, take care of yourself. Get all the testing possible to detect anything at early stages. I am not just referring to cancer! Promise me this my girl. ” As we sat on the couch I whispered beneath my tears I promise. My dad always called my mom and I his girls and he was always so proud to have been able to call us this. I don’t have cancer, but I do have fibromyalgia which is also a very debilitating condition ( obviously not the severity as terminal cancer).

Picture taken at the moment of the above conversation in 2014.
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I kept my promise. Doctors probably think I am a hypochondriac because when my symptoms of fibromyalgia began I insisted on every test possible. I even pushed for a brain MRI to make sure it was not MS ( MS and fibro have many overlapping symptoms) – even though there was no indications of rheumatoid conditions in my blood work detected. We only get one body, so it is important to take care of it no matter what. I know I am not a hypochondriac, so I decided if doctors want to have that opinion of me, they can own the problem.

This text I hold close to my heart. My last text my dad sent to me.

I look back at my dad’s courageous battle, and realized not once did he ever complain about the pain from cancer or side effects of chemotherapy. I often wonder how he did this with the bone pain he experienced. I too have bone pain with fibromyalgia and wonder if the bone pain I have is similar to what my father felt. I assume the pain from cancer is much worse and it amazes me how he never complained once. Obviously many tears were shed, but never once did I hear him speak negatively. The bone pain I experience breaks me most of the time – to the point I can’t stand up out of bed or off the floor. I try to stay strong remembering how strong he was during his battle. It motivates me to not allow fibromyalgia to overtake my life. I refuse to let it win. I was recently listening to a podcast on fibromyalgia and Dr. Liptan ( author of The Fibro Manual and fibromyalgia warrior herself) spoke two sentences which resonated with me. “Your life is not over. It’s probably going to look different, though!” It sure does look different, but she is correct when she states your life isn’t over because of fibromyalgia.

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My dad often was heard saying “It is what it is!” after being diagnosed with terminal cancer. These five small words have made such a drastic impact on me and have stuck in my mind. The saying is often used when a person is facing a challenging situation that cannot be changed and must learn to accept these circumstances. I often find myself saying these exact words in regards to being diagnosed with fibromyalgia. I had to come to terms with the fact I got diagnosed with a chronic pain condition with no cure. There are many strategies out there that can help improve fibromyalgia symptoms, but finding the right combination is the challenging part. What works for one person may not work for the other.

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My journey has led me down a pathway of stepping out of my comfort zone and trying new strategies with the guidance of a psychologist. Strategies that I finally feel are showing benefits instead of resulting in failures. I got so frustrated and discouraged with health care providers trying to “fix” me instead of helping me learn how to manage fibromyalgia and it’s symptoms or trying to repeat failed treatment routes. False hope does not help improve fibromyalgia – just like false hope does not cure cancer. It can create high anxiety/depression and further frustration to set in ( at least in my case). Even the rheumatologist who confirmed my fibromyalgia diagnoses told me ” Go enjoy nature alone and ignore society – your fibromyalgia will improve!” Say what!?!? Nature is good for the soul, but please do not take this rheumatologist’s advice. Don’t hide from society! Find the courage to live your best life under the circumstances that you are faced with . “Fly above negativity.”

The occupational therapist I was working along side, gave me this decorative piece at discharge. She knew I felt I had hit rock bottom, and needed to hear these words of wisdom!
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As for my father…I hold the memories close to my heart. My father’s final words to me were “Smile, don’t be sad! The last life lesson he taught me before he passed away – GRATITUDE!

Fibromyalgia and migraine headaches show a high correlation…

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Fibromyalgia and migraines have a correlation. It is not understood why fibromyalgia causes migraines to form or why migraines may cause fibromyalgia. However, there is a theory that both conditions are linked to the levels of the hormone serotonin. Serotonin is a chemical in the body that is necessary for communication between nerve cells. Low serotonin levels can cause blood vessels surrounding your brain to dilate. The dilation of these vessels can cause the throbbing pain felt in a migraine. People with fibromyalgia often have low serotonin levels as well. What happens when you experience a migraine along side fibromyalgia!?

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In 2015, a study was conducted on the frequency of migraine headaches in patients with fibromyalgia. A total of 1730 people were surveyed. The results concluded that migraines are very common among people with fibromyalgia. Doctors and healthcare providers should be aware of the two overlapping conditions. Individuals who have both conditions are more likely to see an increase in cumulative health problems. My question is, do doctors know migraines and fibromyalgia often coexist? Most doctors only include unexplained pain in their diagnosis.

You can read more about this study here.

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“Over 30 percent of people with migraine also have fibromyalgia, according to a study published in Clinical Rheumatology, and the frequency of migraine in people with fibromyalgia is 55.8 percent”

https://www.everydayhealth.com/migraine/what-you-need-to-know-about-migraine-and-fibromyalgia/
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In 2018, another study on migraines and fibromyalgia revealed several factors. Fibromyalgia can increase the intensity of migraines. Individuals without fibromyalgia, might feel migraine pain levels at moderate ( but can be severe) , while people with fibromyalgia might have severe pain. The intensity of these migraines can be extremely debilitating and disabling. People with both conditions experience a higher headache intensity and disability. The study also reported that people who have both conditions will also have higher depressive symptoms. I personally can see the higher rate of depressive symptoms as a possibility. both conditions are chronic pain conditions, which lowers one function ability even lower.

For more information about this study, you can visit here.

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A few facts…

1. Women are more likely to suffer from fibromyalgia and migraines.

2. A survey concluded that 97% or respondents reported that light was a trigger for pain and other symptoms

3. In the same survey, 63% were sensitive to light between attacks.

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For myself, my neurologist prescribed appropriate medications to treat my migraines. A rescue medication to be taken at the onset of a migraine and a preventative. It has lowered my migraines, but I still find I do get more then my share of migraines. I’ve experienced really intense headaches since I was in my early twenties. However , I was always told they were cluster headaches or tension headaches. It wasn’t until last year I was diagnosed with chronic migraines with aura.

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Conclusion

I do believe fibromyalgia can intensify migraine pain levels. Fibromyalgia lowers our body’s tolerance to stress ( migraine) and also lowers our pain threshold. Both factors can increase how we feel pain levels. For now, I take every step to try to prevent migraines from occurring as much as I can, because the migraines I do experience are debilitating and leave me bed ridden.

Here is a website about migraines which I found very detailed and informative. Migraines.

Fibromyalgia – Why we simply can’t push through the pain.

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In the past I have gotten many comments from health care providers and others ( who don’t understand) stating I should “just push through” the pain. However, I have never agreed to this saying when it comes to chronic pain in fibromyalgia. Chronic pain is not like the pain felt after that intense work out at the gym. Yes, both produce pain and both cause physical limitations, but in my eyes the circumstances are so different.

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There are times I may push my physical limits – attending a special occasion like celebrating a birthday or even to get a task done around the house. However, most times pushing my limits and “pushing through” results in a fibromyalgia flare up/ crash for days on end! For those of us who have fibromyalgia we all can relate, but for those of you reading this who do not have a chronic pain disorder, it may be much more difficult for you to understand – and that is ok.

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Imagine you are driving down an unfamiliar road and you eventually hit a dead end. Obviously you can’t drive any further as the road ends. You have to turn around and go back the way you drove in. I guess you could technically keep driving off the road if there is no barrier stopping you, but it is risky. Is there any dangers beyond this dead end sign?! I use this example to compare to fibromyalgia because if we push through and keep driving our body to do more then we can handle we risk the unknown ( heightened pain, fatigue, flare up, etc.) When we feel like we need to stop to rest, we see that barrier in sight and have to decide if continuing is worth it.

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Imagine driving your vehicle until it hits empty. I’m usually the type of person to add gas everywhere where I stop just to be safe. Some people take the risk and let the gas gauge hit the empty area. If you keep driving without stopping to put gas in, eventually you will run out of gas and the vehicle will not run. You are left stranded on the highway wondering what to do next. Many days my energy level runs on that empty gas tank reading. We must learn our limits and work within those limits. Obviously we have to keep pushing in circumstances. If we push through we eventually hit completely empty and can not function. – just like a vehicle that has run out of gas.

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I had a doctor once tell me “No pain, no gain.” I am totally against this saying when it comes to chronic pain. We need to lower our pain levels not cause a further increase in pain and a flare up to occur. Pushing ourselves through an exercise routine ( etc. ) that causes higher pain defeats the purpose. Pushing yourself way beyond your pain tolerance – will not help increase your pain threshold. It will only feed the pain cycle further. Just like the dead end road or driving until your gas tank is empty , people with chronic pain must stop before they hit an empty tank or dead end road.

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So please understand that when we say we can’t do things and need to rest, we are not being difficult or unmotivated. We simply are facing our reality – a slower paced life so we do not run out of gas like the car or hitting that dead end road. If we push through – we eventually hit empty! We hang on by a a thread until the thread breaks and we crash!

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FM/a blood test for fibromyalgia – does it really detect fibromyalgia?

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We are often told that there is no one test that can detect if we have fibromyalgia. Last year, I read about the FM/a test that supposedly can detect if a person has fibromyalgia or not. I do not think this blood test is readily available world wide and is costly. However, is it a reliable test? Does this test create false positives or false negatives?

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According to the official website of the FM/a test, they state that the test gives you a definite diagnosis of fibromyalgia. However, I am not sure how much I trust this statement as the test itself does not seem to be FDA approved. They state the test is FDA approved, however it is not listed on the FDA site when I search for the FM/a test. This has left me a little confused. Is it or is it not FDA approved?!?

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“FM/a is a cytokine assay of in vitro stimulated peripheral blood mononuclear cells. Production of cytokines by stimulated immune cells in patients with fibromyalgia has been shown to be significantly different from that of healthy control patients. Based on the concentrations of four cytokines, a cytokine/chemokine composite score, calculated as 1 / (1 + e−x) * 100, on a scale of 0 to 100 was developed. A score greater than 50 is considered positive for fibromyalgia.”

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The site that there is a 99% accuracy rate, however in another article I read stated the test showed a higher false positive for people with RA –rheumatoid arthritis (29%) and lupus ( 31%). From speaking to many people with fibromyalgia over the internet many also have RA or lupus alongside their fibromyalgia. Why is their site reporting a 99% accuracy while the other study reveals false positives were detected ? You can read about the study here.

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Their website also goes on to list twelve symptoms of fibromyalgia. These include chronic pain/tender areas, chronic fatigue, brain fog, anxiety/nervousness, feeling depressed, trouble concentrating, headaches, restless legs when sleeping, poor sleep, joint pain, leg cramps and areas of numbness /tingling. The site states you must have at least four of the listed symptoms to qualify for the FM/a test. I agree that these can be symptoms of fibromyalgia, but they can also be symptoms of many other conditions. I personally think having four of these symptoms alone is not enough evidence that it could be fibromyalgia. I can’t justify spending $1080 for the blood test. Yes!! You read that right. The test costs $1080 per pop! Most insurance companies will not pay for the blood test to be completed, but on the FM/a website states it is covered by insurance. The people I have conversed with who did have the test done, all states it was not covered and they had to pay out of pocket. Maybe some insurance companies will pay, but I also think it depends on the company and where you reside. I have just learned in the last week many countries do not even accept fibromyalgia as a diagnoses or even a disability!

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FM/a test results will be shown as above.
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Downsides to the test

1. Patients must stop taking ALL medications that may alter their immune system for two weeks prior to taking the FM/a blood test.

2. High percentage of false positives are detected.

3. The cost of the test is $1080!

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To have a positive diagnosis the FM/a test must be at least 50/100. Any lower they state it can’t be confirmable. If your test comes back positive for fibromyalgia and you are 18 years of age, you can qualify to enter into a clinical trial for treatment – which includes BCG. I had no idea what was meant for BCG, so I googled it. The search returned BCG as being a vaccine used years ago for TB (tuberculosus). I could not find any other uses for BCG. According to canada.ca, the routine use of BCG is not recommended. Maybe being used in a clinical trial to treat another condition may be different. I do not have the answers.

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I have seen discussions online from people who have had the FM/a test completed and got a positive diagnosis of fibromyalgia. It would be interesting to have an in depth discussion with these individuals to acquire more information about the experience. For those of you who have gotten the test, please know I do not judge your decision as each of us have to do what we feel is right. For myself, there are just so many unanswered questions about this specific test and why is it not mentioned by doctors we see?

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Conclusion: If this blood test is so accurate, why is it not FDA approved ( or listed on the FDA website) ? Why do the doctors in the states who have fibromyalgia themselves and run fibromyalgia clinics, not speak of this test? If the blood test is 99% accurate why isn’t this test being used worldwide to help diagnose fibromyalgia at a faster rate?!? As of right now, it can take years to get a solid diagnosis for fibromyalgia. If you are like me, every health care provider I have seen, including specialists have told me there is not a test to diagnose fibromyalgia and that it becomes a rule out kind of diagnosis. Are doctors unaware of this test ? I do not have the answers to my own questions.

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The FM/a test could be a step in the right direction. It would be great to have a blood test be able to detect fibromyalgia. However, I personally will not be spending $1080 for a blood test at this point. I feel like there needs to be a wider study done on the blood test to verify its accuracy. I fear jumping straight to getting the test completed, could possibly lead to many possible misdiagnoses due to false positives and negatives.

Fibromyalgia makes even grocery shopping difficult

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Fibromyalgia can make grocery shopping a very daunting task. For people without chronic pain conditions, it is just another errand to get done. For those of us with chronic pain, shopping can be overwhelming and absolutely exhausting – which can often leave us having to rest for hours on end or land us in bed for days to come. You may wonder what I mean when I say shopping with fibromyalgia is a daunting task. Here is why…

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Grocery shopping takes time and energy. First of all, pushing a shopping cart begins to hurt me. The heavier the cart gets, the harder it is for me to push. If I am only shopping for lighter food items, I am able to push the cart. However, if I start adding in laundry detergent, a bunch of canned items or a case of soda the cart is too heavy. If I try to push the full cart, my arms begin to ache down to the bone snd feel overworked and my neck and upper back begin to hurt beyond words. I never grocery shop alone, unless it is for just a few light items.

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Walking the aisles of the grocery store also wears me out physically. What little energy I had, is now gone. My feet/toes begin to burn and ache, along with jumping pain in my legs. Who knew shopping could cause someone so much pain to result? I know the grocery store has those motorized shopping carts, but I also know if I use one I will get the “look” from people because I do not look sick.

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Grocery stores can also cause sensory overload to result. Many people with fibromyalgia report sensory overload becoming an issue. Grocery stores can become loud with various noises and the lights can be very bright. Depending on what time you decide to venture out to get your groceries, it can become very busy and crowded. I tend to go complete my shopping as early as possible to beat the crowds. Even the store intercom can seem overwhelming and too loud at times.

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A lot of grocery stores now offer a shop from home option. You shop online, make a shopping list and someone else will shop for you. All you have to do is go pick up the order or better yet they will delivery straight to your home. I have never used this convenient shopping option because I like to select my own produce such as apples, oranges ect. There usually is a delivery fee, but for some people it is worth shopping this way.

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How to make grocery shopping easier with fibromyalgia:

1. Shop grocery stores you are familiar with. This way you know what aisles the exact food items you are looking to buy.

2. If possible take someone shopping with you.

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3. Make sure you take a cart that the wheels roll easy so you won’t struggle even more pushing the cart.

4. Possibly wear earplugs if you get sensory overload while shopping.

5. Shop during quieter times to avoid crowds and added noise levels.

6. Create a shopping list before you go to the store. Most people own a smartphone and take it along with them shopping. It is easy to make a shopping list on your phone so you don’t forget your list at home.

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7. Use motorized riding carts if you need to.

8. Park as close to the door as possible.

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Four reasons I blog about my fibromyalgia journey…

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You may be wondering why I write and blog about my fibromyalgia journey. There are many different reasons behind why I began blogging. Many people probably think I blog to receive attention – wrong assumption! Here are the reasons I began blogging…

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1. After being diagnosed with fibromyalgia I soon learned that I was beginning to journey down a pathway that many health care providers and people do not understand. I realized fibromyalgia was recognized as a condition, but it is very much misunderstood. After different “treatment” routes attempted and no improvements noted, my frustration soon set in. I figured people all over the world who are diagnosed with fibromyalgia, must be feeling the exact same frustration as myself. It took me a long time to find the courage to begin my blog, because I was afraid of being judged or my blog would simply fail. After months of deep consideration I started my website and promoted as much as I could. My goal was to help other fibro fighters feel not so alone. Chronic illness can be just that- lonely. It becomes a journey that is only understood by those directly affected by fibromyalgia.

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2. As I research to write blog posts, I learn more information about fibromyalgia. I’ve learned a lot of new information about fibromyalgia – probably more then most health care providers I have seen know. Most doctors know the basic information about fibromyalgia, but are they able to provide information on all the previous fibromyalgia studies completed? Probably not. The more I research, the more quality information I can also share for you all.

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3. Through blogging I am able to find purpose in life. Since being diagnosed with fibromyalgia I had to stop working, give up my career I trained in and stay home most days to learn to manage my fibromyalgia. I felt a loss of identity ( which is often felt by people with chronic illness). As human beings we seek purpose in life. We wake up, go to work, work towards a goal, ect. When one is diagnosed with chronic pain such as fibromyalgia, our whole life is turned upside down. I find since I started my blog I have a sense of purpose back. Blogging gives me a goal to work towards – helping others. It brings a sense of accomplishment when I see people connecting to what I have written! When you have purpose, you are more likely to actively seek self management for your fibromyalgia!

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I came across a 2018 study which stated that “regular blogging is potentially useful for people with chronic pain as it provides a conduit to enable them to connect with others who understand and share their experiences of pain, possibly encouraging increased participation in personally meaningful life activities, positive pain management experiences, and social connectedness.” You can read the article here.

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4. Raising awareness and fighting stigmas. Writing about fibromyalgia raises awareness – especially if people without fibromyalgia read my blog posts. My posts give people the opportunity to read and understand what living with fibromyalgia is really like. My blogs also help spread fibromyalgia information/awareness to anyone who has just recently been diagnosed as well. When you are newly diagnosed, it can be overwhelming. There is also such a stigma attached to a fibromyalgia diagnosis – even if I can make a small change in one person’s attitude towards chronic pain- I have succeeded!

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There you have it! The four main reasons I decided to begin blogging about my journey with fibromyalgia. I hope as you read my blog posts, at least one post resonates with you!

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The Spoon Theory – What is it and how to use it?

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Have you ever heard of the spoon theory?! The spoon theory was created to help give a visual picture to help illustrate the energy limitations on people who live with a chronic illnesses ( which included chronic pain). The spoons represent a unit of energy. Every task you work at during the day uses up a spoon – depleting your energy reserve. Some tasks use more spoons then others. This theory not only helps people living with the chronic illness, but also helps those living without a chronic condition understand those who live with chronic illnesses.

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The spoon theory is usually based on a 12 spoon count. You begin each day with 12 spoons. If one doesn’t get a good nights sleep, forgot medications or even skipped a meal immediately take a spoon away. If you have a cold or are sick automatically take four spoons away. Imagine starting your day with limited spoons. How would you function?! For example, you have a cold bug, were too exhausted to eat supper the night before, forgot to take your evening medication and did not sleep well. That leaves you 5 spoons left for the day.

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I was introduced to the spoon theory in the fall of 2022. Before this I had never heard of this theory before. I wish health care providers would have shown me this theory long ago. We are often told to pace ourselves during the day, but most of us struggle with what pacing looks like when factoring in chronic pain. When given the visual aid of the spoon theory, we are able to understand how to be economical in how to spread and use our energy ( spoons) through out the day! I try to refer to this theory so I remember to pace myself everyday.

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To “replenish” spoons a person needs to rest or take breaks between tasks to allow energy reserves to build back up. Keep in mind, just because you rest between tasks, does not necessarily mean your energy will rebuild. If you are like me, once I hit my limit for the day, no matter how much I rest, my energy does not seem to rebuild. Example. If I clean the floors in the morning and then rest for a few hours, my energy is still not replenished by the evening. Even though I use pacing the day, I still find myself exhausted. To help replenish spoons practicing self-care can help restock your energy.

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Here are a few examples of what helps me replenish my energy ( your list will look different)

1. Music

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2. Resting in bed

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3. Reading

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4. Time with pets

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5. Puzzles

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6. I recently found a few guided meditation sessions that relax me so much that I am almost asleep at the end of them.

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There are many websites out there explaining the spoon theory in greater depth. If you need more examples of which tasks use how many spoons, I found looking under images on google have a lot of different visual aids with different tasks. For more information on the spoon theory visit: here.

I asked! You shared! What advice would you give to a fellow fibrofighter!? 40 answers shared

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I asked the following question on many different social media platforms. “What advice would you give to a fellow fibrofighter?” I asked. You all shared. I decided to put together a post sharing all these wonderful ideas and tips. I hope those reading these can find some comfort, useful tips and feel understood.

1. Give yourself permission to take as many breaks as you need and don’t ever feel lazy or guilty about it!

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2. Slow down! Don’t push yourself!

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3. Give yourself time to grieve.

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4. Advocate for yourself.

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5. Adaption and acceptance are long term processes, they don’t come over night. You will develop routines that help you adapt to situations better.

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6. Know your limits!

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7. Having compassion for yourself is so important. Take things slowly and listen to your body.

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8. Learn to pace and read your body’s signals. This isn’t something anyone can teach you. It is something you have to figure out on your own. How much can you do in a day? How often you should take a break? How much exercise does your body needs and how much is too much? Only you can answer these questions!

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9. Breathe. Remember to breathe!

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10. Take it one day at a time. You have good days and bad days. Give yourself credit for what you can do and don’t beat yourself up over what you can’t do.

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11. It is okay to be frustrated by fibromyalgia. Especially since there is no cure. Don’t dwell on it, but allow yourself to grieve.

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12. Accept modern medicine will not cure fibromyalgia. Look at other aspects such as diet and exercise.

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13. We shouldn’t belittle another’s pain. We feel things a little differently then the average joe. Others may not have the same pain tolerance! What may bring the average joe to their knees is something most of us deal with on a daily basis. For them it is more shocking, dramatic and immediate.

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14. Don’t push yourself to the point of exhaustion, because that just makes it worse.

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15. Listen to your body. If it tells you to rest, then rest.

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16. Fibromyalgia is a long haul situation. Try to accept that now. I think acceptance makes life easier.

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17. Don’t be ashamed to use mobility aids if you need to! It does not mean it is the end of the world. Those aids are there to help us, not shame us.

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18. Find your new normal, slow your pace of life and say NO if you have to!

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19. You don’t have to fight all the time. Retreat and regroup!

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20. Be more purposeful with your days. By that I mean instead of just trying to get through them, try to be actively present throughout the day. Check in with your mind, body and surroundings often. Catching any off moments, can prevent the pain from getting worse.

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21. Look after yourself. Do things according to how you feel and how your body feels. Don’t pressure yourself and be patient!

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22. Keep up on electrolytes. We burn through them faster then people without fibromyalgia.

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23. Deep relaxation and meditation helps.

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24. You are not weak. Having to survive and get by in daily pain is something only tough people can do! Let the insensitive comments roll off your shoulders.

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25. Find new hobbies you can succeed it. It helps take your mind off the pain!

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26. Do something every day that warms your heart!

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27. Do your best, because that is good enough!

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28 . Do not give up. Pain is real. It is very tough, but not stronger then our hope!

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29. You don’t have to try to be positive every second of every day! It is okay to say, ” this is really S***. I can’t do this today and wallow. As long as it isn’t everyday!

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30. I tell myself, ” yes today is rough” and I allow myself to take it easy!

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31. Don’t try to do everything all at once. Don’t feel guilty or berate if you are not able to get things accomplished. Do listen to your body. Rest when you need to.

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32. Be patient and gentle with yourself. Remember every day is different.

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33. What works for one person might not work for someone else. Keep trying different things.

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34. You don’t have to validate your pain to others.

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35. Accept that a sofa day is not being lazy, it is healing yourself.

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36. Accept that not everyone will understand that your pain is real. Don’t worry about them, worry about you!

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37. Don’t be scared to ask for help. If people offer you help, don’t be afraid to accept it.

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38. Focus on what you can do, rather then what you can’t do! ad

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39. Don’t let family or friends push you into doing more than you can.

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40. Do not let fibromyalgia define who you are!

What I wish I knew early diagnosis of fibromygia!

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1. Learn to slow down and pace myself! Fibromyalgia requires you to slow down so you don’t cause a flare up to form! It also helps reserve energy. I wish I was told this earlier on. I could have prevented so many flare ups from forming. You may not get everything done that you wanted to in a day and that is ok. Learn to prioritize what is most important. There are many days where I have a list of things I want to get done. I may only get to one or two on the list.

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2. Health care providers stress self care with fibromyalgia! I wish I knew how important this truly is when dealing with chronic pain. Most times our lives get so busy to even factor in self care, but once you are diagnosed with fibromyalgia or any chronic pain condition self care becomes so important. Make sure to take the time for you! Even if you can’t manage to take say 30 consecutive minutes, I am sure 5 minutes is possible. I noticed once I started to take time for me to wind down or relax my pain levels stay a bit lower.

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3. I wish I would have known how important self advocacy was earlier on! I was always too scared or shy to speak up. After 3.5 years I have learned to use my voice! After all, we know our body best and know what may work and not work by gaging from our limitations. I feel by not speaking up sooner, I have now gotten labelled as being “difficult” by many health care professionals. It is not that I am difficult, I now know what works and what doesn’t. Repeating failed treatment routes is not where I want to find myself. It only causes frustration and anxiety to form!

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4. I wish I knew that there was more to fibromyalgia than just chronic pain! When we see the list of possible symptoms that can occur along side fibromyalgia, we often think it isn’t possible. Reality is it is possible! As the months pass, I often find myself dealing with a new symptom.

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5. Fibromyalgia is not a uniform condition. Everyone’s fibromyalgia journey will look very different! What works for some people, will not work for others. Do not compare yourself to others with fibromyalgia. This is not how the condition works. Remember, your body does not read like a textbook. Just because a symptom or solution is listed on a site or book, doesn’t mean it will be successful! Keep exploring ideas for relief if one option fails. I have watched several attempts fail, but I keep searching for something new to try!

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6. I didn’t realize I would grieve my diagnosis before I could accept it! Fibromyalgia is a very debilitating condition with no cure. It took me three years to come to terms with the fact that my life is very different now. Fibromyalgia takes a-lot away from a person and you need to learn to accept and adjust to the new normal! Don’t feel weak if you are grieving. Grieving does not make you weak!

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7. That I would come across many people who do not understand fibromyalgia. There will be many insensitive comments and gestures be made. Remember, it is lack of knowledge and understanding fibromyalgia at work here! Many doctors and health care providers don’t quite understand fibromyalgia themselves. Friends and family may make remarks that are hurtful and insensitive! Try to share information you know to be true about fibromyalgia to help educate people around you – to be able to somewhat understand the condition!

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8. How exhausting fibromyalgia actually is. We are always told that fatigue is a symptom of fibromyalgia, I never realized how much fatigue would control my life. The exhaustion is not simply just being tired. It is a complete life altering fatigue to the point where it can become difficult to take care of your basic needs. Early diagnosis I had fatigue, but it has gotten worse over the years. Every task no matter how small it is, just drains every last energy reserve I had built up!

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9. I wish I would have known how important it is to listen to my body. As the saying goes your body never lies to you! If your body is telling you to rest, then rest. It is what it needs at that moment. We learn that being in tune with our body becomes an important survival mechanism needed when dealing with fibromyalgia.

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10. I wish I knew the amount of strength it requires to push through each day living with fibromyalgia. We are often thought to be weak because we can’t handle the pain levels. It is actually the opposite. It takes alot of courage and strength to live everyday in extreme pain levels and actually succeed to get at least something done in 24 hours!

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Fibromyalgia and sound sensitivity. Why do sounds become difficult to deal with? Is brain inhibition responsible?

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Before being diagnosed with fibromyalgia noise rarely bothered me. Working in a school you learn to ignore all the different sounds. Since my fibromyalgia diagnosis, sounds begin to bother me more and more. People who live with fibromyalgia are hypersensitive to muscle, joint and widespread pain, but research is revealing hypersensitivity to sound as well.

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For myself I find noise can create many emotions to arise. These may include:

1. Feeling annoyed

2. Feeling anxious

3. Feeling panic

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Other symptoms I experience:

1. Pounding heart

2. Tightness in chest as anxiety increases

3. Headaches may appear

4. Increased pain levels

5. Sounds feel like they echo within my ears

7. Loss of concentration

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There are a few theories to why people with fibromyalgia develop sound sensitivities. In one study, researchers had people with fibromyalgia listen to certain sounds through earphones and they were asked to rate the sounds based on how mild or severe they sounded. The study also had a group of participants without fibromyalgia do the same. Three different stimulus intensities were used. The participants with fibromyalgia required less sound pressure to report similar loudness ratings then people without fibromyalgia. The conclusion of the study showed people with fibromyalgia are more sensitive to sound and reported lower volume sounds to be more intense.

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Most times we are often told the sensitives are just “in our head”. However studies such as the one described above are proving this to be wrong. Studies are beginning to reveal that it is most likely due to nervous system problems. Our nervous system makes people with fibromyalgia perceive sound more severity then those without fibromyalgia. More research is still needed.

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A second theory has to do with brain inhibition. I had never heard this term before. Inhibition is when our brain filters out things that are unimportant. Easiest way to understand it is imagine our brain has a noise cancellation function – almost like a set of headphones with noise cancellation. For example you may be working in your office and the florescent lights may be making a loud buzzing noise. Usually our brain inhibition eventually stops us from hearing the buzzing noise. However, experts explain that people with fibromyalgia will lack inhibition – which means we have a difficult time tuning out sounds. Our senses will bombard our brain with so much information and our brain can’t handle it! Our bodies react from over stimulus. We may be unable to concentrate and we forget what we are doing. Anxiety or panic attacks can even form – pounding heart, sweating,dizziness,etc. This creates stress to form within our bodies which make pain levels of fatigue get worse!

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I am still learning to deal with the sound sensitivities. I am still working at identifying which sounds trigger me. I can identify most of my triggers, but the sounds still irritate me and cause my anxiety to rise. I read one strategy is to work on lowering the symptoms of anxiety and panic before a full blown anxiety/panic attack is set off. If you need guidance in how to lower anxiety, there are many excellent Youtube videos on anxiety management. If in doubt, I would recommend speaking to your doctor or a psychologist who may be able to guide you further!

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There are a lot of situations I may avoid to prevent having to deal with some of the sound sensitivities or alter my routine when possible. I often go to the store earlier in the day to beat the loudness or go out for dinner slightly early to avoid the overwhelming restaurant hustle. When I attend the pool to swim, I often go when the pool has a quieter atmosphere. They set aside certain hours dedicated for those who live with sensory issues. Sound sensitivity can be manageable if using the right strategies. I believe there may be cognitive behavioral therapy strategies out there to help one cope with living with sound sensitivities. I am still researching how to manage my own noise sensitivity!

People with fibromyalgia may also be sensitive to light, smell, heat or even to tactile. To prevent my blog post from becoming to long and overwhelming I broke it down. I will write another blog on other sensitivities later on!

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According to experts adding vitamin/mineral supplements in may help reduce fibromyalgia pain and symptoms! Vitamin deficiency often accompany fibromyalgia.

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Before I got diagnosed with fibromyalgia my vitamin levels were perfectly normal. As the years pass, my vitamin levels continue to drop. I do know aging can causes our vitamin levels to be lower, however I believe fibromyalgia has played a part in my vitamin levels dropping fairly low. Research actually proves fibromyalgia can lower certain vitamins in the body, which may make fibromyalgia symptoms worse. There are actually theories out there that vitamin deficiencies are partially responsible for fibromyalgia development. I recently had blood work done and a I have learned a lot of my vitamin levels are extremely low.

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Iron

Having low iron levels can either mimic or possibly contribute to heightened fibromyalgia symptoms. Women with fibromyalgia are more likely to have iron deficiency. Low iron can cause extreme fatigue to form. For those of us with fibromyalgia the chronic fatigue, muscle/joint pain, headaches, weakness, further decreases endurance levels and sleep disturbances may all heighten, as low iron levels can cause all theses symptoms to arise. Having low iron can also cause a person’s pain threshold to lower and increasing pain sensitivities! I’ve had lower iron levels for some time now, even with iron supplements. I now wonder if low levels of iron are causing some of my fibromyalgia symptoms to feel worse.

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A study done in 2010, revealed that there appears to be an association between ferritin levels and fibromyalgia. People with fibromyalgia tend to have lower levels of ferritin then those without fibromyalgia. Ferritin is responsible for storing iron in the body. For myself my ferritin level has remained stable. This study is older, but as far as I know there has been no current study done. Here is the link for the study.

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You can read more about iron deficiency here.

Calcium

Studies reveal people with fibromyalgia often have a calcium deficiency. Calcium is the main content in bones and joints and is important in muscle contraction. Low calcium can cause muscle cramps, fatigue, lack of energy and can also lead to insomnia. In fibromyalgia our muscles remain tight and have a difficult time relaxing and contracting. Adding a calcium deficiency on top of fibromyalgia can possibly heighten the tight muscles and other symptoms. Here is a short article about fibromyalgia and calcium deficiency.

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You can read more about calcium deficiency here.

Magnesium

Magnesium plays a crucial role in our bodies – muscle and nerve functioning and energy production. Magnesium deficiency is associated with muscle cramps, fatigue, sleep disturbances, and anxiety. Again the result of a magnesium deficiency are all the common symptoms of fibromyalgia. Women with fibromyalgia are often seen to exhibit lower magnesium levels. Magnesium supplements are often recommended to help relieve fibromyalgia pain and other symptoms. Ever hear of Epsom salt?! You can purchase it at a pharmacy. Magnesium is the main ingredient in it. We are often told to soak in a tub with Epsom salt to help relax muscles. It is said that Epsom salt will be absorbed through our skin as we soak in the bath. However, this theory has not been proven. For myself Epsom salt makes me feel nauseous after. Doctors always told me it was because my body absorbs too much magnesium. You can read more about Epsom salt here.

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You can read more about magnesium deficiency here.

Vitamin d

Vitamin d deficiency is frequently seen in people with fibromyalgia. It is common to have lower vitamin d levels during the winter months. We produce vitamin d when sunlight hits our skin. There are many symptoms of vitamin d deficiency. Some symptoms include muscle cramps/soreness body aches, fatigue/weakness,exhaustion and decreased endurance – which overlap with fibromyalgia symptoms. A study revealed people with fibromyalgia who used vitamin d supplements reported reduced musculoskeletal pain and helped improve their quality of life. You can read more about the study here.

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You can read more about vitamin d deficiency here.

One can try to up their iron, magnesium, calcium and vitamin d thorough your diet to try to raise the levels. For myself, I have decided to add in supplements as it can be rather time consuming to keep track of it through diet alone. You can discuss with your doctor how many mgs of each supplement you may need to take. The supplements can be found in many different dosages. You can even consult a pharmacist to help guide you.

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Before fibromyalgia is diagnosed, many other conditions should be ruled out. There are many conditions that can mimic fibromyalgia!

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Polymyalgia rheumatica

Polymyalgia rheumatica is an inflammatory disorder that can result in muscle pain, stiffness, muscle weakness, flulike symptoms and sleep disruptions. Before I got my diagnosis of fibromyalgia my doctor was debating whether my condition was polymyalgia or fibromyalgia. He was very certain I had one or the either. He ran a blood test to see if I had high inflammation markers to help diagnose. I had very little inflammation markers found – which led my doctor to believe it was fibromyalgia. One can still be diagnosed with polymyalgia even if there is low inflammation found. Polymyalgia can be treated with a corticosteroids.

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You can read more about polymyalgia rheumatica here.

Rheumatoid arthritis.

Rheumatoid arthritis is an autoimmune disease. It is also an inflammatory disease. In rheumatoid arthritis the lining of your joints is affected. It causes painful inflammation that can lead to bone erosion and joint deformity! I originally went to the doctor because my finger joints were very painful and beginning to throb. My elbows were the same as my hands. According to blood test results, I was not showing signs of any autoimmune diseases and had a negative CPP result. A CCP blood test can usually detect antibodies present in rheumatoid arthritis. To be cautious my doctor referred me to a rheumatologist who screened me for RA. The rheumatologist did ultrasounds on both hands and my elbows. There was no evidence in my joints of any inflammatory joint disease being present. At this point RA was ruled out and the rheumatologist confirmed a diagnosis of fibromyalgia.

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You can read more on rheumatoid arthritis here.

Multiple sclerosis (MS)

Multiple sclerosis is a disease that affects the central nervous system ( brain and spinal cord). The immune system will attack the myelin sheath that surrounds your nerves. It results in inflammation and destroys nerve cell processes and myelin. MS can cause pain, fatigue, stiffness, numbness and tingling and more. Often times health care providers will order an MRI to help determine if it is MS. Multiple sclerosis can cause lesions to form on the brain and cervical spinal cord. My doctor agreed to order an MRI. We both figured nothing would show. Results showed one lesion on my brain stem – usually where MS lesions are found. I was referred to a neurologist. The neurologist repeated the MRI. no other lesions were found. The lesion found was most likely causes by my migraines.

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You can read more on MS here.

Lupus

Lupus can also be misdiagnosed as fibromyalgia. However lupus is an autoimmune disease. Lupus involves widespread inflammation throughout the body and affects many organs. Your immune system will attack its own tissues and organs resulting in inflammation. Lupus can cause fatigue, muscle pain, fevers, headaches etc. Doctors can run a blood test to check your ANA levels in your body. A positive ANA test may mean you have lupus. 97% of people with lupus have antinuclear antibodies (ANA) in their blood. Keep in mind Just because your ANA test is positive doesn’t always mean you have lupus. My doctor ruled out lupus as my inflammatory markers were low and My ANA was negative. The rheumatologist also agreed I did not have lupus due to all blood work indicating negative results. I know people who had a negative ANA reading and still got diagnosed with Lupus.

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You can read more about lupus here.

Chronic fatigue syndrome (CFS)

Chronic fatigue syndrome usually accompanies fibromyalgia. However, they are both completely different conditions. CFS symptoms can mimic fibromyalgia symptoms. Once again chronic fatigue syndrome is difficult to diagnose just like fibromyalgia. Fatigue does accompany fibromyalgia, but the fatigue felt in CFS can be worse and life altering. I have not been diagnosed with chronic fatigue, but I stand firm when I tell many health care providers that I have it. I suffer from daily sore throats, swollen lymph nodes, fevers, awake unrefreshed and any physical/emotional stress causes extreme exhaustion to result. This year I will be pushing the subject of CFS with my doctor.

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You can read more on CFS here.

Lyme disease

Lyme disease is caused by the bacterium borrelia burgdorferi. People can contract it from ticks. Lyme has many fibromyalgia symptoms such as muscle/joint aches, swollen lymph nodes, headaches, fatigue, and rashes. In Canada it can be very difficult to get tested for Lyme disease. We do have testing for it, but I often hear it is not very reliable. Many people will seek Lyme testing in the USA or pay to see a natural path who can test for it, but it is sent to Germany to actually be tested. I often hear that even if it does come back positive, health care providers still so not accept the results. Maybe where you live, you have better options to being tested for Lyme disease.

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You can read more about lyme here.

Thyroid diseases

People with hypothyroidism may display symptoms of fibromyalgia such as fatigue, depression and muscle/joint pain. Hypothyroidism results when your thyroid doesn’t produce enough hormone. A simple blood test can confirm if you have hypothyroidism. It will test your TSH levels. (thyroid stimulating hormone) My doctor quickly ordered blood work, which indicated my thyroid was working as it should.

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Read more about hypothyroidism here:

Hashimoto’s disease can also be mistaken for fibromyalgia. Hashimoto’s is actually an autoimmune disorder. A health care provider can order a test to see if there are specific antibodies in your body. The antibodies created by your immune system attack thyroid cells as if they were bacteria or viruses – leading to damaged cells and cell death.

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Read more about Hashimoto’s here:

I am sure there are possibly more conditions that can be mistaken for fibromyalgia. However, these are the ones that come to mind. I’ve had many of these conditions ruled out from blood work. Many are autoimmune diseases and my blood work indicates no autoimmune diseases detected. One can still be diagnosed with an autoimmune disorder with negative indicators – but in my case it has been ruled out.

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People with fibromyalgia can develop trochanteric bursitis – which results in swelling and hip pain.

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Have you ever heard of trochanteric bursitis? It is common condition that can form in people who have fibromyalgia. Trochanteric bursitis affects the fluid filled sacs (bursae) found between bones and soft tissues of the joints. The outer lining of the bursae becomes inflamed. I have recently had a lot of hip pain through the night, which prevents me from sleeping. No matter what position I try to sleep in, both hips ache with pain. I decided to research ” fibromyalgia and hip pain – and trochanteric bursitis was the first condition that showed up on my browser. After reading about bursitis – it sure sounds like this could be what I am experiencing. I will be getting it checked by a doctor in then near future.

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What are the symptoms of hip bursitis?

  • Joint or hip pain
  • pain in the hip , buttocks and thigh
  • Pain when laying on the affected side ( in my case it is both sides)
  • May have soreness when you push on your hip area
  • Hip pain taking part in certain activities
  • Pain when you walk up stairs
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For myself I find my hip pain worse when I am trying to sleep. I tend to sleep on my side, so there is always pressure on my hips. I wake up with one hip sore, so I switch to the other side. It eventually wakes me up from being so painful. It is a dull aching. I spend half my night trying to get comfortable. I even try to sleep on my back, but after I have pain on both sides of my hips, even that is too painful. My hip pain is not consistent, but I go through periods where it remains painful for weeks. By morning, it is difficult to stand up out of bed and aches on and off all day.

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Treatment of bursitis often requires one to rest and allow the swelling to subside. This is the most important part of healing. One must avoid activities that could make the bursitis worse. If you do not, the recovery time may become longer. Icing the areas will help the pain levels and help decrease inflammation. I did read you can use heat later on. Over the counter anti inflammatory medications such as naproxen can be used. Your doctor may even prescribe a prescription anti inflammatory. If you are able to add in stretches, it is recommended. People who suffer from bursitis often have a tight IT band. Fibromyalgia itself can also cause a tight IT band due to the muscle tension. If the above treatments fail steroid injections or surgery may be considered.

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When I speak to my doctor next week, I will have her assess me to be sure it is bursitis. I have been reading that bursitis and osteoarthritis can be mistaken for each other. I do know I have arthritis starting in my neck, but I’m unsure about my hips. My hip pain has only become a major issue in the last several months. I rarely had hip pain before this. The hips can also be a tender point area for fibromyalgia pain to attack. Always be sure to speak to your doctor first. Don’t assume it is automatically bursitis.

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Here is A link about bursitis and fibromyalgia!

https://www.news-medical.net/amp/health/Fibromyalgia-with-Bursitis.aspx

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Experts reveal people with fibromyalgia do not remain in deep sleep long enough to benefit the body!

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For those of us with fibromyalgia, we soon realize we do not sleep like we used to. Our sleep patterns change overtime. Most people with fibromyalgia eventually develop sleep disturbances. Do we really stop to think about what changes our quality of sleep?!

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People with fibromyalgia develop sleep patterns that remain choppy, inconsistent and leaves us feeling unrefreshed when we awake. Obviously chronic pain through out the night can continuously wake us up, but there is scientific proof showing people with fibromyalgia experience inadequate deep sleep. When we lack deep sleep, we may experience daytime fatigue, impairments to cognition such as slower thinking, reduced concentration and even muscle pain!! We experience sleep deprivation. A healthy person experiences a predictable sleep pattern -entering into each stage of sleep for so long and in a specific order. Deep sleep is the most important of all the sleep stages that take place.

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According to research, people with fibromyalgia do not spend much time in the deep sleep stage. The deep sleep we do get is often interrupted by “wakeful” brain waves that are normally only seen in a wakeful brain – known as alpha wave intrusion. The alpha wave intrusion seems to be connected to the stress response center. In healthy individuals the alpha waves are not active during sleeping. However, the alpha intrusions remain active in people with fibromyalgia, waiting to fight off a threat. This information takes us back to the flight or fight response. Our alpha brain waves are stuck in the fight response and “sleep with one eye open”. In 1975, Dr Moldofsky, was able to induce fibromyalgia muscle pain and fatigue in healthy college students. After a few nights of sleep deprivation, muscle pain and fatigue resulted. Both symptoms went away after they got deep sleep again.

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As we fall into deeper stages of sleep, our muscles cleanse themselves of metabolic debris. Experts state that in fibromyalgic muscles, there is an overabundant amount of “leftovers” because our muscles are constantly contracted. The contracted muscles do not allow for restorative rest needed to cleanse the muscles at night. Our brain also self cleanses itself while in deep sleep – removing harmful toxins. The build up of debris can possibly cause muscle twitches, pain and weakness to form.

Read more about deep sleep here.

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Doctors may suggest using medications that help a person stay in the deep sleep stage longer. I won’t list medication names here as depending on where you live, each medication may or may not be approved. I would advice you to speak to your doctor for more information. You can also work on practicing strategies to get a good nights sleep. You can find the list in my previous blog here.

https://fibrofighter.ca/2022/11/07/fibromyalgia-and-insomnia/

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What I took for granted before I got diagnosed with Fibromyalgia!

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Being able to get out of bed. Before being diagnosed with fibromyalgia, I always wished I could stay in bed just for ten more minutes when my alarm rang. When you live with fibromyalgia you soon learn just finding the courage to get out of bed every morning becomes overwhelming. Some days I get up and I find myself back in bed an hour later because sitting on the couch is painful, movement hurts and is unbearable or I cannot function at all. The chronic fatigue and pain can become very debilitating!

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Being able to shower and personal hygiene. Before I was diagnosed with fibromyalgia a shower was refreshing, a way to wake up and relaxing at the same time. Showering never felt like I was using any energy. Now, showering can be painful and exhausting. The longer I stand in the shower – my legs begin to ache and my feet and toes hurt with jumping pain. I never know where the pain is going to hit next. Washing my hair makes my arms ache, feel heavy and my fingers begin to cramp up. I often get out of the shower feeling absolutely exhausted and find myself laying back in bed to recover! I never thought I wouldfind myself having to rest after showering. Some days even brushing my hair hurts. The brush touching my scalp can cause pain and if I comb over a few knots in my hair it can trigger my brain to send out migrating wide spread pain through-out my body! Even brushing my teeth can hurt at times. My hands may cramp up and ache, and my back begins to throb from standing in front of the sink

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Being social. I was never an overly social person, but I still went out to visit friends. Living with fibromyalgia I have become a home body. I do still try to keep in touch with friends through text or a quick call. I do miss going out for dinner, concerts or just hanging out in general. Being social and interacting with others when living with chronic pain can become exhausting. Even carrying out a conversation is difficult at times as I suffer from brain fog and often search for my words.

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Sleeping without any issues or waking up feeling refreshed. Since I got diagnosed with fibromyalgia I have not been able to get a decent night sleep. I took part in a sleep study which revealed normal findings. The pain constantly wakes me up all night long, or insomnia decided to attack. I often lay in bed and experience “painsomnia”. – exhausted but in too much pain to sleep. Even when I do manage to get a full night rest, without waking up I wake up feeling exhausted and I can’t function!

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Grocery shopping. Before fibromyalgia, I used to automatically go grocery shopping every Saturday or Sunday morning to prepare for my busy week ahead. It just becomes a routine. Now to find the energy to drive to the grocery store is hard enough yet alone shopping. I have a difficult time pushing a grocery cart once it begins to fill with food. It absolutely exhausts me. After walking two or three aisles, the chronic fatigue sets in and it feels like I am dragging fifty pound weights behind me. I often have to rest the after shopping. Some times I can recover other times it becomes a movie day because shopping has proven to be too much.

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Standing and walking. We learn at such a young age to stand and walk. As adults, it just comes naturally. I was one of those people who was not in a rush to get my drivers license as I grew up in a small town where walking everywhere was feasible. I used to walk to the stores, work ect. Being diagnosed with fibromyalgia, I am lucky to make a 15-20 minute walk. My feet hurt when I stand and I get major pain in my back. I miss just being able to go for daily walks.

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Being able to work. Most people can’t wait for a day off of work to rest and just relax. I was like that before fibromyalgia. Now, I wish I could work! I’ve had to remain off of work due to the forever changing symptoms , pain and fatigue. Fibromyalgia is unpredictable! I miss socializing with coworkers, providing for myself and being independent. I do count myself lucky as I receive disability, but when on disability it is a fixed income that is lower then what I would make working full time! Cost of living continues to increase, but my monthly income remains the same.

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Being able to be physically active. I used to be someone who was always on the go – biking, hiking, walking ect. Now, I have a difficult time walking up a set of stairs or taking a walk for even 15 minutes. The first thing doctors or health care providers tell someone with fibromyalgia is to exercise. How do you exercise when you do not have any energy to do it?

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Being able to travel. Before fibromyalgia took a front seat in my life, I was spontaneous and travelled all the time. Now travelling takes alot of preplanning. It is exhausting having to imagine every single scenario that could cause chronic pain to increase or go out of control. I find even driving 10 minutes too much for me these days.

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Cleaning and laundry. We all hate cleaning and laundry! However it is part of life. When you factor in fibromyalgia, both tasks become overwhelming. I often try to break up cleaning into smaller tasks to make it manageable. After I vacuum and wash floors I am struggling with lack of energy, major fatigue and pain through out my body or stop many times to rest. I often find myself having to lay down for several hours after. Folding laundry causes my finger joints to ache and my arms feel like they are on fire. I have found myself hanging most of my clothing in the closet to avoid folding so many articles of clothing.

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Eating without pain. Eating a meal when you live with chronic pain can be challenging. Most times we eat and don’t really think about it. For myself I developed TMJ and my jaw hurts and locks if I bite down wrong or if I attempt to eat certain foods. I am often left with jaw pain after every meal. Some days even eating with a fork or spoon creates pain. To grasp the cutlery may cause my hands and finger joints to ache. I have been telling health care providers lifting food to my mouth and chewing the food makes me exhausted.

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How owning a dog can help people with Chronic Pain – such as fibromyalgia!

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When we have a chronic condition we often wonder how we will manage the responsibilities that come along with owning a pet. However, did you know pets can bring a sense of comfort for people living with fibromyalgia. Since I have dogs, I will focus my blog post around dogs. Dogs are often referred to as “mans best friend” for a reason!

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People who suffer from fibromyalgia can become isolated from those around them. Owning a dog can provide companionship. A dog can’t hold a full conversation with you like another human, but can help ward off loneliness. If you own a dog and you are like me, you will find yourself talking to your dog!

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Owning a dog can act as a distraction. No matter how much pain you are in, a dog always needs attention- Whether that is to feed, bath, throw a ball ect. My dog is still younger and gets acting silly. She races around the house acting like something is chasing her. It makes me laugh and takes away my focus on the constant pain I feel or any other fibromyalgia symptoms I may be dealing with. Even just sitting on the floor playing with my dogs helps distract my mind.

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Experts say that just ten minutes petting a dog can help lower stress levels. We all know that stress heightens fibromyalgia pain and symptoms. Apparently as you pet and interact with your dog, the stress hormone cortisol significantly drops. The drop in cortisol levels, lowers muscle tension that may be contributing to pain levels. Experts also report increased oxytocin hormone levels are seen. The oxytocin hormone seems to have pain reducing potential! Dogs are used for pet therapy for this reason!

Here is a study done on dog therapy and fibromyalgia! Click here.

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Owning a dog makes you have to get up and move/exercise. Even if you are only moving to let your dog outside – it still is movement! Often dogs will need a walk to help burn off energy. While taking the dog for a walk, you too are exercising! Even if it is just a 5 minute walk- you are still moving. Movement is important for fibromyalgia.

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There are instances where an individual living with fibromyalgia may qualify for a service dog. Service dogs are trained to help with many tasks. They can be trained to bring the person different objects – even medication. Some people with fibromyalgia experience balance issues and may walk with a cane. A service dog may be trained to retrieve a dropped can that the individual cannot pick up themselves. Service dogs are also trained to open and close drawers and doors and even bring clothing. The benefits of having a service dog are endless. These are just a few examples.

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Here are a few pictures of my fur babies!

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Having a chronic illness/condition is a full time job!

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If you have been forced to remain off work or given up your career due to a chronic condition, people often assume you don’t work! Having to live daily trying to manage the condition can actually become a full time job! A chronic condition is just that- chronic. There are many aspects that need addressing when you live with a condition that can become debilitating like fibromyalgia.

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Before we even get a diagnosis we are often already adjusting life so we can function better. As we slowly adjust, we sit and wait for answers. Fibromyalgia is not an immediate diagnosis and is a process. We wait for tests to be completed, referral letters to be accepted and in general waiting for answers to why we hurt so much. Waiting can actually become a full time job in itself. You must be prepared for any upcoming appointments. As we prepare and wait for these appointments we keep on adjusting our lives to be able to get through the days the best we can.

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Once diagnosed or even before, we have to learn how to live with a chronic condition. The life we once knew is no more and a new ‘normal’ needs to be found. One must learn their limitations and adjust life around those limitations. This is not an easy task! Nor does it happen overnight. It takes time. When you finally think you have it figured out, fibromyalgia decided to throw you an unexpected curve ball to knock you off track. New symptoms can arise daily and we are left scrambling trying to figure out a possibly remedy.

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Self advocacy takes a-lot of time, preparation and energy. Do you know how many hours I have spent writing down medical information to share with doctors?! Too many to even remember! There are many questions to ask doctors or specialists, symptoms to be logged, medication lists, possible treatment routes, ways to lower pain….the list goes on and on. If we don’t advocate for ourselves who will!

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Medication management. My medication list seems to grow longer and longer every year. It used to bother me that I had to be on so many medications, but I decided if I can function why should I be ashamed for using these medications!? I often thought people would think I was just a “drug addict”. Believe me, I tried to go medication free at the beginning of my fibromyalgia journey. The pain was too excruciating! I have daily medications I have to remember to take. I have to continuously manage how many days worth of medications I have left so I do not run out. When I go to the pharmacy, I often tell the pharmacy staff this is my second home as I’m there so much picking up medications and speaking to the pharmacists. Most medications I use leave behind side effects. These side effects also need managing. I may take medications to manage my pain, but these meds may leave behind numerous side effects to deal with.

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Having to manage 24/7 symptoms can become exhausting then to add in a flare up makes managing pain even more complicated. Most of us learn to manage our flare ups, but there are times where our flare ups appear and we are left scrambling to find new strategies to try to find relief. Even on our most excruciating pain day there is no break because we have to always “troubleshoot” our own bodies. A strategy used yesterday may not help the next day! It is rather exhausting to always try to manage chronic pain.

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Managing mental health. Often times when we are left dealing with a chronic illness, our mental health can become rather low. I know for myself I developed an anxiety disorder. We must learn to lower stress levels, anxiety and depression. High stress levels contribute to fibromyalgia flares and increased pain levels. We may need to take time through out the day to complete calming exercises to help lower stress and pain levels.

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Attending weekly appointments or treatments. Often times we are encouraged to attend a program such as a pain clinic. Appointments can possibly be daily (Monday to Friday) depending on how your program is set up. You may be required to work with a kinesiologist one day, psychiatrist the next day and so on. Attending the appointments can be exhausting and leave us with higher pain and symptoms to manage after the fact.

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Make sure to rest. People with a chronic illness such as fibromyalgia need to be sure to pace and rest when needed. Resting doesn’t sound like a hard task to do, but when it comes to fibromyalgia it can be. You need to learn to stop and rest at certain times. I decide when I need to rest from fatigue levels and pain levels. If I am cleaning and all of a sudden I notice dark bags under my eyes form, I know I need to stop and rest. If I do not, a flare up begins to start! Again this can be quite time consuming to be able to predict when to rest appropriately.

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Researching. Fibromyalgia is not well understood. Some doctors have a great understanding of fibromyalgia while others do not. I often find myself researching a lot on my own. Knowledge is power. Arm yourself with as much information as you can. Researching when you have a chronic illness that is forever changing daily can take up alot of time.

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Ten things NOT to say to someone with fibromyalgia or any chronic condition

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1. Don’t tell me everything will get better. Fibromyalgia is a neurological condition with no cure. We can’t predict the course it will take. Some people find improvement, while others may never find any relief.

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2. Don’t tell me to get more sleep because I say I’m fatigued. Did you know with fatigue, sleep does not improve the situation. Don’t get me wrong sleep is important, but with chronic fatigue, no matter how much sleep you get you don’t feel refreshed!

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3. Don’t tell me to exercise. We are constantly told to exercise to improve fibromyalgia symptoms. Exercise may help relieve some symptoms, but it is not a cure!

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4. Don’t tell me at least it isn’t fatal. It might not be fatal, but living with chronic pain 24/7 is life altering and debilitating. Fibromyalgia wears you down little by little. A chronic illness diagnosis is almost like getting a life sentence.

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5. Don’t tell me I should get a job to distract my pain. If I could work I would. If my doctor deems me not fit to work, that is just how it is going to be.

6. Don’t tell me you also have the same aches and pains as I do. We may both have back pain, knee pain ect, but chronic pain is more intense then your regular sore back from sitting too long in an office chair.

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7. Don’t ever tell me it is all in your head. This comment shows me lack of respect and understanding! If you must know it is all in my head – its a neurological condition!

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8. Don’t ever say you are too young to have fibromyalgia. Age has nothing to do with it. Even children can be diagnosed with fibromyalgia!

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9. Don’t ever say fibromyalgia isn’t real. If fibromyalgia wasn’t a real condition doctors would not be diagnosing so many people with it. There is also research to back up fibromyalgia does exist. It is just not well understood!

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10. Do not ever tell me I don’t look sick! Fibromyalgia is an invisible condition – with over 100 symptoms.

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Why do some doctors stigmatize fibromyalgia!?? My personal experience!

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Why is there such a stigma attached to fibromyalgia!? Why do some doctors believe fibromyalgia is a real condition, while other doctors do not accept fibromyalgia as a diagnosis!? I was lucky that the doctor I first started to see in regards to fibromyalgia had an in-depth understanding of it and was supportive over the last 2.5 years. My doctor relocated last spring and I have been left seeing walk in clinic doctors at different clinics. I find it absolutely insulting the way some of the doctors reaction to the fact I have fibromyalgia. I often feel like having a fibromyalgia diagnosis on my file, red flags me right away.

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I recently had to visit the local hospital due to the fact I had severe lymph node pain in my neck. After a three hour wait in emergency, the doctor spent literally 40-50 seconds with me in the exam room. He began asking me questions such as how long have I had a sore throat, cough, swollen lymph nodes and fevers. Any of us who live with fibromyalgia and chronic fatigue often suffer from all the above daily. I told the doctor I had fibromyalgia and his whole demeanor changed after mentioning this to him. He got frustrated that I could not answer his questions and soon dismissed me from the exam room after I told him a second time I could not verify how many days I ran a fever. Dismissed me without even addressing my sore throat. I got left sitting in a dark waiting room by myself where my anxiety began to rise. I left the hospital untreated and hysterical. I believe the fact I mentioned fibromyalgia made him think I was just at the hospital to pill shop or that my pain in my lymph nodes was not severe and made up. I would say this was the worst health care I have ever received in my life. I rarely go to the hospital, but the pain in my lymph nodes in my neck was so severe all I could do was sit and cry. At that point, the lymph node pain was more severe then my fibromyalgia pain when I am in a flare!

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Later that morning I decided to attend a walk in clinic since I had no luck at the hospital. A clinic I had never gone to. A clinic where the physicians do not know my file and severity of fibromyalgia. The doctor did address my lymph node pain, but was more focused on the MRI results I had over a year ago. I had to keep repeating over and over that my MRI results were being overseen by my neurologist and to not worry about it. He soon found on my file that I have fibromyalgia and then told me my lymph node pain was caused by anxiety. There is a belief that anxiety can cause enlarged, swollen lymph nodes, but all the articles I read state its a highly controversial subject. There isn’t a medical connection between lymph nodes and stress. Lymph nodes function to fight off an infection. They do not swell to fight off anxiety. Again I left the clinic without treatment of my swollen painful lymph nodes. Instead the doctor concentrated more on my fibromyalgia and the fact I have high anxiety. His advice- lower your anxiety and the lymph node pain would reside. I actually had no anxiety until the hospital incident earlier that morning.

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This morning I decided to go back to the clinic for a second opinion. I finally was heard. I have strep throat, tonsillitis and my right ear was starting to get infected!! That was three days since I saw the other two doctors. I had been sick for awhile, since these infections don’t just appear over night.

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In the past I have also had to see different doctors for prescription refills and have to explain and defend why I am on each and every medication. If these doctors would look at my file, they would see these prescriptions have been in use consistently and prescribed by the same doctor before he moved. Some doctors feel like we are pill shopping, when we are not! I have left the clinic without prescription refills because the doctor did not want to refill them. Thankfully my neurologist stepped in and gave me 15 months worth of refills on several medications.

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Why is it I have a difficult time getting my medications for fibromyalgia refilled, but someone else who needs the same drug for depression not have an issue!? Because fibromyalgia is stigmatized by many doctors. Sadly in this day and age I thought the stigmas would have been eliminated by now. Why should people with fibromyalgia defend their medication list each and every time they see a different doctor!? The truth is we shouldn’t have to. Nor should we feel like we have been denied care because a physician doesn’t understand fibromyalgia and continues to think it is caused by mental instability. After this experience, I was left feeling crazy, unheard and with high anxiety. I should not be left feeling unheard because fibromyalgia is marked on my file!

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How can family/friends support someone with Fibromyalgia ( or any chronic illness)

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1. In order to be supportive to someone with fibromyalgia or any chronic illness, you first need to understand what the condition is. Fibromyalgia is more then just chronic pain. Research is the best option to arm yourself with information. The web holds a-lot of knowledge at a click of a button. Just be aware of what sites you are reading, there are many misconceptions about fibromyalgia floating about. If your loved one is on medications – know that with the use of medications comes unwanted side effects. With knowledge comes greater understanding!

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2. Understand the pain cycle and pain scale of chronic pain. Chronic pain is not the same type of pain a sprained ankle brings. The pain from a sprained ankle will eventually go away. Chronic pain is just that- chronic. It will not heal or go away. I am left dealing with extreme pain that is debilitating. Did you know fibromyalgia pain is listed on the McGill pain scale just below childbirth!?

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3. Offer to help with tasks or chores around the house. Don’t automatically assume you need to do everything for me. I appreciate the help, but I still need to maintain a sense of independence. Fibromyalgia has takes away many things from me. Please allow me to continue to keep some independence, but at the same time offer help where you can. Even if you know a task I’m working on is going to possibly backfire and cause increased pain or symptoms to arise allow me to try. I often use these moments to evaluate my limits.

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4. Please know that living with fibromyalgia we grieve who we used to be. I miss the full of life, spontaneous person I used to be too! It is said people living with any chronic condition, tend to go through the 7 stages of grief. I may be frustrated with myself, but it comes out as anger towards you. Let me say this now. I’m sorry for the way I react somedays. Frustration can get the better side of me. I am still learning how to accept my illness.

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5. Chronic illnesses can cause a flood of emotions and can begin to effect our mental health. Please watch for signs of anxiety or depression quietly. Living in extreme pain and dealing with all the other symptoms cause mental exhaustion. I may not connect how living with fibromyalgia affects my mental health early on. If you notice any signs of anxiety or depression, please be gentle in telling me.

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6. Sometimes we just need someone to listen without judgement or opinions being put forth. As the saying goes, “Sometimes we need someone to simply be there. Not to fix anything or to do anything in particular. But just to let us feel that we are cared for and supported!”

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7. Know that we understand it is as hard on you as it is us. Chronic illness affects all involved. Please understand it will be a difficult road ahead. Support each other the best we can and try not to get angry with each other. There will be times where it happens. After all, we are only human.

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8. Please understand I am not my pain. It is not my fault that my pain levels and other symptoms arise at what seems like the most inconvenient times. I still want to live and enjoy life as much as you do. If we had plans to go do something and suddenly can’t I am not being difficult. Please remain flexible! Be realistic instead of having extremely high expectations when it comes to making plans.

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9. Please respect my physical limitations. Fibromyalgia is often accompanied with fatigue. I get fatigued very quickly. Know that my fatigue is not like your tiredness. My fatigue doesn’t go away. Some days I need to slow down or take a break. Just because I was capable of something today, doesn’t mean I will be capable tomorrow.

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10. Please take the time to believe what you see and what I tell you. I am not just making up symptoms, to share with you. My pain is real and so are all my symptoms I speak of. There is often a misconception that chronic pain suffers fake or exaggerate their pain. Don’t you think if I could choose I would choose to be happy, full of life and be who I once was – before the chronic illness over took my body!? I don’t enjoy being isolated from others and possibly have to be in bed all day long.

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12 ways I hide my Fibromyalgia Pain and other symptoms

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1. People with chronic pain learn to hide their pain well. You are probably thinking – pain is not visible. Pain itself isn’t visible, but when my pain levels are so intense – it makes me drop e to the floor and all I can do is cry. That is visible! Just because I have a smile on my face, doesn’t mean I don’t have pain. I have pain everyday – the only thing that changes is the intensity levels of the pain. The pain does not go away.

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2. I stay at home on my worst days. No one ever sees my worst days. I only tend to leave the house when I feel not too bad. Even doctors hardly ever see my bad days, yet alone friends. Since you only see me on my good days, you may think fibromyalgia isn’t as bad as it seems. If you take a few moments to speak to the people I live with – who witness my bad days head on, you may actually take a step back and realize how painful and life altering fibromyalgia can be.

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3. I often pretend the pain I have isn’t there. I may have pain in my knees, but try to walk and carry myself as if the pain isn’t there. When you see me at the store and stop to talk, you won’t know I’m having that extreme knee pain nor will you find I mention pain at all. Unless others experience chronic pain themselves, they will never understand what it feels like. It is not your everyday pain – it is worse.

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4. I use a lot of medications to drown out the pain so I can half function when I leave the house. I don’t mean just take a Tylenol. Tylenol doesn’t ease my levels of pain like it may ease your backpain. You should see the endless bottles of prescription medications I take daily. You may understand after seeing my “pharmacy” in the kitchen cupboard how I am able to half function. If I do not take these medications I can’t even get out of bed, yet alone function to leave the house.

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5. I force myself to be okay when I am actually not. I may tell you I’m ok, but inside my body wants to just shut down and collapse to the ground. When you see me, I may want to actually lay down like a 2 year old kicking and screaming in a temper tantrum, from the frustration that goes along with any chronic illness – but instead I force a fake smile upon my face.

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6. I often isolate myself from having to socialize with others. It is easier to stay home then explain to people why I do not work or why I have to leave a get together suddenly because I need to rest. I don’t like to explain to people why I don’t work and why I am not having an alcoholic beverage! To be honest socializing can become absolutely exhausting for people who deal with chronic pain 24/7.

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7. I hide the emotional aspect of fibromyalgia, I used to be embarrassed about the mental toll fibromyalgia has had on me. Chronic illnesses can create anxiety, depression and panic attacks to form. I bet when you talk to me you would never know I actually have an extreme anxiety disorder. It is being managed, but circumstances and pain levels can trigger an anxiety attack to take place.

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8. I usually give a short answer when Asked how Am I doing. It is too hard to actually explain how I am doing. I often say I am doing okay when I am not to avoid being told, ” I hope you feel better soon!” I have a chronic pain condition with no cure. Chronic means it will most likely not go away.

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9. I tend to hide my pain behind humor. I may be in pain, but I still can joke. Might as well joke instead of cry.

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10. When you see me you may think I dress the way I do to be comfortable. The truth is the baggy sweaters and sweat pants hide my bloated stomach. Many people with fibromyalgia also suffer from stomach issues. I am one of those “lucky” people.

11. People often ask why I don’t feel well. If I know they won’t be able to fully understand what fibromyalgia is I often say I must have a flu bug or a migraine. It is just easier then having to explain to people what fibromyalgia is and how it affects me.

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12. I often forget what I am saying and lose my train of thought. It is part of fibro fog, but I often joke it must be “old age ” setting in, instead of explaining why my cognitive functioning is affected by fibromyalgia.

Can watching horror movies lower Chronic pain levels? Do movies help improve mental health?

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I came across a few article that claims watching horror movies may help reduce chronic pain. I never thought watching a scary movie could actually benefit my pain levels. I have never heard of this theory before. However, the information presented in both articles does make sense to why it may reduce chronic pain

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According to both articles I read on pain and horror movies, both writers explained that according to experts and research our brain is not capable of producing pain and fear at the same time. Our brain may flicker back and forth between pain and fear while watching a horror movie. I tried to look up this theory, but I was not successful in finding any information to back this up. However, the article did mention Professor Lorimer Moseley’s name. Moseley is a professor of clinical neurosciences and an expert in pain from the University of South Australia. He has published over 300 papers and 6 books. You can also find many of his videos on Youtube. It appears Moseley has a podcast – the information could have been shared in one of his podcast presentations.

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When we watch horror movies, our body enables our fight or flight system. It is believed that in fibromyalgia our system is stuck in the fight mode. When our fight or flight system is triggered properly, our body releases more endorphins, adrenaline and dopamine. The boost of adrenaline causes your heart to race and pump more blood to your muscles. In a previous blog I posted I shared that Dr. Liptan stated that in fibromyalgia there is lack of blood flow to the muscles of people with fibromyalgia. Would the increased blood flow, lower pain levels? Endorphins help relieve pain, reduce stress and improve over all well being. If we experience an increase in endorphins while watching a horror movie, could this be why people with chronic pain feel lower levels?! As for the increased dopamine levels, it can possibly help lower chronic pain. According to evidence, a disruption to normal dopamine levels plays a role in fibromyalgia.

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Does watching a horror movie really lower pain levels? Or does it just make us watch intensively and we are distracted from the pain at the time!? I don’t have the answer, but it would be easy to trial this theory! Turn on some horror films and test it out yourself! Movies in general help us escape from reality for a short period of time.

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Watching movies can also benefit our mental health.

1. Relaxation. Ever had a movie night in on a Saturday evening? I have. Often times when I need down time, I will turn on a movie. We all need to sit back and relax every so often.

2. Movies can be a mood booster. Everyone likes different types of movies, but a good comedy movie that can make you laugh the entire movie boosts my mood. How about you!?

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3. Reduces stress. Back to the comedy movie – laughter helps reduce levels of hormones in the body responsible for stress.

Did you know there is actually movie therapy ( cinema therapy) !? It is usually directed by a therapist for therapeutic purposes. Read more about it here.

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Fibromyalgia and Brain fog…Aka Fibro fog.

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When people think of fibromyalgia we often associate just pain with the condition. Fibromyalgia goes beyond pain and causes a person to have brain fog which affects a persons cognitive ability. We call this fibro fog. In my opinion fibro fog just on its own is debilitating. Think about it, how does mental cloudiness, reduced ability to recall words and issues processing information not become disabling!? Brain fog soon begins to drastically impact your daily life.

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I was reading “The Fibro Manual” written by Dr. Liptan. A study revealed that fibromyalgia patients demonstrated decreased blood flow in areas of the brain important for cognition and increases blood flown in pain processing areas. Dr Liptan states that the brain thrives on blood flow. Adding in a gentle exercise routine will help increase blood flow to your brain , resulting in increased cognition and memory. I found this information rather interesting. This is a process. You can’t exercise for a few days and expect to see results.

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Fibro fog symptoms ( just to name a few)

  • Difficulty holding conversations
  • Not being able to access stored language information efficiently
  • Lowered ability to think quickly ( worse in distracting environments)
  • Forgetfulness
  • Problems remembering new information
  • Impaired ability to to concentrate
  • Lower ability to remain focused
  • Fatigue will result
  • Losing your train of thought often
  • ect
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There are times where I find myself frustrated because I can’t recall words I am looking for. I can even be looking at the item and not be able to name it. Most of the time I tend to laugh it off. One day I thought to myself, why Get frustrated and angry with myself because I can’t recall a word!? Getting frustrated will only add extra stress to your body – stress is the worst thing to aggravate fibromyalgia symptoms. The people I am around often all know my cognitive struggles with brain fog. Fibromyalgia is a neurological condition so it is not surprising that it can alter a persons cognitive abilities.

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What causes fibro fog!? My thoughts

1. Pain levels. Having to live each day experiencing high pain levels can become exhausting and your quality of life will decrease. If our brain can misread pain signals, can our brain dysregulate how neurological pathways function within the brain – causing lower cognitive function!?

2. Lack of sleep. Not getting enough sleep can also affect our cognitive functioning. Most of us have experienced a poor nights sleep at one time or another. The next day it is difficult to think and function. People with fibromyalgia wake up often through the night because of pain. We may even develop other medical conditions which prevent us from getting a solid nights sleep. Insomnia and restless leg syndrome are two examples.

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3. Medications. Be sure to check with your doctor or pharmacist to see if any medications you are taking could be contributing to the brain fog symptoms.

4. Stress can also contribute to fibro fog arising. It is important to deal with any stress appropriately.

I’m sure there are many other reasons for having fibro fog but in my opinion I feel these are possible causes.

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How to cope with brain fog…

1. I use alot of sticky notes to write reminders on them. You can stick them wherever you need to. I will also use phone reminders when needed. There are many free apps out there. Utilize them! You just may need to write a note to remind yourself to check your phone! Haha.

2. Try to get enough sleep. Lack of sleep will not help fibro fog. Easier said then done, is what you are thinking right!?! Don’t worry I get it! Try to stick to a sleep schedule.

3. Work your Brain. Crosswords and word searches will make your brain work! They help improve cognition. Any brain games may help.

4. Break up tasks into smaller steps so you don’t feel overwhelmed. Try not to multi task as your brain can’t process everything you are trying to do at once. Trying to keep up while you multi task could make your fibro fog even worse. By breaking up tasks, your brain has time to process and is not overworked.

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5. If you suspect your medication may be causing brain fog to form, you may want to discuss possibly changing medications with your doctor.

6. Add exercise to your daily routine.

Here are a few of my fibro fog moments… Feel free to laugh. I won’t be offended!

1. Putting toothpaste on my razor instead of my toothbrush!

2. Stuttering while I search for words I am looking to use.

3. Spraying deoderant on my hands while looking at the lotion.

4. Creating a whole new language or words because I can’t think of the word I wanted to use.

5. While having a snack I sat down to work on a puzzle. i found myself eating the puzzle pieces instead of my food.

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6. Looking for my phone while I am using it.

7. Forgetting our keyless code to our house!

8. Ripping up some papers and throwing the paper in the toilet instead of the garbage beside it!

Fibromyalgia and temporomandibular joint ( TMJ)

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Fibromyalgia and TMJ are two completely different conditions, but seem to travel together. Many people with fibromyalgia often suffer from jaw pain and have TMJ symptoms. People with chronic fatigue syndrome are often seen to struggle with TMJ as well. High occurrences of TMJ have been reported with people who suffer from fibromyalgia – which can affect the jaw muscles, jaw joints and can cause myofascial pain to arise. A study revealed that many people who have a fibromyalgia diagnosis tend to grind/clench their teeth more then those who do not have fibromyalgia.

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Last spring I had gone to the doctor because my jaw was extremely sore, clicking and locking in place. I had heard of TMJ, but never experienced having it myself. It can become rather uncomfortable and very painful at times. This attack was caused by high stress levels. My doctor advised me that my job was to go home rest my jaw, apply heat and try to destress. However, the stressful situation was beyond my control! Since this incident took place my jaw has been clicking and locking ever since. On Boxing Day, I was eating popcorn, and my jaw decided to lock when I bit down and when I opened my mouth it forced it to unlock suddenly. The pain was unbearable. I don’t even have the words to describe how it felt. All I know is after I had an instant migraine. It is still extremely sore and my jaw feels out of place.

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Symptoms of TMJ:

TMJ can cause many other issues and symptoms to arise. Believe it or not a sore throat, is a common complaint by many. People can even experience pain behind their eyes – your jaw muscles are attached to the jaw from behind your eye sockets. Decreased hearing is also possible. TMJ can cause swelling in your jaw and jaw muscles. The swelling can interfere with your eustachian tubes – causing these tubes in your ear to be congested. Below is an image that lists quite a few symptoms that we may not consider being signs of TMJ.

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How to help relieve TMJ.

1. Heat or ice. Applying either heat or ice to the affected side of the jaw will help relieve pain and any swelling of the jaw joint.

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2. Avoid overuse of the jaw muscles. Try to eat only soft food and cut food into smaller pieces.

3. Stretching and massaging the area. If are able visit your doctor or dentist, they may be able to help guide you in exercises to help TMJ. You can also find some helpful videos on youtube on stretches to help heal and relieve the pain.

4. Acupuncture can possibly be used to help with TMJ. I do not know much about acupuncture.

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4. Over the counter pain medications may be needed to help relief pain. In some cases anti inflammatories may be needed or a muscle relaxant.

5. Depending on what is causing your TMJ, you may need a mouthguard. Some people form TMJ from grinding their teeth.

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6. Lower stress levels. If you are experiencing high levels of stress, clenching your terth together from being tense will cause TMJ ton arise. Take time for self care or use some stress relief techniques to help ( deep breathing)

https://pubmed.ncbi.nlm.nih.gov/36152974/

https://mhnpc.com/2021/07/13/fibromyalgia-tmd-relationship/

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Fibromyalgia. Listening to ten minutes of music a day can possibly lower pain levels…

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When I first started attending sessions with an occupational therapist a few months ago she directed me to listen to ten minutes of music a day. Not just listen to music in the background, but listen to the actual lyrics. I was so confused because I thought an occupational therapist would help me brainstorm strategies to help make tasks easier to complete. Music therapy is often used in many circumstances – even to help chronic pain sufferers.

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Music therapy has many benefits. It can help lower stress, reduce anxiety and can be used as a motivator. Do you ever turn music on when you are cleaning or working at completing another task!? Music motivates us! Music has many different genres – each genre has a different sound, beat and speed. Everyone likes different types of music . I often have music playing during the day. Music often brings me comfort and helps me relax.

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Scientists actually conducted a study on how music could benefit people with fibromyalgia and the findings are rather interesting. The study revealed that music helps reduce pain and increases functional mobility. The increased functional mobility seemed to be highly related to the music induced analgesia. Researchers found that self selected music proficiently decreased pain levels versus music selected by the researchers for the patients. In other words, listening to music you enjoy helps decrease pain levels. In another analysis researchers found that there was a significant decrease in pain from day 1 to day 14. The participants in the control group – there was no significant decrease in pain. Listening to music you enjoy also releases opioids into your brain and spreads through out your body. This acts as a natural pain reliever – reduces pain levels while you enjoy music.

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You can also use music as a means of meditation. I often listen to music when I walk. I was told listening to the lyrics attentively can act as a way to meditate. Meditation doesn’t always have to be sitting with your legs crossed with your eyes closed. I also used the music lyrics as a way to be more mindful. Instead of allowing my thoughts to take over, I concentrated on the music lyrics. Music is a great way to lower stress, anxiety and is proven to help stabilize one’s mental health. Experts often say people with fibromyalgia need to learn routes to help lower stress levels. If you enjoy music, why not use it as a way to help calm your mind!

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For more information on this study visit: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3920463/

https://pubmed.ncbi.nlm.nih.gov/26245724/

https://www.apmaugusta.com/blog/listening-to-music-and-relieving-pain

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Does fibromyalgia weaken the immune system? According to researchers it does!

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Does fibromyalgia weaken our immune system?! We are usually told it doesn’t, but sometimes I wonder how accurate this information is. Doctors never seem to share the studies done on fibromyalgia. Why is it when we do get sick, it feels 3x as bad!?! At least for myself it does. Fibromyalgia seems to amplify whatever illness you are battling off at the time. I also find that it takes me longer to recover. I just got the news yesterday that I tested positive for strep throat. I’ve had strep throat several times before my fibromyalgia diagnosis. Now it feels like the symptoms of strep are worse. I know the strains of the strep virus change and alter overtime and become stronger, but I also feel like my body does not handle getting sick very well anymore.

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Does fibromyalgia cause our immune system to be weak!? Even though we are told by doctors that fibromyalgia doesn’t weaken our immune system, are our doctors familiar with research and studies being done on fibromyalgia?!! According to a study completed, various reports prove that fibromyalgia does in fact weaken our immune system. A study revealed that patients with fibromyalgia were exhibiting higher white blood cell count and cytokines ( immune cells) then people without fibromyalgia.

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A similar study reported that fibromyalgia weakens our brains immune system. A reduced blood flow to the brains pain center results and affects neuron receptors. This will lead to increased pain , and higher stress levels. Your immune system will become weak and and will be incapable of fighting off bacteria.

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People with fibromyalgia often have lower cortisol ( primary stress hormone) levels. Lower cortisol levels cause an increased level of estrogen to form in the body. Estrogen is seen to have a strong effect on the immune system. When there are high levels of estrogen in the body, the immune system is more likely to have an autoimmune response. This series of events causes progestin in the body to decrease. When progestin is low our immune system may tend to flare a lot . The fluctuation of these hormone levels are know to weaken our immune system. ( 2021 study showed an immune response was found).

Other factors that can also lower ones immune system are lack of sleep which people with fibromyalgia often battle and chronic fatigue levels. When people with fibromyalgia get sick with a cold, flu, sinus infection or in my case strep throat, it puts extra stress on our body. The stress our body feels from being sick can trigger a fibromyalgia flare. The flare up can intensify both fibromyalgia symptoms and illness symptoms all at once making it feel like you are even sicker! It is best to prevent getting sick. If you do get sick, self care is needed. Be sure to take care of yourself!

https://southernpainclinic.com/blog/why-does-fibromyalgia-weaken-the-immune-system/

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Fibromyalgia – Yoga and Tai Chi. What do researchers say in regards to how well they help lower fibromyalgia symptoms

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We are often told activities such as yoga and tai chi are good choices for people with fibromyalgia. Our doctors or any other health care provider involved share this information with us in hopes that it will help ease our fibromyalgia. We rarely stop to question this information because all we want is some relief from the excruciating pain. However, do these activities really help improve fibromyalgia symptoms?

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I was one of those people who thought yoga could possibly help benefit me instead of allowing my pain levels to run my life. I immediately went out and bought a few books on yoga – beginners yoga and yoga for chronic pain. I also looked up yoga videos on Youtube. Now, I am not a yoga fanatic, in fact I find it boring instead of relaxing. I tried to get into yoga before my fibromyalgia diagnosis and never was successful. However, I thought if it would help relieve the pain, why not try to learn to like it. I was desperate for any relief I could find. I soon realized I couldn’t get into most of the yoga poses without extreme pain. I eventually gave up. I started researching yoga recently as I thought about trying it again. I found some interesting facts about yoga and fibromyalgia. Does yoga really help fibromyalgia!!?

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Yoga is often recommended because it is a gentle intervention to help stretch tight muscles and joints. Yoga can also help build up strength. According to a study in 2011, participants didn’t report a reduction of pain and fatigue caused by their fibromyalgia. In 2013, an analysis revealed yoga helped reduce sleep disturbances, depression and improved their quality of life. However, again researchers concluded there was not enough evidence to confirm a link between yoga and reduced fibromyalgia symptoms. As far as I can see, there has been no further studies done on yoga and fibromyalgia

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Conclusion – there is not enough evidence to prove yoga is an effective treatment option for fibromyalgia relief. Don’t get me wrong, yoga does have it’s benefits, but is yoga really the right route for people with fibromyalgia!? If it hasn’t actually been proven by scientists to help reduce fibromyalgia symptoms why are we being recommended to take part in yoga!? With inconclusive findings, researchers state yoga MAY help relieve fibromyalgia pain, but there is no solid proof! I would suggest try yoga to see if it benefits you. If it does, continue to take part in yoga!

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Tai chi on the other hand has proof it is an effective activity to help fibromyalgia symptoms. Tai chi combines meditation, deep breathing and gentle slow motions. For myself I found tai chi too slow for my liking. I could never really get into the flow. Maybe this is because I find meditation exercises and deep breathing very difficult to do. Meditation requires a great deal of concentration which I lack. The study concluded that tai chi is as effective as aerobic exercises – if not a better choice for relieving fibromyalgia symptoms. The participants in this study filled out questionnaires at the end of the study. The information collected on the questionnaires reported decreased fibromyalgia symptoms – improvements in pain intensity, fatigue, physical function, depression, anxiety, morning tiredness and over all well being.

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My thought is even if there is not proven findings that yoga helps your fibromyalgia symptoms – if you find it helps your fibromyalgia, keep doing it! Everyone will benefit differently from each and every route tried. After all, all we want is some relief from the constant pain. There are many videos on yoga for fibromyalgia on Youtube that you can access for free.

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Here are the links to the studies carried out on yoga and tai chi:

Yoga study https://pubmed.ncbi.nlm.nih.gov/22398352/

https://www.medicalnewstoday.com/articles/315142#What-the-research-says

Tai Chi study

https://www.nccih.nih.gov/research/research-results/tai-chi-has-similar-or-greater-benefits-than-aerobic-exercise-for-fibromyalgia-study-shows

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Why does fibromyalgia cause skin rashes!?!?

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Do you get random skin rashes with fibromyalgia!? These rashes can be painful, bumpy, raised, itchy and you may even experience your skin crawling. I often experience these rashes. I even broke out in a fibromyalgia rash just sitting at the doctor’s office. Since I was already at the doctor’s office I decided to show my doctor the rash that appeared out of no where. My doctor thought I had been scratching the area, but I had not scratched it once. It appeared red, inflamed and felt hot. I was always so puzzled to why I got random rashes. Sometimes the rashes look like heat rashes, but are actually not caused by sweating.

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Not everyone with fibromyalgia will develop rashes, but many people do. Rashes can appear at anytime anywhere on the body. Some fibromyalgia rashes can become so sensitive it is difficult to even sleep. If you are like me you often wonder what can cause these rashes to appear. The exact cause to the rashes has never been determined, but there are several factors that may contribute to a rash arising.

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Possible causes of why fibromyalgia rashes appear:

1. Medications you are on to help treat your fibromyalgia symptoms could be the culprit. Talk to your doctor of pharmacist to discuss whether your medications could possibly be causing the rashes to appear. I would advise getting any rash checked if you are unsure.

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2. Signals in your central nervous system (brain, spinal cord and nerves). Your brain could possibly be sending out “itch” signals to the nerves in your skin. Your skin will become oversensitive. The result of your skin becoming oversensitive will create a sensation of itchiness.

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3. Chemical imbalances. A chemical imbalance in the brain could trigger a rash to appear. When you scratch an itch your brain will respond by releasing serotonin which helps stop the pain or itchiness. However, the more you scratch the more you itch. The more scratching and itching you do the more serotonin levels increase. The itching and scratching cycle can possibly lead to worse skin pain linked to fibromyalgia. Researchers completed a study on mice that showed the release of serotonin made the itchiness in mice worse. The higher the serotonin levels are the more you itch which then results in a rash forming.

Food for thought… there are a lot of medications used to lower pain levels which have serotonin in them. Do these medications create the same response?!? The higher the dose, the more serotonin levels we have causing a rash to form?!?

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4. Is an immune response responsible for creating the rash?! If this is true your immune system believes the proteins under your skin are foreign invaders. This would promote your immune system to release histamine which would increase skin sensitivity, which results in a rash. There has been no research on this hypothesis as of yet.

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How to manage a fibromyalgia rash. ..

1. Avoid scratching the rash even if it is itchy. The more you scratch, the worse the rash becomes.

2. Apply a cold cloth or compress. The cold will reduce swelling and any pain. It may even help reduce the itchiness.

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3. Apply a hydrocortisone cream. It will prevent a histamine reaction from taking place and help reduce itchiness and help relieve the rash.

4. Avoid using extremely hot water to shower. Use lukewarm water instead. Using lukewarm water will help soothe the rash.

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5. If you have dry skin, use moisturizing lotions to prevent itchiness. Dry skin can lead to a rash forming.

Don’t always assume your skin rashes are caused by fibromyalgia. Always take the time to go talk to your doctor or pharmacist. You could be having an allergic reaction instead. I bet just reading this article makes you itchy!

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Life with fibromyalgia – I can’t be spontaneous, but I can’t plan ahead either!

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Anybody who knows me, knows how spontaneous I used to be prior to being diagnosed with fibromyalgia. I used to jump in my vehicle and take random road trips. I would stop and site see everywhere along the way. I used to join friends at the last minute to watch their child play hockey or go for a coffee and chat for hours. I used to be able to plan my weekends days in advance. Reality – I can no longer do this living with fibromyalgia.

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Living with chronic pain makes making any plans difficult. Fibromyalgia is a very unpredictable condition. I find myself always cancelling plans because the pain slowly creeps in and takes over, or the chronic fatigue decides to attack. Better yet, a whole new symptom appears out of nowhere and I am left scrambling trying to figure out how to manage it.

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For example, if a friend calls me randomly asking me to go for lunch or coffee I will most likely decline because I just can’t do spontaneous anymore. I often decline due to the fact I fear while we are out, I will suddenly not feel good. I’m always scared fibromyalgia will attack while I’m out and I won’t be able to get myself home. This is not an excuse to not spend time friends. It is a true fear and my reality! When my fibromyalgia decides to attack, I know I have to go home immediately and lay down. If I do not I will send myself into a full blown flare that will last for days. Even if I do accept the invitation, it takes a lot of planning. I have to make sure the restaurant has softer chairs or booths because seating without cushioning makes my body hurt. I have also developed a sensitivity to noise and smells. If the music is loud or there are a lot of people talking in the background – it becomes overwhelming and my anxiety levels begin to rise.

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Even a planned relaxing weekend away can be exhausting. Travelling when you have a chronic illness takes a lot of preparation. Most people when they travel take clothing and toiletries – maybe a few other items. Pretty easy right!? Packing when you factor in a chronic illness takes way more planning. It is almost like I need a whole suitcase to accommodate my “pharmacy”. I have to pack so many different items just in case the pain decides to attack or any other symptoms I suffer from arise. From different sized heating pads to neck pillows all have to be packed. I have a full cosmetic bag of medications I have to take along. I dare not leave any behind because I know what will happen if I do. The one bottle of muscle relaxants I use as last resort I will need the next day! By the time you run every possible scenario through your head – and pack all the necessary items you are exhausted just from packing and mentally drained. I tend to pack days in advance so it isn’t all rushed right before we leave.

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Friendships are often lost due to the fact that we can’t plan ahead nor be spontaneous. Please know that if I have agreed to meet up for a coffee and suddenly cancel – it is not on purpose. I am not just making up an excuse, or avoiding you. Fibromyalgia truly does run my life. You may not be able to see how sick I feel. If I try to make plans with you it is because you are important and I value our friendship. A friend of mine called me and as per usual I declined going out for supper. Instead she brought supper to me and we had a great visit!

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What happens if you start your day with selfcare….

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When I got diagnosed with fibromyalgia I bought the book “Let that Sh*t Go” – written by Nina Purewal and Kate Petriw. This book has been an eye opener and has helped me look at life differently. In one of the chapters they write about how self love is selfless. The chapter begins by having you imagine that you just woke up and so many thoughts begin to flow – listing off everything you need to do that today. Instead of getting ready and jumping right into that to do list, what if you started your day off with something you absolutely enjoy like reading a book for 30 minutes before begin that long list of yours?!! How do you think the rest of your day would pan out!?!

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I decided to put it to the test to see if it really made a difference. Instead of worrying about housework, what I would cook for supper, ect – or in my case what wouldn’t get done due to high pain levels and fatigue, I allowed myself to watch an episode of a favorite tv show, listened to music or a couple chapters of my audiobook. I found taking time to start my day this way made a huge difference. I was able to handle most high pain days a little better. Not everyday, but most. Being on disability, my schedule allowed me to be able to do this. I know lots of you reading this may not have the opportunity to do something just for yourself first thing in the morning, but what about a few small things throughout the day? Even calling your best friend for 5 minutes can be considered self care or take a minute to take a deep breathe in and out. The authors of this book, explain the purpose of starting your day by doing a self care activity, is so that you don’t start your day overwhelmed and anxious. Instead of trying to pour from an empty cup, you start your day with a full cup. For those of you who have not heard this saying, it basically means you can’t take care of others ( or in this case your to do list) unless you first take care of yourself!

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I believe the saying is true to its words. How can you go to work and be productive, care for your family, coach hockey, be supportive to friends ect. if you are running on empty all of the time?!? The answer is you can’t – or at least not effectively. Not taking time for self care actually has many negative effects. We will notice that when we get run down, and don’t stop to take a break, we often get sick more often. When we don’t slow down, we feel overwhelmed, exhausted and anxious when things don’t go our way. At least I do. Being stressed can create tense muscles and headaches to form. For people with fibromyalgia, adding tense muscles from stress is not going to help our pain levels, but will result with increased pain.

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Self care is a very important aspect in anyone’s life , but for those who have a chronic illnesses such as fibromyalgia, it becomes necessary for survival. Life gets so hectic that many people forget to incorporates self care routines into their lives. Making time for selfcare has proven to be beneficially. Self care helps reduce or eliminate stress, anxiety and depression. It can also increase your mental health and self esteem, along with improving your physical health. These are just a few benefits to practicing self care. There are many other benefits.

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Taking some time for yourself, will help you be in a “happy zone” which then tends to have a trickle down effect. Ever had one of those days where everything goes wrong? One incident after the other seems to take place? Now imagine yourself starting that day over, but starting it by doing a self care activity first. You begin your day with your cup full. The result will most likely be that you will handle your day completely different. The coffee you spilled all over your meeting notes in your office may not seem like such a big deal. Your child missing the bus home may not throw you over the edge. Why? because you took the time to start your day by taking care of yourself!

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Why does Fibromyalgia get worse in the winter? Winter hack….

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Why does fibromyalgia get worsen in colder weather? Many fibromyalgia sufferers report that they experience heightened symptoms and more flares during the winter months. I’m also one of those people that the cold weather affects drastically. As soon as fall begins the fatigue gets extremely bad, so bad that I have a difficult time functioning to complete simple tasks. Once the fatigue sets in the pain slowly increases. Each day that goes by the more pain I experience. With the increased pain, many sleepless nights result and the chronic fatigue sets in further. The fatigue causes a whole other set of issues such as daily sore throats, fever, swollen lymph nodes and migraines. The list goes on and on. What really causes fibromyalgia to become worse in the winter?

My thoughts:

1. We are less active during the winter months because of the cold weather. At least I know I am. This year I have an intolerance to the cold so I tend to stay home more. Even walking from my vehicle into a store leaves me chilled, and takes me forever to warm up. This winter I’m trying to go swimming to see if it lowers the pain levels. Swimming is always recommended to help fibromyalgia pain. I am also utilizing the mall as a place to walk since its too cold out for me to walk outside. Could lower activity during the winter be the cause to why we hurt more!?!

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2. Changing weather. I find our weather changes so drastically over the winter months the last few years. The changes in weather will cause the barometric pressure to also change. One day we will have -30c weather and then the next day it can be -2c. Barometric pressure has been known to irritate sensitive nerves in ones body( usually at lower readings). Could this contribute to the increased fibromyalgia symptoms?! I don’t have the knowledge to explain further. I am still currently doing research on barometric pressure. I just know weather affects my fibromyalgia drastically.

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3. People with fibromyalgia often suffer from anxiety or depression. Not everyone with fibromyalgia will, but lots do. Research often reports higher cases of anxiety and depression caused by lack of sunlight during the winter months. Can anxiety and depression heighten the symptoms of fibromyalgia? It sure can! When one experiences anxiety or depression, it results as a stressor to your body! People with fibromyalgia will know that stress to the body will create more symptoms or flares to form. If you didn’t know, you do now.

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4. If you have arthritis in your joints, cold weather can cause joints to become inflamed. The inflamed joints can make fibromyalgia pain feel even more intense. I often wonder if I have arthritis in my hands. I had an MRI done to rule out MS and the MRI revealed I have the start of arthritis in my neck, so I wouldn’t be surprised if I have it in other joints as well.

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Hacks to get through winter the winter with fibromyalgia…

1. Dress in layers! I live in Canada so our winter months can be brutally cold. We go through extreme cold snaps where I’ve seen -50 c cold warnings. If you have to go out in such cold temperatures, I would recommend layering clothes. This is the first year I’ve bought insulating pants to wear under my clothes. Avoid getting a chill is the best prevention.

From one of my favorite Christmas movies. “A Christmas story.”
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2. Hand and toe warmers. These can be a life saver when it is extremely cold. You can tuck these warmers into your gloves to keep your fingers from getting cold and put them in your footwear as well. Almost like a mini heating pad.

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3. Heated gloves. When I was shopping at a few stores I noticed there are various winter mittens and gloves you can buy that have rechargeable heaters built into the gloves. I do not own a pair, but next winter I think I will invest in a pair!

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4. Stores also sell heated winter coats now. Same concept like the heated gloves. Small Rechargeable heated devices are located through the coat. Only problem is they can be very pricy!

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5. Buy winter footwear that has a temperature rating for extreme temperature. Last year I had bought a pair of Sorell winter boots, but my feet still got cold. My boyfriend bought me a pair of Bog winter boots and I can’t believe the difference this brand makes. Not only are they comfortable to wear, but they are well insulated and have a rating of extreme cold weather to -50c!!

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6. Use heated blankets, heating pads or take a warm bath to help relieve the winter chill from your body. I’ve been using my heated blanket a-lot lately. It sure helps warm me up quickly and soothes the pain! Some people would rather have a hot bath to help warm up and relax.

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Can we make our brain not misread pain signals? Food for thought…

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Just a blog to make you think deeper. I attended an online fibromyalgia summit not long ago. Dr. Whitten spoke along side Dr. Murphree. Both these gentlemen treat fibromyalgia patients in the United States. The information in the video I watched made me think on a different level.

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Food for thought…

We all know there is no cure for fibromyalgia, but what about treatment options ?!? Finding a treatment or routine that helps improve your fibromyalgia symptoms can be tricky. Looking at my own journey I have realized I haven’t really ever found that treatment route that works – especially when symptoms appear when they feel like it. I feel like no matter how much I try to prevent fibromyalgia symptoms , I’m fighting a losing battle. I’ve come to realize that my body will do what it wants to do and it’s hard to rein it back. You learn to deal with your symptoms day by day as you never know which symptoms will be prevalent that day.

Question:

Fibromyalgia is considered neurological at this point, so how do we rewire our brain so we don’t feel pain so intense?

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If fibromyalgia is really caused by our brain misreading signals, how do we think we will be able to control it or change it? Ever been driving to the store and your mind wanders and you find yourself thinking about other things? “I really should finish that assignment for work. What should I buy at the store? I should really be cleaning. I can’t forget my best friends birthday on the weekend.” We usually don’t even realize our brain is thinking up thoughts without us thinking. Interesting, isn’t it? This is our chatty brain talking. If we cant even shut off our chatty brain, how do we make our brain not misread signals ?!! Technically we can help limit our mind from wandering by “living in the moment.” It takes a lot of redirection of our thoughts. If our brain is stuck in fight mode (fight or flight) how do we rewire our brain so we can increase our pain threshold? I asked the following two questions to most health care providers I have seen and I have never been giving any answers. I don’t have the answers to these questions. Just a few questions for you to ponder over.

*”Pain threshold is the minimum intensity at which a person begins to perceive, or sense, a stimulus as being painful. Pain tolerance, is the maximum amount, or level, of pain a person can tolerate or bear.”

1. How does one raise that pain threshold without causing excruciating pain, chronic fatigue or flares to arise!?!

2. How does one create a successful treatment plan without the pain going out of control?

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I was often told to raise the pain threshold level by slowly adding time to activities or tasks, but I found this unsuccessful. Example: adding 30 extra seconds a week to your walking ability may help raise your tolerance slowly. Some people may add time to their activity every few days, but I found this to be physically demanding on my body causing increased pain levels to arise. For myself, this strategy would just backfire and cause me to flare, even if I stopped before I hit my pain threshold line. After three years of trying to incorporate this strategy, I can say it has failed. No matter the time increments I can’t seem to get passed being able to walk longer distances. Don’t forget, everyone’s body will respond differently. Just because it didn’t work for me, doesn’t mean it wont work for you. Give it a try! You can alter this strategy however you want.

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Health care providers mentioned using yoga to help raise the pain threshold. Yoga incorporates meditation, physical poses along with mental training. Many people without fibromyalgia take part in fibromyalgia and find it relaxing along with many increased health benefits. These benefits include increased muscle strength, flexibility, energy, weight reduction and energy. However, for people with fibromyalgia it can become very difficult to get in the “zone” to concentrate enough to take part in yoga. Being able to meditate can be difficult on its own, but factor in chronic pain and fatigue levels makes it even harder. For myself, I found yoga too slow for my liking and I couldn’t even get into half the yoga poses due to pain levels increasing. How does one find the benefit of yoga with difficulties concentrating and have limited motion /flexibility to get into the yoga poses is beyond me. I even started with the easy poses and had a difficult time. Yoga may benefit some people, but it wasn’t for me.

There may be more strategies out there, but these are the only two I was ever introduced to.

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If our pain, fatigue or flare ups increase drastically during treatment routes, I personally think that this is a failed treatment route. I’m not a believer in the “no pain, no gain” saying when it comes to fibromyalgia. First of all I live with daily pain, why would I do something that causes further pain to result!? My goal is to decrease pain levels not cause further pain from forming. When we live with pain levels that are 10/10 why would I want to “add to injury”?!? In my eyes, a successful treatment route should cause limited or no pain at the time being done. A successful treatment plan should not cause a flare up to form the next day. If it does, it means you have gone over your pain threshold level and pushed too hard. I am a firm believer in stopping before one hits that threshold level. You may want to try to push just slightly above that line to help try to heighten that threshold level. Successful programming or treatment routes should improve your ability to function and move better and not result in more pain. After-all the goal is to improve quality of life not hinder it further!

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In my experience, health care providers do not seem have current up to date information on fibromyalgia or have a lack of knowledge of the condition. Don’t get me wrong, some are very knowledgeable on fibromyalgia. The lack of understanding and knowledge often can lead to hands on treatments – which are often too aggressive. Example: A massage therapist may not even know what fibromyalgia is and when you go for a massage may not apply gentler pressure while massaging your back or legs – resulting in extreme pain levels. Many healthcare providers overlook the common issue in fibromyalgia – our bodies are hypersensitive. Dr. Whitten also mentioned this in his discussion.

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In order to help reduce fibromyalgia symptoms, we must find the right combination of routes for ourselves. This process can be very exhausting. Don’t give up! Try everything you can possibly try. Don’t be afraid to speak up if a health care provider mentions possible strategies that have maybe failed you. They may even be able to provide you with ways to modify those strategies that may help you find success!

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What can cause a fibromyalgia flare up…

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1. Weather changes or season changes. The constant changes in weather can contribute to fibromyalgia flares arising. Every fall my body responds poorly to the change of seasons – summer to fall. As the cooler temperatures set in, my aches and pains soon become consistent deep down to the bone pain. The colder the temperature drops the worse my pain levels become. The chronic fatigue becomes even more debilitating – making tasks even harder to complete. Getting out of bed in the morning itself is a challenge. I keep telling everyone that I need to win the lottery and buy my own tropical island. For myself warmer weather eases my pain levels. Other people, find heat difficult to handle. Everyone’s body is different. If I wake up with deep down aching during the spring and summer months – I often know the humidity is usually going to be high or if rain is on its way. Who needs a weather app when your body tells you the weather as soon as you wake up!!

2. Stress can also create a flare up to form. As we all know stress is not kind to our bodies, even without factoring fibromyalgia into the picture. Stress weakens our bodies, causing our body to become vulnerable. For people with fibromyalgia, the stress response tends to be heightened symptoms. It is very important for people who live with fibromyalgia to learn how to manage their stress in their lives.

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3. Over exertion. People with fibromyalgia or any chronic pain disorder need to pace themselves even on their good days. Its probably not a good idea to clean the house, go get groceries, run errands, and attend a friend’s birthday party in the evening. Trying to accomplish too much will cause over exertion and a fibro flare will result! I often make this mistake and then end up bed ridden for days to come.

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4. Illness. Even a common cold can create a flare up. People with fibromyalgia tend to have a cold or flu worse then people without fibromyalgia. Fibromyalgia can cause inflammation in the body and then add in a cold or flu that may cause further inflammation to form is unpleasant. I often wonder why when I get a cold it seems three times as bad then before my fibromyalgia diagnosis. According to my lab work my immune system is working as it should with no limitations detected , but yet it takes me longer to recover from the cold. Prevention is the key! Avoid being around other people who are sick.

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5. Lack of sleep. One bad night of sleep can cause a major flare up. This happens to me often as I have insomnia plus pain levels wake me up through out the night. Once I wake up, there is a slim chance of me falling back to sleep. For the last week, I have been waking up at three or four am, and then I can’t get back to sleep. It makes for a very long day. Even if I go to bed an hour later then I normally do the pain levels and chronic fatigue both hit a level of ten!

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6. Hormonal changes. Changes in hormone level can cause one to experience a flare. A women’s menstrual cycle, causes hormone levels to fluctuate. These fluctuations can be enough stress on the body to create a flare up! Thinking about it…is it really a flare up or does fibromyalgia just make a women’s menstrual cycle symptoms feel worse?!? I’ll let you be the judge of that question! I don’t really have the answer ro my own question. Just food for thought.

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7. Treatment changes. Adding new medications can cause a person’s body to react. Maybe the increased dosage your doctor prescribed caused some of your symptoms to get worse. I recently had a dosage increase of medication and I felt nauseated everyday for two weeks. I often get nausea, but this was worse. Even adding in a treatment pain such as light stretches can cause higher pain levels and fatigue to form. Any changes to your treatment plan causes stress to your body. The stress then is not tolerated well causing a flare up! I changed both my medications at the same time which caused extreme stress to my body. I probably should have increased each medication separately instead of at the same time.

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8. Travelling. For myself this is a major cause for a flare up. When we travel we have to sit in a vehicle or whatever means of transportation you take for extended amounts of time. This in itself is hard on your body. Sitting in a vehicle creates pain levels to increase which causes fatigue to set in from mentally enduring the higher pain levels. When you travel daily routines are also set aside for the day or even several days. After I travel I always go into a very bad flare up that lasts for days or even up to a week later.

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9. Individual sensitivities. This can range from certain scents, brightness of light, loudness or even triggered by an allergy. You may have other sensitivities. For myself I have become sensitive to scents. Stores that use sir fresheners or are using essential oils can trigger me to go into a flare. I have gone into several stores and had to immediately leave due to the scents. Loud noises is also a trigger for me.

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Fibromyalgia and the trapezius muscle….What did researchers find out in 2020…

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Have you ever had muscle pain in your upper back before?! This pain can run into your shoulders and neck. The trapezius muscle is located in your upper back and is considered one of the largest muscles in your body. Fibromyalgia pain often attacks this particular muscle. I’ve had several doctors tell me this and from personal experience I can confirm it as true. The first time I went to the doctor to get my upper back pain examined, I thought I had a pinched nerve in my neck. This area remains a very problematic area for me for over two years now. The muscle always feels like a pulled muscle and remains tight all the time- leaving major pain in my upper back, neck and shoulders daily. Whenever I go into a fibromyalgia flare, this muscle hurts even more and is an early indicator that a flare-up is on its way (at least for me). The trapezius muscle group can also affect people who do not have fibromyalgia. It is not specific to fibromyalgia.

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Warning signs your trapezius muscles may be causing you pain…

1. Limited range of motion. I often experience this. Turning my head right or left, or even to look up and down causes major pain. It may even hurt to raise your arms. Whenever I get an attack of this muscle, I can’t lift my arms to drive. Even raising my arms to feed myself becomes painful.

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2. Pain between the shoulder blades. This was my number one complaint when I saw the doctor. On a daily basis I have shoulder blade pain that runs up into my neck. It is very painful and makes doing anything near impossible. Motions such as vacuuming or washing the floor cause the pain between my shoulder blades to become worse.

3. Neck and shoulder pain is a common symptom to see. There again, the pain in these areas will contribute to limited range of motion.

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In 2020, fibromyalgia researchers conducted a study that involved the trapezius muscle. People who were diagnosed with fibromyalgia had the pressure in the trapezius muscle measured. A pressure gauge with a needle attached to the end was inserted into their trapezius muscle. They noted that the pressure in their muscles were almost three times as high compared to individuals who did not have fibromyalgia. Dr. Liptan, who has treated many people with fibromyalgia, explains that the pressure in the muscles recorded are just about high enough to the pressure in compartment syndrome. Compartment syndrome is considered a surgical emergency. You can read more about compartment syndrome here. The findings in this study could explain why our muscles are so tender and why we experience high muscle pain. Again, more research needs to be conducted. It does make sense. The higher the pressure, the more angry our muscles get! Here is the link to the study completed in 2020.

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I was researching the trapezius muscle the other day and came across a new term. Trapezius myalgia – “which is the complaint pain, stiffness, of the upper trapezius muscle. The term does not mean there is another disorder involved, but refers to a symptom of an existing underlaying condition. “Read more about it here.

What are the treatment options for trapezius muscle pain?!?

1. Heat or ice. For myself I tend to apply lot of heat. I have the heating pad on my upper back fairly consistently. Some people may find ice helps the area better. You can use whichever you prefer. I often spray a product such as Bio-freeze that is often used by physiotherapists. Its almost like icy hot that soothes sore muscles.

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2. If you google gentle stretches for trapezius muscles, there are a-lot of great Youtube videos out there that will show you how to gently stretch this muscle to find relief. Many physiotherapists have uploaded stretching videos to the web. Just be sure you are using a reliable source so you don’t cause further pain to arise.

3. People may often opt to go directly to a physio therapist. If you rather go to an appointment and have a physiotherapist show you how to relieve the pain do so!

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4. Medications. My pain was so high that I asked my doctor for some muscle relaxants. Over the counter medications were not helping the pain, but the muscle relaxants do. I try to only take the prescription if I cannot tolerate the pain.

5. Other people may turn to treatment options like dry needling or acupuncture if the pain area remains chronic. I have not tried either routes. More so because I am a chicken and hate needles.

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6. Massages are another treatment option. If you can handle a message you may wish to try one. For myself I would find a massage extremely painful. I can barely lightly touch the areas that hurt.

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7. Trigger point injections. The pain clinic I attended thought this would help me find some relief. I never tried it but know others have and found some relief. The only problem is the injections usually wear off before its time to go back again.

8. Rest the area. Try to rest the are to allow irritation of the muscle to ease off.

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There are many other alternative treatments that I could list, but I’ll only mention the above eight in my article. I’ve yet to find the right combination to relieve the pain long term. I’m currently researching and thinking of trying myofascial release treatment – which is similar to a massage, but concentrates on the connective tissue rather than the muscles. It is often used as a treatment option to help fibromyalgia pain. Everyone will have a different response to myofascial release therapy – some people say it helps tremendously, while other people find it causes more pain to form. Not all massage studios offer this treatment. You may have to experiment and attend a few sessions to see how your body responds. I hope the information in this article helps you find some pain relief!

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Is Fibromyalgia Progressive?

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We often wonder if fibromyalgia is a progressive condition. In all the articles I have read over the years, they all state that it is not progressive. Ever doctor or specialist I have spoken to also states the same. I on the other hand, believe it can be progressive. Some individuals may be able to successfully control their symptoms and their fibromyalgia almost seems to go into a “remission” and possibly only experience fibromyalgia flares from time to time. Other people may not be able to control their symptoms causing their fibromyalgia to become very debilitating. For myself, I have had very little success on finding the correct treatment routes to help relieve my symptoms and the pain and fatigue seem to get worse as the days pass by. I have also noticed many new symptoms appear over the years – symptoms that have no other reason to be present.

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I’m a member in many fibromyalgia support groups online and I’ve posed this question to many of these groups. These groups are worldwide with thousands of members. There are a lot of people who agree when I asked this question stating they too feel like their fibromyalgia has progressed and gotten worse over time. I know for a fact in my case my fibromyalgia symptoms are worse after three years then I was when I first got diagnosed. Sometimes I think covid restrictions played against me. I got diagnosed shortly before the pandemic began. Lots of assessments got cancelled and they never were rescheduled due to the restrictions being put into action. I feel like I missed out on the early interventions that could have been put into place to help me control my symptoms- swimming pools and gyms closed and in person courses on fibromyalgia were cancelled. We are often told swimming is an excellent activity for those with fibromyalgia as it is a low impact activity. How does one swim when there is no access to the facility?? I kept being told to go swimming by doctors. It became frustrating when they knew it was closed due to restrictions. I often wonder if I had been given the proper guidance if I would have been back on me feet a little easier. Instead my body desensitized itself and my fibromyalgia symptoms worsened over time.

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When I first got diagnosed the pain and fatigue interrupted life to a certain extent, but now I find fibromyalgia has interrupted every aspect of my life. At the beginning the pain only affected a few areas of my body, today it is very much widespread pain. Whenever I explained to doctors or any health care provider that I hurt and have pain head to toe they would always tell me this was not possible. I always responded with, “It sure is possible, because I feel it!!” I always have disliked when I get told my symptoms aren’t possible – for the fact they are not in my body to experience it and it always makes me feel like my pain levels are being downplayed by whoever makes these comments to me.

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As I stated, some symptoms have gotten worse over the years, but I still question why. I had a recent appointment with my neurologist and and I was explaining this to him. He stopped me at one point and stated that my prescription medications could also be contributing to some of the worsening symptoms. For example , irritable bowel syndrome is often common with people diagnosed with fibromyalgia. I’ve noticed an increase in stomach issues over the last six months. Now is it IBS or just a side effect from my medications being used. A-lot of my medications state they can cause diareeah as a result. Another example in my case is increased levels of fatigue. Now is this fatigue from fibromyalgia or a side effect from my medications?!? I do know a few of my medications can cause further fatigue to result, but to distinguish and pinpoint the cause is extremely difficult. One would have to wein off their medication to see if the fatigue improved. At this point I am not willing to take this action to find out.

Has anyone ever stopped to think about what happens to our bodies as we age? I often wonder if it is the aging process causing aches and pains to form instead of the fibromyalgia. Doctors often state younger people have a better chance to bounce back and get their fibromyalgia under control then people who are older. It proves to be true with injuries. For example, someone in their twenties will most likely recover from a broken bone faster than someone older. Can this same concept to applied to controlling fibromyalgia symptoms? I don’t have the answer, but it makes a person stop and think. When I had my MRI done on my cervical neck to rule out multiple sclerosis, the MRI reviled I have arthritis in my neck forming. The arthritis is forming at the location that I have constant neck pain- which I always thought was caused by my fibromyalgia. I often stop and wonder if my hand, foot and knee pain is arthritis forming too and fibromyalgia is not the cause of this pain. What is your thought on this? Being I’m only 38, I feel that fibromyalgia is more the culprit in my case. I used to be very active physically – always on the go and now it’s difficult to find the courage to go for a fifteen-minute walk.

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What I do know is everyday tasks have become very difficult and daunting to complete. Folding laundry creates a burning sensation to form in my arms and then results in my limb feeling like I’ve been holding a ten-pound weight in the air. Brushing my hair or my teeth often leave me with the same feeling. Walking upstairs can leave me feeling short of breath, cause my legs to burn and I feel like collapsing to the ground. Cooking can leave my hands with deep down to the bone aching and numbness to the point I drop everything. Anyways… you get my point. Everyday tasks can become difficult to complete. Many of these issues I face today were never present during early diagnosis or at least to this extent. Doctors often say fibromyalgia will get worse from being sedentary and letting the pain run your life. When I attended one pain clinic, I had the kinesiologist tell me, “I can’t have you sitting on the couch all day long.” He continued to tell me I was not trying to improve. Little did he know, I don’t just sit on the couch everyday doing nothing! He got frustrated that everything he tried was not helping improve my fibromyalgia. Just because a strategy is unsuccessful doesn’t mean a person is not trying!!

Conclusion: Is fibromyalgia progressive? i guess according to research and the medical field it is not, but I believe it can be! After living with fibromyalgia for myself I feel confident saying in my case it had been progressive. Enduring chronic pain, and other fibromyalgia symptoms continuously must have some effects on one’s body. The strain from fibromyalgia flares over and over decreases a persons quality of life drastically. What about you?!? What is your opinion?! Maybe you have never taken the time to assess your situation in this depth yet.

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