Tag Archives: chronic pain

The Struggles of Maintaining Friendships Amidst Chronic Illness: A Personal Journey

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We often form friendships with people who have similar hobbies and interests as we do. However, what happens when chronic illness takes away our ability to take part in those activities? Those friendships often cease to exist because we no longer have ” things in common”. This does not happen just with having a chronic illness – but at times friendships just tend to grow apart. Our hobbies and interests may change over time as well as our life goals – it is just how life goes.

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How do we make new friends when we have a chronic illness? I often found it difficult to make new friends as an adult before chronic illness set in- it seems like unless one is into the bar scene it is near impossible. It is even harder when you factor in a chronic illness. I soon realized I was hearing from friends less and less even if I reached out first – messeges often showed read and I received no response. For myself, when I got diagnosed with fibromyalgia in 2019, I started joining online support groups to be able to interact and chat to other people who understood the struggle with chronic pain and every other symptom fibromyalgia seems to throw at us. I found a few people on the group that lived locally and we started going out for lunch or coffee. There was never any hurt feelings if we had to cancel last minute due to not feeling well. I later started fibrofighters – there are quite a few followers who I speak to daily, eventually adding them to my personal Facebook account and consider them to be some of my closest friends. I can always count on them to be there to listen to my struggles even though they are half way around the world. They get it! Strange how people who you have never met can become your main support systems.

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In April 2024, when I received my lyme diagnosis I found myself facing another bout of lost friendships. When I expressed how disappointed I was in “friends” reactions to being diagnosed with lyme disease to the doctor treating me, she looked at me and asked me one simple question , ” Do you really want/need people like that in your life?” Of course my answer was no. Even though it still stung for several weeks, she was right – I don’t need people like that in my life. These “friends” decided to voice their opinions on my treatment routes – it is fine to have an opinion ( we all have opinions), but was it necessary to launch a personal attack and name call?! NO!! You would think my decisions were impacting their lives directly – when they were not. I know their responses were due to lack of knowledge on lyme – however this did not give them the right to treat me in this manner.

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We can’t control how people react and respond, but what we can control is how we react and respond to them. Over the last week I have been listening to Mel Robbins “The Let Them Theory” audiobook. It has been an eye opener for me. I won’t be going into detail about the book itself in my blog as there is just too much information to cover. ” The Let Them Theory” has gone viral and was only published December 24, 2024! I kept seeing her book in every store I went into the last several weeks, so I decided to listen to the audiobook version.

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“If they want to leave… let them.

If they choose someone else…let them.

If they don’t support you…let them.

If they don’t invite you…let them.

Stop wasting your energy trying to change or control other people.

Let them show who they really are.

And then you can choose what you do next!”

These seven sentences resonated with me. I felt a sense of peace take over. I realized “friends” opinions and actions reflect who they are, not who I am as a person. The way I respond reflects who I am. I wish I knew about this theory months ago when these situations took place. I would have responded way differently. I think I am going to put this theory to the test. It is going to take time and commitment – but I think it will also better my mental health and over all well being.

LET THEM!

Beyond Fibromyalgia: Uncovering Lyme Disease and Its Impact on My Life

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Hey Fibrofighters…

It has been forever since I have written a blog – just shy of 7 months was my last post release. I have not forgotten about you all! For those of you who follow my Facebook page, you all know I continue to post there fairly consistently along with monitoring Fibrofighter’s private support group. I first set out to just take a few weeks break from writing and then life happened….

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In February of 2024 my fibromyalgia symptoms got severely worse. I assumed I was in a fibro flare up. The muscle pain turned into full body joint pain and the muscle pain seemed to be non existent. I rarely experienced joint pain since being diagnosed with fibromyalgia – it was usually always muscle pain. The sudden change, left me confused and scrambling to try to figure out what caused such a drastic change to take place. I knew I had confirmed osteoarthritis in my neck and lower back – I just assumed I had osteoarthritis in many other joints through out my body. The joint pain began to severely impact my ability to move. I tried every pain reliever, muscle relaxant, pain medication I was prescribed to help with my fibromyalgia pain over the years with absolutely no relief. I found myself laying in bed almost all day barely finding the motivation to even walk to the bathroom because my hips and knees were so sore. Even to weight bear made my knees want to buckle from the pain. I started having daily high fevers of 105 F , swollen lymph nodes and a sore throat as if I had strep throat. I felt like I had been run over by a bus. Although fibromyalgia can cause these symptoms it is usually not seen daily and at the severity I was experiencing. I had been on a wait list to see an infectious disease doctor to investigate more in depth.

Some fibromyalgia symptoms. There are many more symptoms to fibromyalgia.
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Fast forward to April 2024 – knowing I would be told by my doctor it was most likely fibromyalgia and it was just “part of the package”, I never really had an in depth conversation about the new symptoms or worsening symptoms. I did mention the joint pain in my shoulders and was recommended to attend physio. I declined this recommendation as I knew it was all my joints not just my shoulders. My blood work always comes back “pristine” as I am often told. Doctors always responded back stating it is “just fibromyalgia”. If you are reading this post and have fibromyalgia, you totally get the frustration that comes from this comment. The comment we all dread hearing because it makes us feel unvalidated, crazy and as if we are just exaggerating our symptoms. Doctors don’t refer to cancer as “just cancer”, why is fibromyalgia “just fibromyalgia”? Fibromyalgia in itself can be very debilitating and life changing just like cancer can be. I decided it was time to step out of my comfort zone. I reached out on Facebook- on a local group looking for a naturopathic doctor. I was at my wits end after a month and half of severe joint pain, fevers, swollen lymph nodes and a sore throat.

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The local licensed naturopathic doctor reached out to me personally on Facebook messenger and we set up a phone call. After a 45 minute phone consultation the naturopathic doctor took me as an urgent new patient. We went ahead with the 2 hour initial assessment and by the time we were done she was confident in stating she was 95% suspicious I had lyme disease ( from a tick bite) and most likely a co infection of lyme. We went ahead with the Germany lyme test – I got a call with the results stating I was positive for lyme and a co infection. The lyme test indicated an active infection which had turned chronic – this means I have had lyme disease for many years making it harder to treat and no cure. All the answers I had been searching for, for years had been answered. I had many symptoms that did not align with fibromyalgia alone. The swollen lymph nodes, sore throat and fever mystery had been solved. Lyme and bartonella are the culprits. Sadly routine blood work does not usually indicate any signs of lyme disease. This part still confuses me – lyme is a bacterial infection, but regular blood work did not indicate any bacterial infection in my body. This is because lyme is smart and can make itself undetectable and hide in tissues instead of the blood. It can even disable the immune system from producing antibodies against the bacteria in order to survive. Lyme disables the innate immune system – which is our body’s first defense against “intruders” ( bacteria or germs). Lyme also produces extremely high inflammation, but does not necessarily show on an inflammation blood test. My body inflammation was low, but lyme was causing inflammation to take place in all my joints. The way I see it ( this is just my personal opinion), lyme defies the scientific world and what doctors are taught in medical school. If lyme can outsmart even the scientific world, what is it really capable of doing to the human body? I try not to over think the possible answers to this question because it becomes overwhelming and my anxiety begins to rise.

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Lyme disease is often misdiagnosed for fibromyalgia because both conditions have many over lapping symptoms. I won’t be going into the over lap in this blog post, but I will be sure to write a blog with this information in the near future. Sooner rather than later!

I started treatment for lyme at the end of April 2024 and it has been a horrendous road thus far. It is definitely not as simple as taking antibiotics for say strep throat or a chest infection. I was not prepared for how sick I would become 2 hours after taking the first dose of antibiotics. I was bed ridden for the first two months of treatment. I thought my symptoms were bad in February and March, it got much worse. I had to learn how to manage a whole new diagnosis, how to treat, manage side effects from supplements and medications and mentally come to terms with the diagnosis in a hurry. I am coming to the end of month four of treatment and still feel lost in this new journey. Chronic lyme means the bacteria has made it into every part of my body – Every tissue, every joint, every organ and has even passed the blood brain barrier. I have many years ahead of the unknown. Our hope is to eliminate as much bacteria as we can and put the lyme into remission. The sad part is chronic lyme can never be fully eliminated. Even if I am lucky enough to get to remission, a stressor or catching even a bad flu could trigger dormant bacteria out of hiding and the infection becomes active again. I have a long road ahead, but when I got diagnosed with lyme I decided it was time to take my life back!

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My advice to you all:

  1. If you feel it is more than fibromyalgia never stop looking for answers. Never assume every symptom you experience is fibromyalgia related. Make sure to mention new or worsening symptoms to your doctor.
  2. Trust your gut instinct! I knew deep down that something was extremely wrong, but general doctors often miss the symptoms of lyme. The naturopathic doctor I reached out to is lyme literate and trained to treat lyme.

3. Advocate for yourself. If you don’t stand up for your medical needs, who will? You know your body the best. You know when something is not right.

Much love

Fibrofighter

Progressive muscle relaxation and fibromyalgia

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Progressive muscle relaxation is a technique used to help decrease muscles tension. It focuses on one part of your body at a time with a goal of relaxing that part. Believe it or not this technique focuses on slowly tensing and releasing each muscle group at a time. You might be discouraged as soon as you read tensing up your muscles, but the technique states to stop tensing before you feel pain!

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I actually read about this technique in a book I have in regards to PTSD. I decided to research more about progressive muscle relaxation and came across articles stating this technique may be used to help fibromyalgia. There are also many other benefits to using this technique – it helps reduce anxiety, stress, lowers blood pressure, helps migraines, improves sleep issues and lowers pain levels. These are just a few benefits to using progressive relaxation techniques!

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A 2022 study (small study) put progressive muscle relaxation to the test to see how people with fibromyalgia were effected. Thirty seven people with fibromyalgia were randomly selected along with a control group of people without fibromyalgia. The group with fibromyalgia took part in progressive muscle relaxation twice a week for eight weeks. The results of the study showed pain and fatigue among the fibromyalgia group significantly decreased. Perceived stress, blood pressure and pulse rate also decreased.

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Conclusion.

According to the study progressive muscle relaxation is a feasible treatment route to help improve pain, fatigue, and stress symptoms in people with fibromyalgia. Of course this is just a small study completed, I feel a wider study should be completed to verify the findings. To read the study visit here.

Here is a basic progressive relaxation sequence.

Taken from the book “The PTSD Workbook” third edition
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Taken from the book “The PTSD Workbook” third edition
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There are many other examples online if you look up progressive relaxation techniques. The above sequence is just one example. I have not personally tried this technique, but I think I will trial it for a few weeks to see how my body reacts.

For more information on progressive muscle relaxation visit the following websites.

1. https://www.healthline.com/health/progressive-muscle-relaxation#about-pmr

2. https://www.anxietycanada.com/articles/how-to-do-progressive-muscle-relaxation/

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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Fibromyalgia – You Can’t force healing/improvement to happen…

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One aspect of dealing with chronic pain that has always frustrated me is how many health care providers think that they can rush you through a program or treatment route as fast as possible and have success at the end. A chronic illness is just that – chronic. You can’t rush a patient through various sessions and advance them above their capabilities faster then they can keep up. This last week I have been enrolled in an overcoming chronic pain summit. One presenter made a key point that you can’t force healing to take place. All that we can do is to create circumstances that make it more likely! Many chronic illnesses ( including fibromyalgia) can’t be healed or cured, but we can learn how to manage our symptoms to the best of our abilities. In order to do so we must first find strategies that work for us as individuals. What works for one person may not benefit another , but make their pain worse.

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We can’t force heal a sprained ankle or broken bone. Both injuries take time to heal. If a person requires a cast for six weeks we can’t take that cast off after three and call it good. What makes health care providers think that chronic pain can be forced to be cured or improved!? Even for myself when I was first diagnosed with fibromyalgia I thought I would have myself back up and on the go within a month – was I ever wrong.

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We are often convinced that if we take part in yoga, exercise, getting a good night sleep, eating a healthy diet and adding meditation – our chronic pain will magically disappear. It is ingrained into our mind to do as the health care providers say to get our life back to how it once was. I was convinced at the beginning that if I followed what the doctors told me, the pain would stop, and the fatigue would ease. What I found was as time went on both symptoms got worse, and new symptoms appeared. Fibromyalgia is not limited to just pain and fatigue! There are over three hundred symptoms a person with fibromyalgia may experience! I felt like a false sense of hope was engraved into my brain by being told to use these strategies and I would improve. After seeing no improvements you begin to blame yourself as a human being for seeing no changes. You begin to ask yourself what you are doing wrong. You question your sanity more and more. All of which takes a toll on you mentally and physically – causing higher pain levels to result. I personally feel health care providers need to be more clear and explain that these strategies can help create circumstances that MAY improve symptoms. I often think doctors expect patients to read as a text book – meaning here is a symptom and here is the fix. Sadly sometimes illnesses defy the scientific world and it is not always that easy to treat the said symptoms or condition at hand.

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I think back to the first pain clinic I attended. I found that the pain clinic wanted to advance me between exercises too fast. Most of the stretches I could not even do or they had to be modified to a laying down version. I found at each appointment they wanted to add more and more exercises on, when I felt I hadn’t had time to allow the previous ones to benefit my body or explore them enough to even see if they would be appropriate for me. They began advancing through sessions so quickly I was beginning to have anxiety and becoming emotional because it was so rushed. I felt like the quickness of the program, set me up for automatic failure. There was such a long waiting list to be accepted into the program, that it began to feel like I was just a number and being pushed through the motions of the program so that they could discharge me and move onto the next patient. I never felt like the multidisciplinary team that was involved in my care while I was in this program even cared about my well being – just going through the motions to get me in and out of the program as fast as possible.

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The same experience was noted at the second pain clinic I attended. Even though the main focus of the program was to help improve my quality of life, I was only given a max of eight sessions before being discharged from the program. I again felt I had not benefited from the program due to the fact it was such limited guidance. People with chronic conditions can’t even begin to possibly unravel and decode what they need in such a limited time frame – especially when the symptoms/condition change by the minute or hour. I was never really even given any useful strategies that could help lower pain levels.

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Trying to get a grasp on chronic pain takes commitment and dedication. There is no such thing as a one size fits all when it comes to health and well being. Different strategies work for different people at different times in their lives. Often times we must step out of our comfort zones to find strategies that work.

My advice to others struggling:

1. Never give up. Even if strategies do not work at first. Slow but steady wins the race. Keep trying new strategies. Go back and try old strategies later on.

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2. You can’t rush through chronic pain strategies and expect success. Slow down. Listen to your body.

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3. It takes dedication and commitment. You can’t try a strategy for a week or two. It takes time to see results. Many people get discouraged when results are not immediate. For example, athletes must become dedicated to train to win the final race. They have to keep at it to see results.

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4. Be open to all strategies even if they sound strange. We sometimes have to step out of our confront zone to find successful strategies. I used to roll my eyes at the thought of meditation helping lower pain levels and helping me sleep. After a month of meditating right before bed, I have noticed a decline in pain levels at night and sleep better. In the past meditation always failed – or did it? I think it was more me sabotaging the success from thinking it wouldn’t work. I am also learning the way we think and react to situations affect pain levels.

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5. If you are finding health care providers are rushing through the motions to help improve chronic pain speak up ( the sooner the better). I felt I waited too long and then when I spoke up I got labelled as difficult. My doctor who diagnosed me also had to tell other providers to slow down and listen to what I have to say.

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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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Nociplastic Pain and Fibromyalgia. What exactly is Nociplastic Pain?

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When we stop and think of pain many of us think pain is just pain. I have recently bought two books on how to “live” with chronic pain and to make the best life possible. Both these books introduced a concept that I was not aware of. I am sure the terms have existed for years in the medical field, but since I have been dealing with chronic pain I have not had a doctor explain it using these terms.

Did you know there are actually three types of pain?

1. Nociceptive pain which occurs if there is an injury such as a broken bone, appendicitis etc.

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2. Neuropathic pain occurs when there is an injury or condition to the nerve system. A spinal cord injury or multiple sclerosis are a few examples.

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3. Nociplastic pain takes place when the pain system has become sensitized. Nociplastic is the pain felt in fibromyalgia.

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You can compare the three types of pain like an alarm system. Nociceptive pain takes place when the alarm system is working properly. In neuropathic pain, the wires of the alarm system are damaged and in nociplastic pain the alarm system has a total malfunction.

When acute pain becomes chronic – changes within the pain system takes place. These changes lead to central sensitization. In central sensitization the spinal cord becomes more sensitive to pain. Our pain system has now altered and become dysfunctional. How do doctors make comments such as “fibromyalgia is just a mental illness” is beyond me when there is proof that the nervous system is affected.

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Living in chronic pain will eventually change the synapses ( nerve impulses passing from one neuron to another) in the brain. These synapses become so strong that we feel chronic pain without something triggering pain or without us even being conscious about the pain. According to experts we must reconstruct these synapses in order for the chronic pain to ease or change patterns. Fibromyalgia often leaves areas feeling sore and painful when there is actually no “injury” to treat. For example, I often have upper back pain. It seems to be a very problematic area since my fibromyalgia diagnosis. I can apply heat, ice and take as many pain killers as possible, but my brain still alerts me with chronic pain to that area. It is impossible to fix the area of pain because the problem does not reside in the body part anymore. Make sense?

Think of it this way, we learn to bike or even drive a vehicle. It takes practice. The more we practice the stronger those synapses in the brain become, Eventually it becomes second nature to get on a bike or drive to the store. Same concept happens with chronic pain.

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I have not made it far into the book to explain how to deconstruct these synapses to help alleviate chronic pain. Is this where the idea of slowly working our way up to longer increments of time helps reconstruct these synapses?! I am hoping as I make it through the book, it explains how to do this. Many resources explain what needs to be done, but not how to carry out any strategies to make the changes happen! I will be sure to share in a later blog, what I have learned.

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According to experts many doctors do not know how to diagnose or treat nociplastic pain. Nociplastic pain is a fairly new concept. When I conducted research to write this blog it was documented that nociplastic pain was only really mentioned and introduced in 2016! That is not very long ago. Many doctors often recommend opioids to their patients to treat chronic pain. However, it is noted that opioids are ineffective in treating nociplastic pain or could eventually lead to worsening of pain. Opioids are also known for making central sensitization worse over time.

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No matter what the treatment route is this process will not happen over night. It takes commitment and dedication. A person cannot expect to take part in a week or two program and expect it to resolve. Long lasting pain improvement requires a long term plan which has to be followed to show improvement.

For more information on nociplastic pain and fibromyalgia visit the following websites:

  1. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9561334/
  2. https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(21)00392-5/fulltext
  3. https://arthritis.ca/living-well/2022/fibromyalgia-new-science-shows-the-pain-is-real

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!

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.

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.

Can fibromyalgia go into remission?

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Living with fibromyalgia can be like being on a rollercoaster. You never know what to expect day to day or even hour to hour. One minute you can be on that incline to the top of the rollercoaster, the next you are declining to the bottom. We are told fibromyalgia has no cure, but can a person with fibromyalgia go into remission? Believe it or not – the answer is YES!

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The chances of going into remission are better if you have been suffering with fibromyalgia two years or less – with only mild symptoms. Sadly for most of us, our fibromyalgia symptoms are not mild. Experts state that if you have mild symptoms and can learn to control these symptoms, you have up to an 80% of going into remission with fibromyalgia. With fibromyalgia there can be short and long term improvements. When a person is able to find success in long term improvements, this phase is considered remission. For myself, my fibromyalgia symptoms are classified as moderate to severe – the chances for remission is extremely low.

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There are many aspects to consider when trying to lower fibromyalgia symptoms. Your entire life is flipped upside down, and affects every aspect of your life. It can become overwhelming to try to “control” symptoms – as many of us find the symptoms control us. How can we try to put fibromyalgia into remission? Fibromyalgia does not improve without hard work and dedication. We must fight through every step.

Here are a few important areas that I feel should be addressed. Again, please remember the below are based from my personal experience living with fibromyalgia. The areas in which you work towards will most likely look differently then mine.

1. Work towards improving sleep

In all the research I have done over the years and attending fibro summits online by doctors who treat patients with fibromyalgia , trying to improve sleep quality is important. I know, easier said then done. I myself struggle with sleep issues and each year it seems to get worse. I often wonder if I could get the adequate amount of sleep needed if I would experience less fibromyalgia symptoms. Dr Liptan, who is the author of “The Fibro Manual”, states in her book that sleep is the first thing that needs to improve before any other treatment will even begin to work.

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2. Mind and body practices.

At the beginning of my fibromyalgia journey, I would just roll my eyes at suggestions about improving mindfulness skills. After so many failed treatment plans, I have stepped out of my comfort zone and started to focus on mindfulness practices. The previous attempts at mindfulness practices always failed me in the past – or did they? I think having the wrong guidance by health care providers was the issue. I am currently in the care of a psychologist who is helping guide me in mindfulness strategies. The difference this round – the psychologist I see is trained to focus on chronic pain, while the others were not trained on chronic pain strategies. It sure makes a difference when you attend sessions and are not judged. In the past I was heavily judged for failed attempts and told I was not trying hard enough to improve my condition. With those judgements eliminated, mindfulness practices are making a positive change.

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3. Lifestyle changes are necessary.

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Many lifestyle changes need to take place when diagnosed with fibromyalgia. Obviously if one sits back and does nothing fibromyalgia can get worse. Learning to slow down and pace is one strategy that one must acquire. You may not be able to get everything done like before, but setting priorities will help you learn to pace. If you haven’t already you can read about pacing on my previous blog.

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Dietary changes may benefit. There is not a specific dietary plan for fibromyalgia, but there are many foods out there that can cause symptoms to flare. I bought Dr. Liptan’s book ” The Fibro Food Formula”. Liptan explains how certain foods seem to make pain and symptoms worse. We are often told to avoid eating foods with aspartame, MSG, sugar etc. – basically your unhealthy foods. Alcohol is also listed to avoid or limit. For myself, I often find alcohol triggers my pain to go out of control. Sadly watching your diet is hard to do at times when fibromyalgia is attacking full force. When I am in a flare up, I tend to eat whatever is easy to make – usually full of ingredients that won’t benefit me further down the road. I package of mac and cheese is quick and easy to make – but not the healthiest choice.

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For some people just adding in a bit of exercise helps their symptoms. For myself, exercise just brings on a huge flare up. I choose not to focus my treatment options around exercise as much anymore. I go for walks when I can. Exercise for fibromyalgia must be gentle. Walking, yoga, tai chi, etc. all are considered exercise.

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Medications and supplements. I am not going to go into a huge discussion about either products. Some people benefit from medications prescribed for fibromyalgia while others find it creates too many side effects or have absolutely no change in their condition. One medication might work for one person and make life even more miserable to another. I was lucky to find a medication that has lowered my pain levels enough to at least get out it of bed and get a few tasks done throughout the day. I know many others who found the same medication I am on useless.

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There are many aspects to consider. The above are just a few to mention. Everyone has to find the right combination for themselves. You can’t simply be on the same treatment route of someone else with fibromyalgia as it is very much individualized. Whatever routes you take, I hope you find the balanced combination to allow relief of symptoms and/or possibly allow you to experience fibromyalgia remission! Never say never, because I have seen a few people succeed. I often wonder if I had the right guidance early on, if I could have gotten my fibromyalgia under control. My symptoms were mild at the beginning, but due to covid restrictions taking place I was unable to access the early interventions at all.

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.

Chronic pain appears to change the brain. Does it cause damage? According to research, chronic pain can possibly can damage our brain

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According to experts, fibromyalgia has a neurological component. In fibromyalgia the brain interprets all stimulus as pain – when it really isn’t painful. In return our brain misfires pain signals all over the body causing chronic pain to form. Have you ever stopped to think about what happens to our brain if it is constantly at work sending pain signals out? You may be surprised.

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In a healthy brain, all the regions exist in a state of equilibrium. When one brain region is active, the other regions should not be as active. However, chronic pain causes the front region of the brain ( responsible for emotion) to never deactivate. It is always in “full throttle” – meaning it is always fully active. The constant activation can wear out neurons ( information messengers) alternating connections to each other. Researchers used MRI scans to scan the brain a group of people with lower chronic back pain and a pain free group (control group). What they found was that parts of the cortex were activated in the pain free group and others were deactivated ( maintaining the equilibrium). Your brain cortex is responsible for memory, thinking, learning, reasoning, problem-solving, emotions, consciousness and functions related to your senses. However, in the chronic pain group, one of the nodes did not quiet down. Researchers state that then constant firing of neutrons could cause permanent damage. The connections could die because they can’t sustain high activity for this long without a break. People with chronic pain have pain 24/7 – which makes areas of the brain always active. This could hurt the brain. You can read the article here.

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In another study in 2007, researchers discovered that people with fibromyalgia, grey matter of the brain is lost. We lose grey matter as we age, but it appears that fibromyalgia may speed up this process. The study revealed that fibromyalgia patients showed a reduction in grey matter and total brain volume compared to the healthy control group. The grey matter that was lost occurred mainly in the regions of the brain related to stress and pain processing. In areas of the brain, the parahippocampal and frontal cortices, the grey matter lost is consistent with cognitive deficits of fibromyalgia ( cognitive impairments seen in fibro). Grey matter atrophy is partially reversible. Grey matter irregularities caused by chronic pain do not reflect brain damage. It will normalize when the pain is treated or under control. You can read this study here.

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Both these articles sure made me think and evaluate the neurological aspect of fibromyalgia. Are the changes in the brain that were discovered in these two studies, the reason behind some fibromyalgia symptoms or even a cause to why fibromyalgia may develop? I do not have the answer, as I am not a scientist. I believe a wider study is needed to verify the above findings. These are only two smaller studies completed.

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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 – I wish doctors and other health care providers could live in our shoes for a month! Would they be able to take part in their own recommendations?

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There are times I wish every health care provider we deal with could actually put themselves in our shoes for a month to see how it truly feels to live with chronic pain on a daily basis. I bet if they were faced with the chronic pain and other symptoms that they too would have a difficult time finding the energy to take part in all the recommendations to decrease pain levels. When health care providers recommend these routes, do they stop to understand the whole picture? Or are they just recommending these routes because according to science it works? Most times I now take many of the recommendations as a “grain of salt.” If you haven’t heard of the saying ” take it with a grain of salt” it simply means to not completely believe something that you are being told. During early diagnosis, I believed what I was being told could fix fibromyalgia. I soon learned that this was not the case and my body does not respond well to many of the recommendations.

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There have been many recommendations made to me that I should attend physiotherapy, massage therapists, and just learn to exercise more. I know health care providers mean well by recommending these treatments, but I know they don’t exactly understand how painful it can be for us who live daily with fibromyalgia. Adding chronic fatigue on top of the pain makes it very difficulty to find the courage to take part.

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I recently started physiotherapy for osteoarthritis in my lower back. After assessment I felt it might actually be a great decision. However, after my third appointment, I found myself in a full blown flare up. After almost a week of increased pain levels and major fatigue I am second guessing myself. A treatment that was supposed to help relieve my lower back and hip pain has turned into widespread jumping pain down to the bone. Most times we are told to push through and it will get easier- in most cases it doesn’t get easier and we are left bed ridden.

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I had the same experience when I attended a pain clinic and was working along side a kinesiologist. The basic stretches they gave me would send me into a complete spiral and I would go into a flare for days. After months of trying to slowly work stretches in without causing a flare up, I gave up. For myself the extra pain the stretches were causing was just too much to handle on top of my everyday pain I was dealing with.

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Massage therapy is often recommended to help relieve fibromyalgia. I am sure there are many out there that find it helpful, but I do not think it is the right route for me to take. I have never attended a massage therapist, but even the slightest pressure to my muscles hurt me. I could not even imagine someone trying to manipulate my muscles to make them feel less painful. Even a muscle roller where I can control the pressure causes extreme pain to form.

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Exercise! Don’t get me wrong, exercise is important, but it just isn’t as easy as it sounds when you factor in fibromyalgia. Is anyone else absolutely tired of being told to exercise more and fibromyalgia will get better? I was always told to get a gym membership and go to the gym, but reality is the gym is just too much for me to handle. They want me to use the treadmill to walk, but what they don’t understand is I can’t even walk fast enough on the warm up setting. A stationary bike was also recommended, but my legs burn so bad after 15 seconds of peddling and my knees begin to ache. When I step off the bike I feel like collapsing. I won’t push through because I will just end up in a flare.

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I often wonder why certain routes work with some people and not others. Does it come down to how severe your fibromyalgia is? I know fibromyalgia isn’t exactly classified as mild, moderate or severe, but some of my symptoms over the years have gotten worse. I can guarantee it isn’t because I don’t exercise and move. My doctor always said some people recover fully from fibromyalgia with adding some exercise and lifestyle changes , some improve and then hit a plateau and remain there, while others get worse. After speaking to many people on numerous fibromyalgia support groups world wide, I now realize how true his statement was. He believed I hit that plateau. We exhausted all routes we could possibly explore – it has now been quality of life based treatments.

Fibromyalgia and osteoarthritis (OA) – Is there a comorbidity between the two conditions?

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Three and a half years ago I never thought I would be being diagnosed with fibromyalgia. Now here in 2023 I find myself being diagnosed with osteoarthritis. Both fibromyalgia and osteoarthritis are chronic pain conditions. Fibromyalgia in itself is debilitating enough. Experts share that fibromyalgia often co occurs with some form of arthritis. In a study 88.7% of participants reported chronic joint pain/degenerative arthritis along side their fibromyalgia. Read more here about the study!

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I found out last spring that I have osteoarthritis in my neck. My neurologist had ordered a cervical neck MRI which revealed arthritis. I always thought the neck pain I was experiencing was all fibromyalgia pain. When I found out I have osteoarthritis in my lower back as well, it came as no surprise. If osteoarthritis is found in one area of the body, it is most likely in other areas of the body too! My doctor suspects I may have OA in my finger joints and knees as well. Osteoarthritis has no cure. The belief is that OA often gets worse over time- but not in all cases. Experts say lifestyle measures such as exercising, maintaining a healthy diet/ weight, or attending physiotherapy sessions can help relieve pain and possibly slow progression. However, when you factor in fibromyalgia it complicates osteoarthritis greatly.

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Fibromyalgia and osteoarthritis are two separate conditions. the coexistence of both together can make the symptoms of each condition worse! Both conditions have overlapping symptoms such as stiffness, pain and limited range of motion.

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Fibromyalgia causes the brain to misread pain signals. In my case, my fibromyalgia makes my osteoarthritis pain feel worse then what it actually is. Technically my OA is considered mild, but I’ve had several doctors tell me that I am most likely feeling the pain at moderate to severe pain levels. For example, the arthritis is my neck causes severe pain to form leaving me unable to turn my head or even lift my arms. The pain radiates into my shoulders and upper back limiting my range of motion in all areas. Fibromyalgia tender points are often seen in the neck and upper back as well. Adding the pain from both conditions can become very debilitating.

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Fibromyalgia and OA both report sleep disturbances. Fibromyalgia rarely left my lower back and hips with pain. When the pain got unbearable I knew something was not right. The lower back and hip pain would continuously wake me up through the night. It was impossible to find a sleep position that wouldn’t exacerbate the pain. I already suffer with insomnia from fibromyalgia,` then the OA pain made sleeping even harder. Research states 70% of people with OA have a sleep disturbance. Cortisol ( hormone that helps control inflammation) levels in your body also drop through the day and are the lowest at night. When cortisol levels are low more inflammation takes place causing pain and discomfort to result. Read more about how osteoarthritis impacts our sleep here.

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Mental health issues can also be seen in people with fibromyalgia and any form of arthritis. Anxiety and depression are two examples of mental health issues that can form. No matter what mental health condition you are faced with, it adds extra stress to your body causing more pain or higher pain levels to be felt. It is know that mental health conditions can lower one’s pain threshold even lower. In return, the chronic pain being felt will cause higher levels and anxiety to form even more. It becomes a vicious circle! Learn more about how arthritis can impact your mental health here.

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How to limit pain levels in both fibromyalgia and osteoarthritis

1. Massages are often recommended for both conditions. Massages may help relax tense muscles which will reduce pain. In osteoarthritis, massage can help reduce swelling, improve joint mobility, and provide stress relief! If you can handle hands on treatment routes you may find this helpful!

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2. Drink plenty of water. Dehydration can cause muscle cramps. Fibromyalgic muscles are tense. Adding dehydration on top can exacerbate the pain. Water helps the muscle flush out toxins that need to be removed. Same goes with osteoarthritis – water helps flush out body toxins and can help fight inflammation and hydrated cartilage helps reduce friction between bones ( move easier) .

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3. Swimming or walking in water. Swimming has been proven to help both conditions. Water exercises are easier on your joints and muscles then dry land exercise. Swimming will also help stimulate blood circulation and can help reduce muscle stiffness and ease pain levels. Experts state that the water provides resistance that helps boost your strength and over all range of motion!

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4. Walking. Walking has been proven to help both fibromyalgia and osteoarthritis. With both conditions, we need to continue to stay active to prevent muscle/joint stiffness or loss. Even if you can only handle walking for one minute, it will help. Slowly build yourself up in walking time. My max walking time most days is 15-20 minutes at a time. I pushed myself on a walk yesterday and I almost had to send someone home for a vehicle. Walk within your limits! Walking is considered a low impact exercise, which is recommended for both fibromyalgia and osteoarthritis!

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5. Heat. For many of us applying heat to our aching bodies help relieve fibromyalgia pain. Osteoarthritis pain can also be relieved with heat. Heat can be very effective to help relieve stiffness of the joints from inactivity!

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I am sure there are more strategies out there to help combat fibromyalgia and osteoarthritis. I am currently working along side a physiotherapist to help gain some strength and mobility back. I am also seeing a psychologist who is helping me find routes to help lesson my pain levels. I have only just started my journey with both these health care providers, but I have a feeling both treatment routes will be very beneficial!

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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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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Invisible Documentary on Fibromyalgia – What do the doctors say in their interviews? What I found interesting.

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I recently watched the newly released documentary on fibromyalgia – “Invisible.” produced by Nick Demos. The interviews with the individuals living with fibromyalgia did not surprise me – being I live with fibromyalgia myself and completely understand their struggles. What it did show me was that people all over the world with fibromyalgia do struggle with many of the same hardships. What I found interesting was the information presented by the doctors and wellness coach in their interviews.

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Dr. Liptan was interviewed in this documentary. She got diagnosed with fibromyalgia during medical school, has treated patients with fibromyalgia and now focuses her attention to research on fibromyalgia. She stated she feels we are 50 years behind in regards to fibromyalgia knowledge and treatments. Yes, you read that right, 50 years!!! In fact, she presented a time line of fibromyalgia. Did you know there was a 35 year gap on research or discovering anything new in regards to fibromyalgia!? We all know that there is lack of research, but I never thought there would be such an enormous gap between discoveries on a condition that is being diagnosed more and more. The first FDA approved medication to treat fibromyalgia was not even released until 2007! Reality is that wasn’t very long ago seeing as fibromyalgia was being diagnosed way before 2007! Liptan explains that she feels that fibromyalgia should be considered a disease, not a syndrome. She believes this because there is proof that there is consistent changes in the brain and body.

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Timeline of Fibromyalgia- Not the exact one presented in the documentary.
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Dr. Liptan also shared her thoughts about insurance companies and how they only pay for certain medical routes. Most support people with fibromyalgia need, is not covered by insurance companies – vitamins, maintenance appointments such as acupuncture, massage, myofascial release, ect. Dr. Liptan states insurance companies will pay for MRIs and expensive medications, but all she wants in some cases is to see insurance pay for a gym membership. It does make sense. I was told from day one I should utilize the gym, but I can’t afford to pay for a membership. Same goes with swimming – all the doctors I saw recommended swimming as a treatment option for fibromyalgia as it is a low impact exercise. However, who can afford a membership? Even a monthly membership to the pool can get costly not to mention the money spent on gas to travel to and from the rec center. In my case, the pool is on the completely opposite side of the city then I live.

Dr. Liptan – Author of the Fibro Manual
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Tammy Stackelhouse, who is a fibromyalgia coach and also has fibromyalgia herself was also shown being interviewed by Nick Demos in Invisible. Demos and Stackelhouse converse about how many people can’t afford the holistic treatments that insurance either has a cap on how much they will cover yearly or simply do not cover these treatment options at all. Nick asks what happens then!? I know many people who can’t afford treatments being recommended to them such as yoga, massage therapy, acupuncture..the list goes on – especially with cost of living continuing to increase! I know there are many yoga, tai chi, ect. self directed videos online, but when you factor in chronic pain, it is not as simple as taking part in these follow along videos. There are a lot of other aspects to consider when dealing with chronic pain – which many of us need the guidance with, but don’t receive. Stackelhouse’s response is very realistic and hit me hard emotionally. She states, ” There is not a-lot of hope!” People in these difficult situations – of not being able to get treatment because they can’t afford these routes – “are probably not living really.” In my own struggle with fibromyalgia I often told my doctor I felt I was only existing and not living anymore. When we wake up with chronic pain – pain that hits levels of 10 that lasts all day long and go to bed in pain it makes life unbearable! No one wants to live life trying to “survive” instead of enjoying life, but for many of us living with fibromyalgia that is reality.

Tammy Stackelhouse – Fibromyalgia wellness coach
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Stackelhouse explains there is a hopelessness in the fibromyalgia community. How true this statement is. I think all of us who live with fibromyalgia feel hopeless at some point during our journey! How can we not!? We get diagnosed with fibromyalgia which currently has no cure and then we are often left on our own without guidance to figure out how to limit our chronic pain. We are left to adjust to life with fibromyalgia. Many of us may even feel like we have “lost our identity” – of who we are. Through our journey we encounter doctors who believe fibromyalgia is not real and we are often told to get used to it as this is now your life. I recently had two back to back experiences with doctors who I believe do not believe fibromyalgia is a big deal. I got dismissed stating I was not sick and got told my anxiety was the cause of why I was not feeling well. These doctor visits were not even fibromyalgia related.

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Demos also gets diagnosed with fibromyalgia while filming the documentary. He visits Dr. Melissa Congdon ( who has fibromyalgia herself and treats many patients with fibromyalgia) who conducts a physical exam to look for a specific pattern of muscle spasms or swellings. I found this interesting information so I decided to do some research on Dr. Congdon. On her website she refers to Dr. St. Amand – who has examined over 10 000 patients with fibromyalgia. He noted in every exam – every patient had muscle spasms and swollen places ( he calls these nodules) scattered pattern like though out the body! 100% of the patients examined had nodules in their left anterior thigh. He believes if someone has nodules in their left anterior thigh they have fibromyalgia. I had never even heard of this theory. Why isn’t this way of diagnosing fibromyalgia used by doctors and specialists!? Is there not enough proof ? Or are doctors, specialists and health care providers just not aware of the information!? I don’t have the answer to this. Again, food for thought!

Dr. Congdon and Dr. St. Amand

I would recommend watching the documentary Invisible! It was put together well and very informative! You can rent it on Vimeo.

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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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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 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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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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