Tag Archives: chronic fatigue

SIBO – What is it? Is there a correlation between SIBO and Fibromyalgia?

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Have you ever heard of SIBO? Most people will say no to this question. I hadn’t heard of SIBO until I started seeing a naturopathic doctor. SIBO stands for small intestinal bacteria overgrowth – it is not the same as IBS or c diff.

I started seeing a naturopathic doctor (ND) in April of 2024 to treat chronic Lyme disease. Before we had even tested for Lyme, the ND was positive I was dealing with SIBO. She immediately put me on a herbal treatment for it and it was gone in three weeks. It is said that 70% of people who have lyme disease often get SIBO. This is my third time being treated for SIBO and it has been the worst case I have had thus far.

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What is SIBO?

SIBO is a condition where there is an abnormal increase of bacteria in the small intestine.

Symptoms of SIBO:

You can find more information about SIBO at the Mayo Clinic here.

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How is SIBO diagnosed?

  1. Symptoms. If medical providers know the warning signs of SIBO, a conversation with your provider may lead to a SIBO diagnosis. In my case the ND I see treats SIBO often and she knew what was wrong before we even sat down to discuss details.
  2. There is a breath test that can be done to determine how much hydrogen or methane one breathes out after drinking a mixture of glucose and water. I do not think this test can be ordered in a regular medical lab ( maybe in some areas of the world) . I do know many naturopathic doctors offer the testing, but it can be fairly pricey.
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SIBO and Fibromyalgia

Out of curiosity I began googling fibromyalgia and SIBO – and found many studies indicating there is a correlation between the two conditions. Over the years, I have read that gut health needs to be corrected if one has fibromyalgia, but never understood the connection. I continue to do reading on how the gut biome can affect many health conditions to try to understand. Experts state the gut is connected to many parts of the body – including the brain.

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In one study, 815 people were tested for SIBO using the breath test. 123 people in the study were known to have fibromyalgia. Out of the 123 people tested for SIBO, 96 tested positive. That is 78%. The study concluded that small intestinal bacteria over growth is associated with a fibromyalgia and when treated for SIBO intestinal symptoms improved. You can read about the study here.

Another study conducted in 2004, concluded that 100% of the participants with fibromyalgia had SIBO. This study can be found here

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Even though these are both older studies the findings/results were consistent. I found a few other studies regarding SIBO and fibromyalgia, but due to very little information on the studies themselves, I chose not to include the links in my blog. I think this is due to the fact that the studies are older so only giving you the quick run down of the studies. It would be interesting to see some current studies on the subject conducted to see if the findings are still similar.

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After beginning treatment for SIBO through herbal routes, I mentioned to a few medical doctors that I was being treated for SIBO. To my surprise, their response was, “What is that?” Medical doctors do not seem to even know what SIBO is – yet alone how to diagnose it or treat it. SIBO can be treated with antibiotics, but in my case heavy antibiotic use for seven months for lyme treatment was the culprit to why I developed SIBO in the first place. I was on several probiotics while on antibiotics to help counter act the gut biome from being destroyed – sadly in my case it didn’t seem to be enough and the SIBO bacteria got away on me.

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After 4 weeks on various herbal supplements provided by the naturopathic doctor, I began to see improvements. The stomach bloating began to settle down, along with severe cramping, loss of appetite and severe diarrhea. Week 6 – has been fairly up and down with SIBO symptoms yet again. I am attributing the increase of symptoms due to having to switch to another supplement that may not have been strong enough to keep eliminating the bacteria.

I often wonder how I would have gotten the proper medical treatment without the naturopathic doctor being able to recognize the warning signs of SIBO – being medical doctors don’t seem to know what it is. I know I have several months left of treatment, but at least it is slowly getting better.

Next time you may be having major gut issues, consider SIBO as a possibility. You may have to advocate for yourself as many health care providers may not know what SIBO is.

Here is a good ebook i found online about SIBO symptoms. I thought I would include it for those interested in reading more information.

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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

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.

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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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!

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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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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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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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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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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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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