Monthly Archives: December 2022

What fibromyalgia pain may feel like. Real life examples…

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We all know that fibromyalgia is an invisible condition. I decided to explain what fibromyalgia would look like and feel like to people without fibromyalgia.

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I am including a sensitivity warning on this post as I have visually described what some fibromyalgia pain can feel like! If reading such imagery, I suggest you not read this post.

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1. Have you ever had a huge bruise somewhere on your body that hurts when you barely touch it?! The type of bruise that turns dark purple/ blue and stays for over a week?!! Image your entire body covered head to toe in bruises. Pretty painful thinking about it. I often tell people my body feels so bruised up. The below picture is a image that represents fibromyalgia pain well. This image often circulates on fibromyalgia groups with a description stating, “If fibromyalgia were visible!”

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2. Ever dropped a glass item and watched it shatter such as a drinking glass? I know I have and picking up the glass, results in possibilities of getting glass splinters in your fingers or accidentally stepping on a piece. Now image the spot where the shard entered getting infected and the area starts to throb. Try to image that feeling in every muscle you have – there are over 600 muscles in your body.

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3. Have you ever been on an acreage or farm that has barbed wire fences installed?!? The barbs on the fence are very sharp. I know I’ve cut my finger on these fences and snagged my clothing. Now image a piece of barbed wire wrapped around your legs and arms. The bards dig in and feel uncomfortable and possibly cut your skin. Now imagine someone pulling that piece of barbed wire tighter. What an unpleasant thought, yet alone feeling! Welcome to what fibromyalgia pain can be compared to.

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4. We have all received a static shock at some point in our lives unintentionally. Clothing creates shocks during the winter months. Imagine feeling like you are being shocked all day with no break. Everything you touch shocks you. Every step generates a shock. The feeling can become annoying or uncomfortable. Imagine putting on fuzzy socks and dragging your feet across the rug. It creates lots of shocks back to back. Now image these shocks in your brain or in every muscle in your body at once. Ouch!!

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5. Ahh! Sunshine!! Image you are Enjoying a beautiful day at the beach, not a worry in sight… until the next day when you realize you forgot to apply the sunscreen. Your skin is screaming back at you as you try to soothe the redness. Your sunburnt area is so sore even applying aloe makes you want to cry or the touch of your shirt lightly resting on your skin is unbearable. People with fibromyalgia can experience sensations like their skin has been burnt, with no relief. The touch of wearing clothing is enough to make us want to scream. People with fibromyalgia often get rashes on their body that can burn. I have experienced a few of these attacks.

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6. Image sitting around a relaxing campfire on a beautiful summer evening. You throw a piece of wood on the fire that begins to spit hot coals from the fire and sparks. Have you ever had a spark land on your skin and it hurts?! People with fibromyalgia can also experience these sensations without the visible sparks. It isn’t just one spark, its continuous spark pain for hours on end – even days..

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7. Imagine you just got off a long shift at work. You are exhausted and feel like you have been through the wringer! Now force yourself to stay awake. The fatigue a person with fibromyalgia feels everyday is equivalent to someone without fibromyalgia not sleeping at all for three days! Can you function if you were to stay awake for three days straight? Not even a 5 minute cat nap? I bet the answer is no.

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Fibromyalgia might be invisible, but there are many ways to visualize and represent what fibromyalgia pain can feel like. These are only six that I have written about. There are many more examples that come to mind.

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What happens if you start your day with selfcare….

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

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

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

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

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

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

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

My thoughts:

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

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

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

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

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Hacks to get through winter the winter with fibromyalgia…

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

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

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

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

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

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

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

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

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Food for thought…

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

Question:

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

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

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

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

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

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

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

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

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

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

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

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What can cause a fibromyalgia flare up…

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

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

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

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

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

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

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

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

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

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

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

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Warning signs your trapezius muscles may be causing you pain…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Myths about fibromyalgia and what makes these assumptions a myth ….

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Today, there can still be many misconceptions about fibromyalgia. I often feel these misconceptions are formed because there is such a negative stigma in regard to fibromyalgia. Fibromyalgia is being acknowledged more as time passes, but it can still be misunderstood by many. More people are getting diagnosed with fibromyalgia syndrome and at present it is considered a disability (at least in some areas in the world). I personally think it should be considered a disability world-wide – being that it is such a debilitating condition.

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Myths include:

1. Fibromyalgia is all in your head and not real. Fibromyalgia is NOT a mental illness. Fibromyalgia pain and symptoms are not just being imagined and made up by the person experiencing it. The pain is real, or so many people wouldn’t have the same experiences. Technically it is in our heads, but not in the way people are referring to.

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2. Fibromyalgia only affects women. Fibromyalgia is more prevalent in women, but men can also be diagnosed with fibromyalgia. It does not just affect women.

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3. There are medications or prescriptions that can make fibromyalgia heal and you will be cured. Currently there is no cure for fibromyalgia. Medications are used to help relief pain and symptoms but does not cure fibromyalgia. One must adjust and learn to manage their fibromyalgia.

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4. Fibromyalgia is caused by arthritis or is an autoimmune disease. Fibromyalgia is actually considered a neurological condition (at this point). In fibromyalgia the brain reads signals incorrectly, resulting in the body misfiring pain signals. A person with fibromyalgia may receive a hug, but the brain perceives this sensation as pain. I have read articles as of recent stating it may be an auto immune disorder. If it is eventually considered an autoimmune disorder, maybe rheumatologists will begin to treat fibromyalgia directly. The rheumatologist I saw stated they don’t treat fibromyalgia and it is best overlooked by a family physician. A rheumatologist is often involved to rule out any rheumatoid conditions that may mimic fibromyalgia. There may be the odd situation where a rheumatologist stay involved depending on circumstances.

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5. People diagnosed with fibromyalgia should eat a special diet. There is actually no specific diet. Eating certain foods can create inflammation to arise in one’s body. Doctors or dieticians may direct you to try eliminating certain foods. However, there are a few diets out there believed to reduce fibromyalgia symptoms, but as far as I know these are just trials to see if they help. Some people might find going gluten free lowers their fibromyalgia symptoms, while someone else may not see a change.

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6. Pain felt in fibromyalgia is minimal. Pain felt is actually very painful. I often compare it to pain that people with bone cancer may feel as my bones in my body actually ache. On the McGill pain index, fibromyalgia pain is just below unprepared childbirth and almost on the same pain level as prepared childbirth. I’m not sure if this pain index is still used today, but it gives one an understanding on how painful fibromyalgia can be. In a 2020 research study, it revealed that the intramuscular pressure found in muscles of people with fibromyalgia is found to be three times higher than people without fibromyalgia. That is a-lot of pressure on our muscles! No wonder our muscles hurt and ache the way they do!

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7. Avoid exercise. While exercise may increase the pain levels, it is still important to move and incorporate some exercise into your day. Obviously, I don’t mean run a marathon, but some movement would benefit. If one doesn’t move the more it hurts when you do need to move. Cleaning, cooking, laundry and walking around the house are all considered exercise in my eyes. You are still using your muscles. If you do not move around your pain threshold may become even lower causing you more issues down the road.

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8. One must have 11/18 tender points to be diagnosed with fibromyalgia. Maybe years ago, this was the case. Today, doctors may not even ask about tender points. They look at other aspects too such as history and symptoms. Tender points can give a good indication if fibromyalgia is present. Often patients are still asked to fill out the tender point form. A study revealed that 20% of those included in the study reported not having any tender points.

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9. Fibromyalgia only affects older people. Fibromyalgia can form at any age. I know some get diagnosed early during childhood or in their teenage years.

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10. Having fibromyalgia makes you a hypochondriac. Did you know fibromyalgia can have over 150 symptoms? Most likely all the symptoms one speaks about they truly do experience them – proving it doesn’t make a person a hypochondriac. I know my symptom list grows by the day! Each symptom needs to be treated.

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11. Fibromyalgia is a “catchall” diagnosis. There are specific criterias that must be met to get a diagnosis of fibromyalgia. People don’t get diagnosed because doctors can’t figure out what is wrong with them. If one does not meet enough of these criterias, one is not diagnosed with fibromyalgia.

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Fibromyalgia Research 2021 – Study concludes that fibromyalgia may be an Autoimmune Disease

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Have you ever stopped and actually thought about treatment options for fibromyalgia? There is no specific treatment route to treat fibromyalgia. It is often a trial-and-error process to see what works for each person. I often wonder why there is no specific treatment for fibromyalgia. You would think in this day and age there would be a solid treatment. It makes me wonder if there are missing pieces and connections in research and discoveries preventing this from happening.

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I watched a video which featured Ginevra Liptan , a doctor in the United States. Liptan founded The Frida Center for Fibromyalgia. She shares that there is very little research being done on fibromyalgia due to lack of funding. She is also an author of The Fibro manual. If you haven’t already, I recommend reading this book. It has become a great source of information. I find myself referring back to it a lot. In this book, she begins by explaining when she was in medical school, she herself was diagnosed with fibromyalgia. She treated many people with fibromyalgia at The Frida Center, but as of current she has focused her attention to fibromyalgia research instead of patient treatments.

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In the video, she spoke of recent research and discoveries made in fibromyalgia studies. Liptan believes there are missing links in fibromyalgia research that are preventing new treatments from being discovered. In 2021, there was a study done on fibromyalgia and mice. They took antibodies from people who were diagnosed with fibromyalgia and injected the mice with these antibodies. The results are very interesting. I won’t go into detail of the study here, but I will include a few links at the bottom for you to read. The mouse study did not receive as much public attention due to the fact it took place during covid, and media releases were all covid related.

Fibromyalgia and the mouse study overview:

Researchers took blood samples from people with fibromyalgia and injected the IgG (antibodies that stay in your system) antibodies into mice. The mice were found to take on fibromyalgia symptoms that people with fibromyalgia often report as problematic. I find the findings very interesting. It sure makes you wonder what other undiscovered information about fibromyalgia is out there. They also took antibodies from people without fibromyalgia and injected these antibodies into mice to show the difference between the two groups of mice.

1. The mice appeared to be more sensitive to pain.

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2. The mice were more sensitive to cold.

3. The mice were observed to have lower grip strength.

4. The mice showed decrease locomotive activity.

5. The mice showed reduced nerve fiber density in their skin.

6. Once the antibodies cleared from the mice after several weeks, fibromyalgia symptoms disappeared, and the mice returned back to normal.

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7. The findings reporting in the study could indicate that fibromyalgia has an immune response and could possibly be an autoimmune condition. More research is needed to make these findings accurate.

Liptan explains in her video that the mice displayed pain-like behaviors. The mice showed that their nerves were hyper-excitable. The mice also had reduced activity meaning they were not walking around as much and appeared tired. Maybe their paws hurt so they didn’t move around as much. Nerve damage was also noted in their feet. Liptan continues to explain that the study also showed that the antibodies started to bind to a specific portion of the mices’ spinal cord – an area of the spinal cord which is important- where pain signals are interpreted by the brain. This study may help build the connection between the belief that in fibromyalgia there is a neurological component and an immune component. The new discoveries could help scientists understand what is going on in the muscles nerves and why our brain is hypersensitive to pain. Discoveries in the mouse study indicate there is an immune response component – making fibromyalgia an autoimmune disease.

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We know fibromyalgia has existed for years, but I found it so hard to accept that there is no one test to diagnose fibromyalgia and to treat fibromyalgia. There has been a criteria list developed over the years that one must meet to be diagnosed with fibromyalgia, but there is also lot of ruling out other conditions before diagnosis as well. I know the brain is powerful, but I find myself confused at the thought that the brain misinterpreting pain signals can cause so many other symptoms to arise. How can the brain cause rashes and skin conditions to form? Why do many people with fibromyalgia develop irritable bowel syndrome or have bloating issues to arise?! Why are those with fibromyalgia more susceptible to developing chronic dry eye? There are so many unanswered questions. There must be missing links.

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Liptan goes on to explain with the new discoveries in the mouse study, she’s positive there will be more research on fibromyalgia taking place in the near future. She hopes this research will help form new treatment routes. Liptan shares, pharmaceutical companies need to see a target – something they can intervene in with a medication. If they see this target, they will put billions of dollars into researching. Liptan has already been contacted by a pharmaceutical company asking her opinion about a new medication being made to treat fibromyalgia. Combining what scientists already know and the new findings through recent studies will help unravel more accurate treatment options for fibromyalgia.

It brings hope of finding a better treatment closer to reality when new discoveries are made. Wouldn’t it be great to be able to say one day, “i used to have fibromyalgia!”

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Mouse Study Links:

  1. https://www.the-scientist.com/news-opinion/mouse-study-suggests-fibromyalgia-has-autoimmune-roots-68944
  2. https://pubmed.ncbi.nlm.nih.gov/34196306/
  3. https://www.sciencealert.com/mouse-study-suggests-fibromyalgia-really-is-an-autoimmune-disorder
  4. Here is Dr. Liptan’s video on research and the mouse study. https://www.youtube.com/watch?v=TFQV6hoGS14

Five of the Hardest “pills” to swallow when diagnosed with a chronic condition

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I saw the above picture floating around facebook this week and realized how true these statements are.

Five of the hardest “pills” to swallow in regards to chronic illnesses:

1. Giving up your career. Most people who get diagnosed with chronic conditions often have to face the dilemma of continuing to work or giving up their career or job they are employed in. No matter what job path you follow, the road can become difficult when you factor in a chronic condition like fibromyalgia. Fibromyalgia is very unpredictable and varies day to day. While battling the intense pain, extreme fatigue and any other symptoms that arise, punctuality at a job dwindles. Did you know the pain chronic pain sufferers feel would send people without pain conditions to the hospital seeking relief?!? If I went to the hospital every time I had pain, I would live there because the pain never really goes away. Most people will continue to work for as long as they can to avoid financial burdens. Let’s face it, cost of living is getting expensive and continues to rise every day. Others may not have the opportunity to even consider limiting work hours or ceasing work completely – so they carry on ignoring the pain and other symptoms the best they can. Everyone’s situation will be different, and each and every one of us will have to make the best choice for our circumstances. There are a lot of aspects to consider before making your choice. Writing a pro and con list may help you make your decision. In a study it showed that working can improve one’s overall health and well-being, along with decreased fatigue and pain levels. I’m not so sure I agree with this study, as I found the complete opposite. Maybe for some people fibromyalgia is milder and not so disabling, but for myself I felt I could not continue to work due to the unpredictability and forever changing symptoms that rear their ugly heads. Working as an educational assistant in schools with children with developmental challenges became too overwhelming and demanding that I remained off of work.

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2. There is no cure for your illness. Before I got my solid diagnosis, I yearned to know what was wrong with me. All the unexplained symptoms were very mentally and physically draining. When I finally got told it was fibromyalgia, I was happy to have a diagnosis, but finding out there is no cure is a slap in the face. It usually takes a long time period before one is diagnosed with fibromyalgia, leaving that person trying to manage the symptoms until then. We learn how quickly fibromyalgia can alter life – then to be told there is no cure is difficult to absorb. You wonder how you will survive the rest of your life in pain and start to wonder if you have the strength to do so- somehow you manage to find the courage to get through each day. It can be overwhelming to think about trying to manage a condition the rest of your life that is forever changing. Day by day! That is my best advice. I find looking too far ahead is overwhelming and the anxiety begins to set in. I learn to wake up each morning and gage what my day may look like. If I wake up feeling not well and in pain my day is low key.

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3. Losing friendships/relationships

Sadly, chronic pain conditions can put a strain on one’s friendships and relationships. When one is diagnosed with a chronic condition their capabilities alter daily. Friends I once had connections with, I know longer do because of the limitations fibromyalgia creates. I find myself scared to make plans, because I never know how I will feel. Family and friends may not understand why you avoid going out with them – I try to be honest and make sure they know it is for this reason and I am not avoiding them personally. Your once shared hobbies/activities may soon not be able to be your hobbies anymore due to your condition. For example, you may have joined a sports team such as pickleball or badminton but had to give it up due to high pain levels. You soon lose connection with the other team members because you no longer have anything in common. Fibromyalgia can also strain marriages. A study conducted by the Mayo Clinic reported the following: 1. One out of four felt that his or her spouse didn’t understand fibromyalgia. 2. One out of ten people reported fibromyalgia helped lead to a breakup. I’m lucky in this aspect. My boyfriend is very understanding and supportive.

Chronic pain sufferers will also isolate themselves socially. I know I have. Going out or to visit people can become exhausting. I’m always hesitant to go too far from home because I’m scared the pain or fatigue will go out of control (which happens often). To those reading this who do not have fibromyalgia, I want you to know we do want to engage but dealing with chronic pain makes it difficult. The friends who still message, stop by for visits and understand why we cancel plans spontaneously – thank you!

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4. Yearning to do things your body no longer allows. After being diagnosed with fibromyalgia, my entire life changed. Pain and fatigue put a major damper on how one used to live their life. I miss being spontaneous and taking random road trips just because I could. Now road trips have to be planned carefully and around how I feel. I’ve had to learn to let hobbies go and learn to love new hobbies. I used to love to walk long trails and hike, now if I push myself to do these activities, I know I will be bed ridden for days to come. I’m slowly learning I have to be ok with driving around to look at the sceneries more than hike through them. I used to read a novel a week. I’ve had to learn to love audiobooks, because I can’t concentrate enough to read the sentences to myself. I even tried other activities such as paint by numbers, diamond painting and began puzzles again. What do you miss?!

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5. Accepting you are chronically ill. This is one of the hardest things to do. If you have not read my blog on the grief cycle, please do! Acceptance is the last step in the cycle – a very difficult step at that. Lots of people never really learn to accept being chronically ill. we just learn to be ok with it as life carries on. It took me almost three years to accept my condition and not be so angry all the time. There is no time frame to accepting your reality – of being chronically ill!