All posts by dsf2779

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

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

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

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

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

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

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

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You can’t put a time limit on learning to manage fibromyalgia or any chronic condition

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When I first got diagnosed with fibromyalgia I was set out to fix myself – the doctor wrote a letter to keep me off of work for two weeks to try to figure out how to get a handle on my fibromyalgia. Little did I know, learning to manage fibromyalgia was not just a two week process. My two weeks on medical leave ended before I even figured out what fibromyalgia was! Weeks turned into months, then a year – Here I find myself three and a half years later. I have realized you can’t put a time limit on learning to live with fibromyalgia – as it can change drastically in minutes. After all – it is considered a chronic condition.

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My doctor referred me to a persistent pain clinic after I had a rheumatologist confirm my fibromyalgia diagnosis. Pain clinics usually function as a multidisciplinary team. The team works together to help relief pain and help you learn how to maintain the pain on a daily basis. I had high hopes when I finally got a call back to come in for my initial appointment. After a few appointments at the pain clinic I soon questioned myself to whether I made the right choice in attending a pain clinic. There are many mixed emotions on pain clinics. Some people feel they have benefited from them, while others are at the totally opposite end of the scale and express they have not helped manage their chronic pain at all. My experience was by far the worst experience of my life.

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With that being said, I come to my first word of advice about learning to live with fibromyalgia.

1. Take your health into your own hands and take responsibility. Don’t wait for someone to “fix” you. I soon realized that many health care providers did not want to help guide me in trying to manage my fibromyalgia. It is not our fault we got diagnosed with fibromyalgia, but it is our responsibility to step up, and try to improve symptoms.

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2. Learn your limitations! Do not let anyone else determine these limitations for you. You know your body best- especially if you learn to pay attention to the warning signs! I always explain to doctors that I know I am close to my limit by a certain level of pain or fatigue at the time. No one else can determine this, but YOU! Obviously everyone has a different pain threshold and tolerance. It took me months to realize when to stop and rest. I can’t even begin to put it into minutes. Usually we are asked by health care providers how long can we work at a task before the pain or fatigue set it. I stopped trying to explain this to people in minutes, because frankly it changes everyday. I now explain – until I feel a certain pain level or fatigue.

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Let’s talk about pain threshold for a second. A pain threshold is a ” minimum intensity at which a person begins to perceive a stimulus as being painful.” If you push yourself way over this pain threshold – you will experience more pain or a fibro flare. Experts say to push yourself just above this threshold line, to allow your pain tolerance to slowly increase.

3. Learn your strengths! I learned a long time ago, instead of concentrating on weaknesses, one should find their strengths. Your strengths can help build up your weaknesses. If you focus solely on your weaknesses you may feel defeated. Fibromyalgia can bring about many weaknesses/limitations. By building off your strengths, one will be more motivated and involved in their treatment routes too! Example: I may be able to walk for 10 minutes at a time. Before fibromyalgia took a front seat I could walk hours on end. However, walking 10 minutes is a strength in my eyes. Not my weakness. I can still walk and move! A ten minute walk is better then zero? Correct?

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4. Don’t compare yourself or allow anyone to compare you to others. If you know others with fibromyalgia and you are also faced with having to learn to live with fibromyalgia – don’t compare yourself to them. Don’t let health care providers compare you to other patients with fibromyalgia either! Your fibromyalgia journey is your own. You can’t begin to compare yourself to others. You may experience the same symptoms, but the way your body responds will be far different. I’ve had health care providers tell me they saw success when a specific patient did a certain exercise routine. That same routine caused me flare ups every time.

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5. Self care is not negotiable. Life gets busy and it begins to pass by in the blink of an eye. Our schedules get hectic and we often forget to take those moments for self care. I soon realized when living with fibromyalgia, self care is not an option – it is a SURVIVAL tool. You must take those moment to indulge self-care practices – even if it is five minutes to watch the last few moments of the sunset disappear behind the horizon while you drink a cup a tea from your favorite coffee mug. There are many other ways to take part in selfcare. Try a 30 day self care challenge like the one below!

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6. Learn to live life at a slower pace. Ever hear the saying, ” stop and smell the roses!” It simply means slow down and enjoy life. It is hard to enjoy life when we live in constant pain all the time, but living with fibromyalgia has taught me to slow down and look at life a little differently. When I slowed down ( I was always on the go) my pain levels began to lower. Having a slower paced life, does not mean you have failed. It means you are doing what your body needs – and that is okay!

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Now is all we have. We don’t know what an hour from now will look like or even what tomorrow will bring. One moment you are feeling well enough to get something done, the next there is severe pain ruining your day. The unpredictability of fibromyalgia had made me realize I have to live in the NOW. Is this why we are often told to work at being more mindful? Did you know practicing mindfulness can help relieve stress, lower blood pressure, reduce chronic pain, and improve sleep!

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I have come to the conclusion learning to manage fibromyalgia is a lifetime process. You cannot put a time limit on this process. I found when I did try to set a time frame, I became frustrated and discouraged when those goals were not met. Day by day – or better yet minute by minute!

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

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

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

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

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

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

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

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

2. High percentage of false positives are detected.

3. The cost of the test is $1080!

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

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

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

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

Fibromyalgia makes even grocery shopping difficult

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

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

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

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

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

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How to make grocery shopping easier with fibromyalgia:

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

2. If possible take someone shopping with you.

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

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

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

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

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7. Use motorized riding carts if you need to.

8. Park as close to the door as possible.

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Four reasons I blog about my fibromyalgia journey…

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

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

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

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

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

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

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

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

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

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

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

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

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

1. Music

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2. Resting in bed

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3. Reading

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4. Time with pets

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5. Puzzles

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

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

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

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

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

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2. Slow down! Don’t push yourself!

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3. Give yourself time to grieve.

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4. Advocate for yourself.

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

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6. Know your limits!

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

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

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9. Breathe. Remember to breathe!

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

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

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

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

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

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

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

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

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

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

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

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

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

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23. Deep relaxation and meditation helps.

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

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

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26. Do something every day that warms your heart!

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

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

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

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

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

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

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

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

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

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

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

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

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

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40. Do not let fibromyalgia define who you are!

What I wish I knew early diagnosis of fibromygia!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

1. Feeling annoyed

2. Feeling anxious

3. Feeling panic

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Other symptoms I experience:

1. Pounding heart

2. Tightness in chest as anxiety increases

3. Headaches may appear

4. Increased pain levels

5. Sounds feel like they echo within my ears

7. Loss of concentration

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

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

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

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

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

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

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