Monthly Archives: March 2023

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!

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

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

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

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

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

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

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

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

2. High percentage of false positives are detected.

3. The cost of the test is $1080!

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

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

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

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

Fibromyalgia makes even grocery shopping difficult

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

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

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

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

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

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How to make grocery shopping easier with fibromyalgia:

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

2. If possible take someone shopping with you.

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

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

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

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

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7. Use motorized riding carts if you need to.

8. Park as close to the door as possible.

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Four reasons I blog about my fibromyalgia journey…

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

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

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

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

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

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

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

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