This week, after flipping through older posts and recently talking to one of my friends (I had a great night out Thursday without the boyfriend,) I realized that I mention fibromyalgia often without explaining what it is. I also remembered that most people probably have no idea what fibro is or isn’t considering most people’s interaction with the syndrome is drug commercials. So since fibromyalgia is a very complex syndrome with more theories than answers, I will slowly be doing a series of posts as crash course on the overall syndrome and my first hand experience with it. I also think that one of the things that’s hurting people with fibromyalgia the most (from limited research to not being diagnosed) is a lack of awareness and understanding in the medical community, people who have or have loved ones that have the syndrome, and by the general population. For this post, I’ll start with a brief overview, diagnosis and problems that face diagnosis.
Quite simply in medical Greek “fibromyalgia” means “muscle pain” and that is the only symptom that all fibromyalgia patients have in common. More specifically, fibromyalgia is chronic pain that is widespread throughout the body (has to be in all four quadrants.) However, most people with fibro exhibit at least one (if not many) of other symptoms from an extensive list of potential symptoms or related conditions (i.e. for me, chronic fatigue, gluten sensitivity, headaches, reactive hypoglycemia, nerve pain, mental fog also called fibro-brain, and muscle spasms.)
Fibromyalgia is a difficult condition to truly diagnose (no blood test, no x-rays, nothing conclusive,) and is thus a popular syndrome for hypochondriacs to mimic, which also hurts the overall credibility of the syndrome to many people. Another problem facing the diagnosis of fibromyalgia is that many people can go to many different doctors without being diagnosed. I remember having symptoms of fibromyalgia as early as 10, but was not diagnosed (despite going to many doctors) until I was almost 21. The reason for this is that fibromyalgia symptoms can overlap with other conditions that a doctor is more familiar with, and thus a patient can go for years misdiagnosed, or because there are no conclusive laboratory tests for fibromyalgia, many doctors assume that the patient’s pain is not real. I spent many years dealing with both kinds of doctors. My general doctor that my parents always dragged me to would test me for hypothyroidism, and when that came back negative, he would tell me I was just depressed and that all my symptoms were caused by depression, never mind that I clearly explained that I was starting to feel depressed from feeling like crap all the time and being unable to function properly. Many Orthopedists I went to assumed I was a hypochondriac or quite simply “didn’t know what to tell me,” instead of looking more closely at my chart, realizing I had been there more often than most people end up in their lives, and had me sent to a doctor that could have checked me for conditions that cause chronic (mostly phantom) pain.
Another huge problem with fibromyalgia diagnosis is the everyday treatment of the people who have it by their loved ones. Two of the biggest problems I had growing up was having symptoms that most people associate with illness, like headaches or feeling achy like the flu, but never coming down with anything and having very minor injuries feel like major injuries from anywhere between an hour and a few days. My parents assumed I was a hypochondriac that wanted attention or didn’t want to go to school, or that I was quite simply “a wimp.” As much hurt and pain their assumptions have caused me mentally and emotionally, the logical part of me does understand that they didn’t know better since no doctors had suggested it, the internet was in its infancy, and information about the syndrome was hard to come by. But it is because of this history of being called “a wimp” that caused me to assume that my pain was normal, that everyone always felt achy and slightly twisted ankles always hurt so bad. So I admit there was a period between the ages 16-20, I didn’t bother to mention pain since I assumed it was normal. It wasn’t until I started getting intense nerve pain and muscle spasm problems that I started to re-evaluate my pain.
The only criteria for a diagnosis of fibromyalgia (which according to the American College of Rheumatology the doctor should be familiar with fibromyalgia) are a history of widespread pain for three months and the presence of pain at 11 out of 18 recognized “tender points” from 4kg of pressure. Even then these criteria are interpreted differently by different doctors. The last doctor I had before my current one, which was the first to even suggest fibromyalgia, simply poked my tender spots to see if there was any pain versus doing the actual “test,” and then told me that despite my history with chronic pain, I could not be diagnosed unless I had the pain for three more months. If you have exhibited symptoms of fibromyalgia for years if not a large portion of your life, and a doctor tells you this, tell him he should learn to listen to his patients and find another doctor. My current doctor accepted my personal history of pain as history, was horrified that another doctor told me I couldn’t be diagnosed for three months, and proceeded to do the “tender points” test properly. My doctor told me he was going to put 4kg of pressure on points on my body. He started by applying 4kg of pressure to the middle of my thigh so I could get an idea of how it felt; 4kg is almost 9 lbs, and really isn’t a lot of pressure, and did not feel like anything on my thigh. But when he applied pressure to the “tender points,” I was in so much pain I was uncontrollably crying; I’m not even sure if he did the full 18 or stopped at 11 because I was in so much pain.
If you think that you or a loved one might have fibromyalgia, instead of immediately going to your general practitioner do some research online (searching google, web forums, etc.) and find a doctor that has experience with fibromyalgia (they are probably the best people to diagnose you.) Also do extensive research on fibromyalgia (there are other chronic pain disorders.) And if you plan to get the “tender point” test done, expect that you could continue being sore from the test for at least a couple of hours (I think I was sore for 6 hours.)
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