I seldom post about fibromyalgia, because 1) it seems like pointless whining much of the time and 2) I have health problems more serious than fibromyalgia with which I’m trying to cope. However, the recent spate of commercials about fibromyalgia caught my attention and I checked out the website. It’s often difficult to explain the problem, but I thought this explanation was excellent.
The pain of fibromyalgia is different from the pain of an injury, such as a broken bone. With the broken bone, the perceived pain comes from damaged tissue so the message is a true one. In fibromyalgia the tissue is not damaged, but the perceived pain is as bad as the broken bone pain—or even worse. The difference is that the message is not true. When the fibromyalgia patient feels a stabbing or aching pain like a knife stabbing, a look at the tissue will reveal that the message is false. That doesn’t make the pain feel any better, but the lesson is important to understand. The abnormal chemical levels in the spinal cord area are changing, amplifying, or failing to control the message.
My symptoms started in the mid-90s, and the most frustrating part was how long it took to get a diagnosis. General practitioners referred me to various specialists and the short version is that I ran up large medical bills while getting blown off. I’ve since learned that is the norm for people who have been diagnosed with fibromyalgia, although it has gotten better in the last decade. I finally went back to the psychiatrist who had treated me for PTSD and dissociative disorder and got him to write me a note saying basically that not only was I cured of any psychological problems, but that “at the height of her psychiatric symptomatology, she did not have significant musculoskeletal complaints.” With my “sanity note” in hand, I returned to the very unhelpful rheumatologist who had told me I wasn’t sick. After he read it, he said, “You have fibromyalgia, but I didn’t want to tell you because there’s nothing I can do for you except give you narcotics and I won’t do that.” I don’t even know if it’s ethical to withhold a diagnosis like that, but it was certainly immoral. The jerk.
The source of my fibromyalgia could be several things I know about, or something I don’t. I had a serious physical trauma, which can lead to “post-traumatic fibromyalgia,” and I had an acute case of (usually harmless) cytomegalovirus, which may also have caused it. No telling, really. It would be nice to know, but it doesn’t change anything. Everybody has a story, and none, it seems, are the same.
I did eventually find a great rheumatologist, and my fibromyalgia is managed by a combination of things including stretching/exercise, rest, careful scheduling so I don’t over-do, prayer and devotions, diet, a hot tub, a TENS unit, and yes, pain medicine. I try to avoid the narcotics - I’m quite fearful of becoming addicted - but sometimes I do use them. So fibromyalgia can be managed using a variety of methods and tools. Sometimes things are better, and sometimes they’re worse. I had a really great spell after Hurricane Katrina - by God’s mercy I had all the energy and strength I needed to get out there with my chainsaw cutting trees, hauling trash, mowing yards, dismantling patio covers, gutting houses, and all kinds of recovery work. And other days I just feel like crap and stay in bed, doped to the gills.
Overall it is manageable and life does go on, so if you are recently diagnosed, there is a lot of hope. This new fibrohope.org website they keep advertising looks like a good resource, as is the book, Fibromyalgia and Chronic Myofascial Pain: A Survival Manual.
written by Laura
I’m not quite that geeky or quite that wealthy - I’ll stick with my Capresso, thanks. Every morning it wakes up fifteen minutes before I do, grinds the beans, filters the water, and brews up better coffee than Starbucks.
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