This site contains my musings on and research about one of the strangest conditions I have ever heard of- Fibromyalgia. It is also a condition I happen to be afflicted with.
For me, it is nothing like the commercial for Lyrica, where the woman walks around perfectly normal after popping her pill. I know of few cases of that much recovery. It is a much more devastating and debilitating condition than that. I hate this commercial because it makes FM sound like it is just about a little nerve pain, when it fact, it is a huge constellation of symptoms that can be completely devastating and debilitating. Widespread pain, brain fog, fatigue, disorientation, and a whole bunch of other symptoms make normal life impossible.
Not only is it little understood by the public, almost nothing certain is known about it by medical science. We know it disproportionally strikes women, by some 9 to 1, and we know it seems to be triggered by some type of physical trauma in some people. There is now a lot more evidence for actual organic changes in the brain. What we don't know is what it is exactly, what causes it, and even how to diagnose it. It is not a disease, it is a syndrome- essentially a collection of symptoms.
In fact, a few doctors are fibromyalgia deniers, claiming the condition does not even exist. Some claim it is just depression. Some claim it is a psychiatric condition. Go to the comments on web sites about FM and you'll see tons of people chiming in about how FM sufferers are just whiners, looking for attention, it is all in their head, and other cruelties.
To make things even worse, even when completely debilitated and unable to work, fibromyalgia sufferers are often denied disability. Because it so disproportionally strikes women, they are told it is all in their head.
I do believe it is all in our heads, because I believe that it is a neurological problem. That is becoming the generally accepted notion. The symptoms are too bizarre, too random, too classically neurological for anything else to make sense. Sure, the term my be too inclusive, pulling in a wide range of conditions that are not yet understood. It is mysterious and strange. You cycle through symptoms seemingly at random. But those who have it are really suffering. That part is very real.
Pain is only a small part of my problem. Originally, it was my main problem, and doctors focused on that in trying to diagnose me, but as more and more strange symptoms began to appear, it became quite clear to me that this was neurological, not rheumatological as was the original focus in treating me.
Any casual student of neurology and its history and classic cases will immediately understand just how much about the brain we don't know, and how difficult it is to figure out what is going wrong. That is why this syndrome is so difficult to get a handle on. My guess is that it has many causes.
Since having read a bit more about neurology, what sets this apart to me and makes it so bizarre is that the symptoms step in and out like actors on a stage, each one having a little time in the spotlight before retreating to the darkness of the wings. Many of the symptoms are suffered more long term by others with better known and defined neurological conditions, but they do not come and go seemingly at random. For fibromyalgia sufferers it is if we are trapped in a Costco, with nice young women forcing upon us random samples of neurological difficulties, and as soon as we finish with that we stumble into another young woman with another different sample we are forced to try.
Since having read a bit more about neurology, what sets this apart to me and makes it so bizarre is that the symptoms step in and out like actors on a stage, each one having a little time in the spotlight before retreating to the darkness of the wings. Many of the symptoms are suffered more long term by others with better known and defined neurological conditions, but they do not come and go seemingly at random. For fibromyalgia sufferers it is if we are trapped in a Costco, with nice young women forcing upon us random samples of neurological difficulties, and as soon as we finish with that we stumble into another young woman with another different sample we are forced to try.
Fibromyalgia is very individualistic. The way I have experienced this, and what works for me, may be very different for others. I am now on Savella which took me from almost no functionality to having some semblance of a life- albeit with limitations. It does not work for everyone- no treatment seems to, and according to my doctor my response and improvement was much greater than what most experience. I consider myself lucky in that regard.
