"Fibromyalgia doesn't exist; it's just a catch-all that doctors use when they don't know what else to tell you."
Do you believe this statement about fibromyalgia (FM)? Some people do. I posted a question on a email list for a professional group I belong to, asking something from people who have FM. I received a lengthy email in response from a colleague I'd never met. Her email outlined for me why FM is not a real illness and doesn't exist, and that she got upset whenever she heard someone saying that they were diagnosed with it. She said it was a phase that she hoped would go away, because telling someone they had FM did more harm than good.
I thought long and hard before responding. The email had started with something along the lines of "I hope you don't mind dissention," and it ended with something like "I hope I haven't offended you."
I don't mind dissention, as long as we are polite about it, which she was. I didn't think I was offended, but I wasn't sure.
I tried explaining to her through my carefully worded response that anyone can write anything on the Internet. This is one of the great things about the medium, but also one of the great drawbacks. That being said, there is much research going into this illness that has been around for generations, but called by different names. The name "fibromyalgia" was only given recently, as researchers learned more about it.
There are physical findings in people who have FM, such as an elevated level of substance P, a neurotransmitter in the cerebral spinal fluid. Although the illness is far from being solved, this increased level of substance P is one tiny piece of the puzzle that explains why people with FM feel more pain than people who don't have it.
Unfortunately, my response wasn't taken in the way I hoped it was. I am a big believer in discussion, but I don't believe in the "I'm right and you're wrong" approach without discussion. I am perfectly willing to discuss why people may not believe in FM, but I would hope that they would listen to the arguments as to why people do believe it does exist. They don't have to accept them, but some back and forth about the ideas is always appreciated.
This wasn't the case here. Instead, her response was, more or less, "I was afraid you'd react this way but if thinking you have something called fibromyalgia makes you feel better, that's ok." Well, I'm very glad she's ok with it. I'm sure I'll sleep better now. :)
I have no intention of engaging with the email writer any further. Perhaps I shouldn't have responded in the first place. I find it interesting that some people - because I know this person isn't alone - feel so strongly about proving that FM isn't real. What is it about the issue that makes them feel this need to evangelize their thoughts about FM?
Living with fibromyalgia
In case you haven't guessed by now, I do have fibromyalgia. I have had it a very long time, but was only diagnosed a little over a year ago. While the diagnosis hasn't changed how I feel physically, because there are no treatments, it has changed how I feel mentally and emotionally. Even though I knew the pain and fatigue was real, now I really know it. I am one of millions of people who have a similar problem. I am not alone. This isn't in my head. I wasn't a hypochondriac all this time. I wasn't looking for attention.
Because I'm a writer, I've been able to do research and speak to experts on FM for articles I have worked on. I have a lot of information that I haven't yet used, so I am working on something that involves the questions people have about FM.
If you have FM or love someone who does, what questions do you wish had been answered earlier or what questions do you have now that still haven't been answered?
If you leave your questions here, in the comment section, I will be sure to add them to my file.
By the way, earlier this year, I began to participate in a chronic pain/fibromyalgia program offered by a local rehab centre (Fibromyalgia Rehab Program - It's Worth a Try). Unfortunately, it was a bust. Although the people who are part of the program mean well, as far as I was concerned, it was a waste of time and I dropped out after three weeks. So did just about everyone else in the program (there were five of us who started).
For the most part, we sat in a group and listened to the appropriate therapists talk about various issues, sleep, chronic pain, adaptations, etc., but it was all so very basic. There were no questions asked about what we may already have known, so the information wasn't tailored at all. It was just assumed that we knew absolutely nothing, but that wasn't true. The therapists just read from the handouts we received. Although we were encouraged to ask questions, we didn't really have any, because - again - it was all stuff we already knew.
We were only in the gym once a week, for about an hour or so, where the physio gave us a simple program to follow. While this would have been helpful, once a week is not.
So, the intent of the program was good, but as far as I am concerned, I can't see it being very helpful. It needs to be thought out better and presented in a more user-friendly manner.