Over 45 years ago, I started having symptoms of something that had no name and for which there obviously was no test. The symptoms included pain, especially headaches and leg pain at that time. The pain worsened as my period approached, peaking at that time, then lessened for a bit, cycle after cycle. It wasn’t joint pain, it didn’t feel like cramps. It was pain that seemed to emanate from the core my legs. Month after month, year after year, doctor visit after doctor visit.
I can’t totally blame the doctors from the early days. They did their best with the information that was available at the time. Still, it came down to – they couldn’t figure it out so it must be in my head. While I agreed that the headaches were, indeed, in my head, that wasn’t the way they meant it. What they meant was downright mean. It meant I didn’t have anything. It meant I was a hypochondriac. It mean I was imaging it or being a wuss. It meant that it didn’t exist.
Their denial that I had a real medical condition did not make the pain go away or make the condition any less real. It only made me angry.
But I’m an investigator by nature – I had at one time wanted to be a scientist. So I began to track my symptoms. I became an observer of myself and my health. I documented events and problems. Medicine became my avocation. Finally, in a magazine article, I found information that led to a name and description of my condition: FIBROMYALGIA.
I’ve written in much more detail than this about my search for a label in other posts. That isn’t the focus here.
Once the doctors had a label, they had things they could try to help the condition. It was now real. Since it had not be real very long, there were no established treatment protocols. It was all trial and error. A lot of things didn’t work. But at least it wasn’t all in my head anymore!
The tide has turned. Fibromyalgia is the condition du jour, if you will. Drug companies are beginning to realize the gold mine of pain they are sitting on. As part of their search to develop drugs that specifically ameliorate or remove fibromyalgia pain, fibro fog, fibro fatigue, etc, they have begun to advertise — everywhere! Magazines, radio, TV — all are educational venues in their eyes. I’ve discussed the pros and cons of that behavior elsewhere in this blog. Again that isn’t my focus today.
In the past year or so, I’ve noticed my doctor doing a strange thing. When I go in and complain of things that don’t feel like fibromyalgia to me, I’m beginning to get a stock answer. Let’s face it – after 45+ years with this condition, I know rather well how it feels. So I know what to see the doctor for and what I just have to cope with. After 45 years, even the dullest tool in the shed would be pretty good at that discernment, and I am by no means dull. So what do these new conversations sound like?
Doctor: What brings you here today?
Me: I have so much fatigue. I’m falling asleep sitting in front of my computer. Sometimes it feels like work just to breathe.
Dr: Well, you know that fibromyalgia has peaks and valleys. Sometimes it seems to be in remission and then suddenly it can flare up and the symptoms get worse. [yeah, tell me about it] This may just be a normal part of the conditions pattern.
Me: But I’m having trouble doing anything.
Dr: Everything seems normal but let’s do some blood work to see how that checks out [read: We’ll do some blood work to humor the nice lady who thinks she’s got a new problem. She should know by now that fibromyalgia is causing all her problems.]
That’s right folks, no longer do we have denial causing the “It’s all in her head thoughts.” Now it BLAME. Everything is now because of fibromyalgia. The headache: fibromyalgia. The fatigue: fibromyalgia. The pain: fibromyalgia. The palpitations: fibromyalgia.
Let’s blame everything on fibromyalgia because it such a hodge podge of symptoms with few clinical tools to separate it from other medical conditions. That will soothe the patient and let the doctor move on to the next patient in a timely way.
But that’s not how it played out. The morning after that doctor visit, I got a call from him.
Doctor: Hi Bee – I got your test results from the blood work. It turns out you have a very low iron count. It should be between 11 & 15, but your results are a 4. I’m going to start you on iron supplements with vitamin C. The problem is called iron-deficiency anemia.
Me: Okay – I’ll pick some up today.
What I wanted to say was: See! I told you so! I know my own body really well and I knew it didn’t feel like fibromyalgia. So there! Next time listen to me. Don’t blame everything on my fibromyalgia because it’s convenient. Practice real medicine. Listen! Listen well!
My message to any of you who have fibromyalgia is: YOU KNOW YOUR OWN BODY – YOU LIVE THERE ON A PERMANENT BASIS. DON’T LET ANYONE DENY WHAT YOU KNOW IN YOUR HEART AND DON’T LET ANYONE BLAME ANY AND ALL NEW SYMPTOMS ON YOUR FIBROMYALGIA, EVEN IF THE SYMPTOMS “FIT” THE FIBRO PROFILE.