Thursday, 12 September 2013
I’ve been searching for an analogy to try and explain how it feels to have fibromyalgia. I’ve come a long way in a year. This time last September I was pretty terrified by the tumult of pains that suddenly pummelled my body. In a panic I asked my doctor to test me for lead poisoning. I needed an explanation. The same doctor told me I’d have two weeks off max if I were a premier league footballer. And he told me this apropos of what exactly I still ask myself? It was after sending a two-page complaint about his bullying attitude and compulsive need to make me exercise in front of him that my diagnosis began to take shape. I got referred. Eventually I saw the much-respected Professor Powell and in April he diagnosed me with fibromyalgia as a result of the head on collision with a bandit vehicle two years earlier. He was pretty unequivocal and even when I said I didn’t want to jump to conclusions assured me that this order of events was pretty normal (all the other usual suspects have now been eliminated including Limes disease). Knowing what it is has really helped even if fibromyalgia is an illness that not many people know what it is. I was buoyed by an article linking the inability to turn off pain with a surfeit of sensory nerve endings in the palms and soles of the feet, which happen to be very painful places for me in the morning. “Instead of being in the brain, the pathology consists of excessive sensory nerve fibers around specialized blood vessel structures located in the palms of the hands,” said Dr. Rice, President of Intidyn and the senior researcher on the study. These excessive nerve endings in turn interfere with blood flow and messages through the central nervous system. So it’s not all in the head. Prof. Powell had simply said people with fibromyalgia have trouble turning off pain. I thought this made us seem like people who leave computers on and don’t switch off lights. Perhaps so if these people awoke to discover all plugs and switches had been removed from their homes. And so to my initial analogy. This week my car sprang a leak, which it turns out, was a result of the head gasket going. My car on the surface looks sleek and starts okay. You could drive it very slowly for a short distance but anything else will make it blow up (in layman’s terms). My problem is that no one knows where my head gasket is (the skin perhaps?). But I must carry on or I will rust and become completely undriveable. The point I am so clumsily trying to make is that a very real physical change in the mechanics of the body happens in fibromyalgia. This is what demands a reframing of life. You simply can’t behave as you did before. I can’t replace my head gasket until someone works out where it is but I can drive at a gentle pace with the occasional burst of speed (not strictly adviseable). I have to be prepared to be slapped down as a result but that, as I am now discovering, has its own rewards. Welcome to Painsville please drive carefully and take time to idle your engine.