“Fibro what?” Fibromyalgia, it’s getting more commonly known now, but that was the usual response I got from people when I was first diagnosed with it 12 years ago. This mysterious, confusing , frustrating and unpredictable condition has been my constant companion for those 12 years. It’s usually described as a condition that causes painful muscles and fatigue, which sounds pretty straightforward. I find that some people translate those words into “a bit achey and tired”! I also find that some people need a good slap! Don’t be fooled, this condition is probably better described as a Hypersensitivity to everything.
Just imagine for a moment if your loved one were cuddling up and stroking your arm, nice isn’t it? Except if you have fibromyalgia that stroking first becomes slightly irritating, then uncomfortable and soon your skin feels like it’s burning. That’s hypersensitivity for you.
Just imagine for a moment that you were opening a can with a can opener, you can feel the pressure as you squeeze and turn the handle, but it’s not usually painful or even uncomfortable is it? Except if you have fibromyalgia, that squeezing and turning causes deep pain in your fingers and thumb and a burning sensation in your wrist , neither of which goes away for several hours…yes that’s right hours.
Just imagine you need to pop out to the corner shop, at your normal walking rate it’s takes about 3 minutes. No sweat then? Except if you have fibromyalgia, walking to the corner shop becomes a marathon. After the first two or three steps your feet hurt, your ankles, knees, hips and back are complaining loudly and the hand holding your stick hurts to grip it.You are breathless and your heart is pounding, not from anxiety, but from the sheer effort of coping with the pain and the fatigue. By the time you’ve walked about 20 yards you really, really need to rest, only there is no where to sit and you have to lean on your stick. Repeat this every 20 yards or less until you reach the shop. Do the shopping, pick up the bag and head back home, only now you have a bag to carry too. The distance you can walk without a rest reduces considerably and your hand, arm and shoulder start to hurt from carrying a not heavy bag. When you finally get home you are too exhausted even to put the shopping away, and you go spend some time with your best friend the sofa, probably for at least a couple of hours. Hope you don’t need the loo or to go and answer the door during that time because the effort will be waaay too much.
That’s only three examples folks, but imagine this if you can. EVERY activity, from waking in the morning to going to bed at night causes pain and exhaustion. Break down all of those activities into their component parts … getting out of bed for example, involves turning over, pushing back bedclothes, swinging legs over the side and the biggie, sitting up and then the even bigger biggie, standing up. ALL of that hurts, ALL of that is tiring, each component part bringing different pain, and accumulating the pain and fatigue so each part is harder than the last one. You may have to rest between movements and then rest again before the next activity, taking meds, getting a drink going to the loo etc, and don’t talk to me about going downstairs that happens about 2 hours after you’re up, rested toileted , rested , washed, rested. Not enough energy to dress before going downstairs , that has to happen later in the day when you might get a two hour window in which you have the energy to get things done without keeling over. Now imagine that EVERY DAY to some degree or other for the rest of your life. Some days are easier than others without a doubt, in fact some days are great, some are simply awful and even make you wish you were dead. Chuck in sleep problems and you may have an idea of what SOME of fibromyalgia is like. Welcome to my world.