What does having fibromyalgia feel like? I’ve read numerous descriptions and, although there are definite themes shared among us, every person’s experience is unique. I tried to find a blog post that captured all of my particular symptoms with perfect eloquence. I couldn’t. What I found is that, even though I think I’m struggling like a Christian martyr trudging up a slope strewn with shards of ice, rusty screw guns, and carnivorous sticky buns, there is always someone whose pain is worse. Sometimes much worse. That doesn’t offer me much solace. It just makes me sad.
But I do want to explain how fibromyalgia makes me feel. It might help when a friend or loved one doesn’t understand why I keep grimacing during, say, a board game. Maybe after reading this post they will say: “Ah! You feel as if someone has turned your sinews and muscles into sharp metal strands, and is now braiding them quite viciously,” or “Well, no one cares for nails made of hot gravel being pounded into their joints! I’d grimace, too. Carry on, it’s your turn.” Or even “Malevolent sticky bun latched on to your brainstem again, what? No wonder you’re so sluggish and foggy-headed!”
Here’s a simple experiment. It may seem unseemly and unpleasant. First clench one hand tight into a fist. Now choose a part of that fist and bite it, for as long as you can tolerate. Your curled fingers will do. Give it a fair amount of pressure. Give it five minutes, if you possibly can. Notice what happens.
The immediate “victim” of the bite, your clenched fist, will begin to protest. It’s already remorselessly tight, and now something is biting it? Seriously?! Not good. But, there’s more! Soon, your jaw may become tense and tight, even sore. The exertion of holding the fist, along with the bite, will begin to seem intolerable. All you have to do to release the pain is to open your mouth, open your hand. Why are you doing something so ridiculous as biting your fist, just because I suggested it? Please do not do this in public.
If you have fibromyalgia, you probably know where I’m going with this analogy. If you know a loved one who has fibromyalgia, you might have your whole fist stuffed in your cakehole at the moment, and are feeling surly, and I appreciate that.
Fibromyalgia feels as if your body is gnawing on itself, every minute of every day. (Even on the “good days,” when it’s just gnawing with less fervor. On the best days, it still nibbles, like an itch that can never be scratched or eliminated.) As I’ve suggested, your body itself is already intolerably “tight.” It has become a fist that never opens. Then, you visit it with numerous indignities, and they are certainly not confined to the hand — you sink pain into the neck, into the knees, into the edge of the jaw itself. Note that I do not use the passive voice in the sentence above, because you sense that your own body is conducting this cruelty.