So what’s fibromyalgia and why should I care?

When you share your diagnosis with someone, you can expect a range of reactions, depending on the condition. Cancer? Sympathy and sadness. Man flu? Derision. Inflammatory arthritis when you’re not obviously old? But you’re too young, but mostly, ouch, that sucks. Fibromyalgia, on the other hand, gets a whole range of its own, from “huh?” and “fibro-what?”, to “I knew someone with that, they were so lazy” and “oh, you mean hypochondria?” and “that’s just a name they made up to keep neurotic women happy.”

Very rarely, you get someone who actually has a clue, and whose response is “you poor thing, that’s awful. Let me know if you need anything when it’s flaring up.” And that kind of reaction might sometimes have me in tears, and other times wondering just how hard it might be for the rest of the human race to be that decent.

I’ll be honest, I underestimated what a chronic fatigue condition can do to people. Which is silly, when you consider how much of my upper sixth I lost to glandular fever. But it’s easy to forget how debilitating things can be, if you ever knew, and there are times I’m not proud of where I probably gave a less than sympathetic response to someone. If you’re one of them, I’m sorry.

So if you’re here because you put fibromyalgia into a search engine to find out what your friend or relative has, this one is for you.

What’s the worst thing about fibromyalgia?

That’s actually quite a tough one to answer. At times I would say, all of it. The pain is no fun, having no energy to look after yourself or your child, unable to do so much as read a book or watch a box set on Netflix? Also very little fun. Crashing and having your core temperature drop a couple of degrees because your body has so little strength it’s had to prioritise one key process like digestion over another key process like maintaining body temperature? Not a party, either. Knowing that if you draw on every last reserve you have you can do one thing, but that you’ll pay for it for days after? Yeah, that sucks, too. There’s other stuff, of course, but these are for me the worst bits, and the very worst of all is the being unable even to rest peacefully when you’re so far beyond exhaustion you’re practically in tears and you can’t sleep, can’t settle for the new and interesting ways your body makes you feel pain, and can’t concentrate enough to distract yourself.

OK, that sounds pretty grim. But you can take something for that?

If only. The thing is, once upon a time the doctors thought fibromyalgia was an auto-immune condition, which is one of the reasons that rheumatologist departments seem to make – anecdotally – most of the diagnoses. That’s how I was diagnosed: my OT said I should ask my rheumatologist about fibromyalgia, since I was due to see him in an hour. He asked if I minded him prodding me and then proceeded to make me scream when he palpated what I later discovered were the pressure points so common in fibro patients. That hurt. But he was pleased because, as he said, it was obvious, really, and he should have thought of it before. For a moment I had hope, because that sounded like there was hope of a treatment, but he soon cleared that up.

Fibromyalgia, it turns out, is a Central Nervous System disorder. By all accounts, they don’t know what causes it, and they don’t have a cure for it, and right now they don’t have any treatment for it, either. While there are some people who benefit from taking pregabalin, gabapentin or even amitriptyline, I react very badly to those drugs: suicidal ideation, hallucination, insomnia are all present, and it’s not like I sleep much anyway. It makes no sense to persist. So there we are, incurable and untreatable. If there were any clinical trials I’d be first to volunteer, because the hope of something to make my life normal again is too much to pass up. However, there are no clinical trials into fibromyalgia running local to me, and maybe not even elsewhere in the UK. Not that I’m in a fit state to go anywhere if there were.

So where do we go from here?

I wish I knew. In the past, even medical professionals needed some persuasion the condition exists. I can recall asking the neurologist I was seeing about my migraines whether fibromyalgia was a possibility, some time around 2008. He said someone with my psychiatric history – depression, as they thought at the time – would be unlikely to receive such a diagnosis. In other words, he thought it was all in my mind.

Most of the ‘treatment’ on offer is group therapy and CBT. It’s about learning to cope with the fact you’re stuck with it, not giving any real tools to reduce the impact of the condition on your daily life. I’d love for a meditation or some affirmations to actually work for me, I truly would. Who wouldn’t? But nothing I have tried has helped to date. My rheumatologist doesn’t sugar coat things. He doesn’t know of anything in the pipeline that will help. And that brings us back to the question in the title.

Why should I care about fibromyalgia?

The chances are high that you know at least one person with fibromyalgia, or CFS/ME, or Lyme disease, or PCOS, or something that has similar impact. The best thing you can do for that person is to try to understand. Be that one person who says “I get it, this is horrible. What do you need me to do?” And follow through. Whether you just offer to pop round and keep them company, or to help them tidy up a bit, or to get some shopping in, or just to give them a gentle hug and fetch them a cup of tea, understanding there is nothing they can be doing to change their circumstances and just accepting and loving them for who they are is the best gift you can give them. Life is hard enough without having to battle lazy stereotypes and ignorance. Having one or more people who understand is priceless.

You should care, because one day it could be you or a loved one. Because kindness costs nothing, and because being a dick takes so much more effort. Because doing something nice for someone who is beyond exhausted, in pain, and struggling just to exist might make you feel good about yourself, while making their day a little easier. And because that person is facing more battles every day than most people will ever realise. Be the friend you’d like to have if you were the one who had this, and believe them when they tell you what they’re going through. It’s little enough, but it can mean the world.

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