Once you get past the ‘Have you tried *insert generic treatment here* and people actually start to understand that Fibromyalgia is a real controlling force in your life the question I tend to hear turns to be what does Fibromyalgia feel like?

Like almost everything in spoonie land, there is no one size fits all answer here. It doesn’t feel the same for everyone but I thought I’d share a couple of opinions from fellow spoonies on their daily struggle.

Frank (yes, guys struggle with Fibro too but it is less common) has a great explanation:

It’s like having your nervous system turned up to 11. All the time. With no end in sight and only minor times where it is lessened. You feel everything that is touching you (even your clothes and light breezes) all the time, which can range anywhere from fairly irritating to “why am I being rubbed with coarse sandpaper?” Every joint and muscle feels like you’re just completed a marathon when you’ve just been sitting still. People tend to see you as completely healthy, maybe even wonder why you don’t take better care of yourself. Some wonder why you don’t “just take something for it” as if a minor lessening of pain is worth the damage over using the medicine can cause. Your body language (of being in pain) can be off-putting and isolating. Medical professionals have a hard time believing it exists, and those that do believe can have a hard time figuring out what to do about it. This can make it especially difficult to get help from other agencies that work for people with disabilities. For me, the thing that is the hardest is the lack of human touch. I flinch when touched by someone else, cause it hurts, so it makes others not want to give simple touches, like a hug or a caress, cause they don’t want to cause pain. You have to make a decision for everything you wear or do about how much pain it’s worth. No one can make this determination for you, nor should you for anyone else. Going to work, playing with kids, wearing something tight (or rougher than silk), having sex, having someone simply put their hand on your shoulder; all of these depend on how much pain you think you can take, balanced against doing nothing at all, which has it’s own level of pain.



To top it off; pain is subjective. What’s horrid for one person is manageable for another. Every description will ring true for others with Fibro, but we’ll each have our own story.

I think that last bit is a really important part to note. Pain is subjective.

Not everybody is going to feel things the same way. You’ll commonly be asked (by your doctor for example) to rate things from 1–10 and that’ll be used to form a personal gauge.

It’s also the reason we track your pain and activity on a 1–10 rating with the Fibro remission tracker (also available on Amazon here). That rating is the most useful to you and doctors who are working with you in the longer term.

Katherine also shares a powerful opinion. Fair warning — it can be a rough read.

Like death would be preferable. I’m in the middle of one of the worst flares I’ve ever had right now. Everyday life is feeling like the worst flu you’ve ever had, after running the longest marathon you haven’t trained for, in which every part of you hurts, your own hair irritates and itches you and you have very little energy or tolerance to anything. You get used to that. You accept after a while that this isn’t just a passing phase, this is life and you make the best of it you can. You have better days but rarely great days. Somewhere, some part of you is ill, or exhausted, or hurting or just not right. A flare up can be caused by overdoing it, cold weather, hot weather, because there’s a ‘Y’ in the name of the day or just because. You can’t plan for it, you can’t always feel it coming but you can’t avoid it. This time I think I think it was the food spell that did for me. I have intermittent pain all down my left side that won’t always respond to pain killers. My calf muscles are cramping right now, my thigh muscles (both sides are burning) must be all that energy I expanded getting a shower, oh no, silly me, up know what exhaustion truly is when you know you don’t even have the energy to get into the shower. I’m wearing my occasional reading glasses 24/7 because my eyes are tired and won’t always focus, though it’s a bit of a mystery why I’m bothering because my head is banging so much I can’t really read properly, assuming i can even concentrate on a book much less remember what it was I’ve just read. I’ve had the same conversation 4 times with my child today, partly because I can’t remember doing it the first time, partly because a chronically ill friend seems to disappear off the social scene and out of sight is out of mind. Who wants to chat with a numpty who can’t remember the conversation? On the bright side, I’m great at keeping secrets! Needless to say you’d have to chat with me whilst I’m in bed anyway, I’d apologise for my lack of housework but I can’t even brush my own hair right now so I doubt you’ll notice the piles of washing. I’d get them into the machine but it hurts to walk as far as the kitchen, especially with the limp from my stiff hips & knees, and takes far too much of my energy to load the machine. I currently seem to have an ear infection too, possibly threatening tonsillitis too. Doctors are torn; either everything is connected to the fibromyalgia or nothing is. I don’t really care so much what differing opinions there are, they all agree that I have to make the best and there’s nothing I can do except try to take it easy. I’m cold right now, bundled up with layers and artic weight duvets so give it half an hour and I’ll be shivering again. But I’d really hope to be asleep in half an hour too. No matter how tired I am I can’t sleep, and when I do finally sleep no amount of sleep can relieve that exhaustion. I can’t even type this answer on my laptop because eveb that slight weight is too much on my painfully spasmimg legs, so you’ve got me on my phone. I’ve had fibromyalgia since as long sas I can rember but was only diagnosed 20 years ago. Please understand I’m not lazy, I’ve raised a child completely singlehanded whilst working 3 jobs and being at college full-time studying law, I know hard work, I used to thrive on it, which personally I think has a lot to do with causing the condition in the first place. I do have flares, some worse than others, but this particular one is one of the worst & put me in my bed 4 weeks ago, it isn’t showing signs of easing up anytime soon either…. Apologies for the depressive answer, but it’s a depressive illness. I don’t know when or if I’ll feel better and it hard to stay bubbly and shine knowing that. Pain is exhausting on top of an already exhausted misbehaving body. Still I can try — be assured I have awesome taste in pajamas at least!

It can be hard to really understand what Fibromyalgia feels like if you don’t struggle with some kind of chronic pain. Even a spouse or family member who is faced with reality daily is never going to fully understand.

The attempt is certainly appreciated though.

We all have our own reality and it’s hard enough to see it from someone else’s viewpoint sometimes. Healthline has some interesting suggestions on how you can get a rough idea on how to see life from our point of view:

Make a to-do list for tomorrow. Then, pick only four items on your list to accomplish. If you try to do more than that, the next day you can only do two things. Stay up for 48 hours straight, then read the dullest book you can find. You must stay awake until the end of the book. Walk on a plush carpet while wearing socks and really slide your feet across the carpet. Touch a metal doorknob and think about how that shock feels against your fingers. Now, do it again. And again. And again. Check your bank account to find out that it’s unexplainably been drained of $10,000 overnight. Schedule an appointment with the bank’s manager, who passes you to a customer service agent, then get passed on to another, then another. Run a 10K. You have no time to prepare or train. Just go out and run it, no walking allowed. Turn your thermostat down by 10 degrees. You’re not allowed to put on additional layers. You won’t find a comfortable temperature until things warm up in the summer, at which point things will suddenly be far too hot. Cancel a date with only an hour warning on a Friday night and explain that your child’s sick. See how your date reacts.

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