A couple of people have asked me what fibromyalgia actually is! I get tongue tied and a bit speechless (which is not like me lol) and I wish I had a short, concise, understandable explanation! Any pointers please?
Explaining Fibromyalgia : A couple of... - Fibromyalgia Acti...
Explaining Fibromyalgia
31 Replies
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Hazel_AngelstarAdministratorFMA UK Staff
A chronic health condition where the main symptoms are widespread pain, fatigue, sleep disturbances and cognitive dysfunction xxx
Hypothyroidism, perhaps?
Hazel_Angelstar. That's it in a nut shell. I shall use that if I may.
Thanks guys. I like them. It'll save me saying "Look, everything hurts, I'm constantly knackered, I lose my balance & walk like I'm ratarsed, I dunno what day it is half the time & I may cry at any time. OK?" 😉👍🏻
Stevejj in reply to
Or even mouse bummed lol xx
Steve, that went way over my head haha🤪
Lol my kids got me a card saying it xx
in reply to
I actually like that reply. Sums it up and made me chuckle.
movinalong11 in reply to
Wow! I cant believe how many of these answers fit me to a T!
Look up The Spoon Theory on the Net. It won't actually tell you how to describe Fibro, but will help you explain to folk how it affects Fibromites in everyday life.
in reply to Midori
I had never heard of the spoon theory before. I checked it out because you mentioned it. Thanks very much. It's a great story and one that I will share often.
I usually say, it's a neurological condition where the brain wrongly interprets pain signals. Plus, overwhelming fatigue, amongst other symptoms. If that doesn't help, I use the analogy of a car stuck permanently in high gear. Eventually it wrecks the engine and other parts, and the car stops working efficiently.
I tossed around the idea of central sensitization for many years, but the linksites.google.com/view/fmsbi... suggests otherwise.
I also doubt that theory. It'd only explain part of our symptoms.
I just tell people to go on the NHS website or Google it! I find it easier than trying to explain or send them the links and let them read at their leisure.
in reply to
Thats what I told my neighbour last week. Who looked like she was sucking a lemon when I said it.....
in reply to
When life gives you lemons.... 🤣🤣🤣🤣 Sometimes you have to laugh to stop crying
in reply to
Definitely! My 2 sons have autism and ADHD and so I have had plenty of comebacks practice over the years about invisible illnesses! Got some crackers 😉
in reply to
I'm autistic and I'm always get asked to prove that as well! Aspergers. I'm very good at blanking out people and voices. Or I just tell them,"it'd take too long to explain" and walk off. I hate talking to people at the best of times 🤣😂 I've been wearing my sunflower lanyard ever since Gatwick Airport started them. That covered my autism but now, it covers all invisible conditions, so I tend to wear mine when I'm going to meet strangers. Can stop awkward conversations.
in reply to
Good idea. I have been diagnosed with ADHD. I wear the lanyard in shops. Shuts people up!
in reply to
I keep it hung on my rear view mirror in my car, along with my blue badge on display. No one questions the two, especially now during Covid when I go to stay with my support bubble!
JayCeon in reply to
My wife tells people it's a rare rheumatological condition - which she knows is not true, but seems to her to get it fittingly understood. She also seriously thinks I should get the "Invisible illness"-meme @Panda posted a while back on a T-Shirt. Not big enough, unfortunately. I'll print it out for my locker at work. I've also collected 300 further similar memes now, a lot of which are helpful. Pity posting pics here is not possible when answering (yet).
Praps we should just say something like: it's very painful, and so complicated that not even specialists understand it. the-scientist.com/reading-f...
Since most/lemon-mouthed people aren't really interested, I usually use imagery like: On the few good days it's as if you had a cold, on the bad as if you had the flu, still have to try to be active, but you can't ever sleep properly and will have it for the rest of your life. So it's Catch 22. Because everyone knows what that's like, but just to be sure you could elaborate on that.
“it's very painful, and so complicated that not even specialists understand it.” I love this definition. It is what it feels like most of the time. I think I’ll use this from now on, so thank you.
My specialist described it as ME with pain. I explain it as fatigue, with pain the jumps around my body and brain fog as those are my main symptoms that effect daily life.
Sounds about right! 👍🏻
A good explanation!
It's like wading through water up to your hips with weights on your legs, neck & shoulders trying your best not to fall over and walk in a straight line whilst dealing with pain that would floor most people and remember where the h#ll you're going, who the h#ll you're talking to and trying you're best to look like you know what you're doing 😩😩
I say it's like I need to be put on a table and be stretched like they did in the olden days has a form of tort
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