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Fibromyalgia Action UK

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Fibromyalgia

Poppy7583 profile image
7 Replies

Hi I used to think fibromyalgia was something drs couldn’t find the answer to pain .

My sleeping pattern is all over the place I’m constantly trying to find a cool spot in the bed for my legs ,shoulders arms you name it .

I never thought I’d result to joining a community about fibromyalgia but I’m interested in how others cope .

I don’t like taking medication I try to cope without it and believe me it’s hard .

I go online play scrabble then I get this tingling numbness in my hands I find when I touch metal my hands really hurt does anybody else experience this.I need some cheery jokes I reckon so the pain wobbles to another part of me lol

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Poppy7583 profile image
Poppy7583
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7 Replies
fenbadger profile image
fenbadger

Why does the hen stare across the field?

fenbadger profile image
fenbadger

because chicken sees a saladI'll get me coat

fenbadger profile image
fenbadger

I dont suppose it's any comfort to know you're not alone. I couldnt get by without medication now. Pacing is important even though it doesnt solve the whole thing. Are you up for TENS machines and the like? Het pads can be great but I dont know why. It's not like the old "Deep Heat" cure which is merely chemical and does not work for me. It's like a pepper/chilli. No real heat but it fires off the same receptors - to no effect. My best is to realise when I need to rest - not rest but a "tactical withdrawal", then get into my recliner with a heated underblanket and heated throw. They're not expensive to run and can be a positive help to the heating bill in winter. If too much heat is an issue, then maybe a cool bath or fan, but again not a complete treatment, simply an easing of symptoms. I wonder if you're describing RSI when playing scrabble?

Good luck in your search

Yassytina profile image
YassytinaFMA UK Volunteer

Hello and welcome, you will certainly pick up helpful advice and a few tips along the way. I agree with Fenbadger pacing method threw each day is how I handle my fibro, and there’s also days where I really have too do the essentials and pull back with more rest, I play scrabble with someone that is very good so that’s always a challenge. I rarely miss my evening bath with Epsom salts having a soak does help as when I miss a bath the next day I noticed my aches are worse . Some people here have tried a weighted blanket for sleeping. Now the weather has warmed up I keep my fan on as it blocks out other noises and I find it helps me go off too sleep , not sure why but it does and also keeps me cool as I tend too over heat , fibro temperature I call it when everyone has their coats @jumpers on I’m in a T-shirt 😩

Cotswolds25121 profile image
Cotswolds25121 in reply to Yassytina

Ditto on the overheating 🥵 x

Colourpink66 profile image
Colourpink66

Hi Poppy 7583 this is the first time I’ve replied to a post so Hi to fellow sufferers, I use cool pillow pads for my feet and legs they go everywhere with me , also I have leg wraps that have like ice poles that slot inside then hold around your legs with Velcro, I find these work for me, a good sense of humour definitely helps 😂 good luck 👍

Piddlysmam profile image
Piddlysmam

Hi Poppy, I do struggle with leg pain, restless legs and I like a cold bed. However, after asking on here for advice, I have tried using my weighted blanket again. I didn't get on with it when I bought it 2 years ago but I've been using it for the last 3-4 months now and I have to say it helped with the pain, the rls and sleep.

Give it a try, you never know. Good luck. 😊

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