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Fibromyalgia support thread?

(11 Posts)
limon Fri 28-Apr-17 18:40:05

I can't find one.

Gp and I are pretty sure I have it and I'm awaiting a specialist assessment.

Currently overwhelmed by sensory overload sad

Cagliostro Fri 28-Apr-17 18:49:25

Hi!

I was diagnosed last year (on top of existing diagnoses of chronic fatigue and postural tachycardia) and it's pretty miserable isn't it?

Sympathies on the sensory overload as well 💐 I am autistic so am no stranger to it, and it really just physically HURTS doesn't it, bright lights, loud noises etc, most people don't get it.

I'm trying to celebrate my achievements - today I managed walking somewhere that normally I get a bus/taxi to or just avoid altogether. Only 15mins or so but it felt like a huge step as I used to be able to do that all the time before I got ill. Even my kids were proud as they recognised that it's something I can't do (which is sad in itself really, they're only 7/9)

So I'm feeling happy about that and hoping I can manage it more often. OTOH I spent too long sitting outside with my friends today and being cold has totally messed me up and now I ache like hell sad I really tense up when I'm cold (and I certainly feel the cold more easily nowadays) and the extra strain on my muscles has an impact for days. Sigh!

💐

limon Fri 28-Apr-17 19:10:24

All of that rings so many bells. I had a great morning today - first day this week i havent ached - but after a full week at work and a husband clanging cutlery etc around in the kitchen I've had to cme to bed to get away from it all.

I have to get up shortly to get dd ready for bed but I think I'll turn in at the same time as her a I am exhausted

Cagliostro Fri 28-Apr-17 20:03:55

Glad you had a good morning at least smile getting sleep sounds like a good plan though!
I'm off for a hot bath as I still feel cold

limon Fri 28-Apr-17 20:53:30

Hope it helps

MyVisionsComeFromSoup Sat 29-Apr-17 09:02:02

I was diagnosed a couple of months ago, but I've been unwell for about seven years sad. Everything that could be tested , has been tested, and it seems like I'm left with "don't know what it is, lets call is fibro". I also have balance problems after labyrinthitis last year, so it's difficult to tell what is that and what is the fibro.

Snap to the sensory overload - shopping centres, supermarkets at the weekend, DH scraping his knife on his plate, banging and clattering emptying the dishwasher, tinny music on phones, and weirdly, sports broadcasts on the radio, there's something about having to filter out background crowd noise that makes it impossible to concentrate on anything else.

Thankfully I'm working very part time mostly from home, and the one day I'm in an office, it's very very quiet. So I do get peace and quiet which is nice smile.

Badders123 Sat 29-Apr-17 17:59:45

I was dx 5 years ago
I am now under investigation for OA too sad
It's hard some days
Today I've been to see mum, done some housework and been to a badminton tournament for ds1
I'm now in bed watching iplayer

NavyandWhite Sat 29-Apr-17 18:17:00

It's so good to read about others with sensory overload! It's awful isn't it? I can just about function when nobody is home and the tv and radio is off. I wonder why this happens with fibro?

limon Sat 29-Apr-17 18:58:40

I'm definitely having a flare up but haven't had chance to take it easy today as dd had a friend over then a friend of mine visited. Might have a bath this evening and chill out. My lie in tomorrow thank goodness.

limon Tue 16-May-17 18:34:07

I saw Prof Choy yesterday - has a fibromyalgia specialist and he's confirmed I have Fibromyalgia and chronic fatigue. Got a management plan and will be having some mess changed. Gutted that it is fibromyalgia but feel I have been given some very good advice

limon Tue 16-May-17 18:35:10

Ffs
He's a specialist and having meds changed

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