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Fibro Hell..

2 replies

mrsjw17 · 24/10/2020 23:55

Hello,

I was diagnosed with Fibromyalgia around 5 years ago alongside having Postural Orthostatic Tachycardia Syndrome (POTS) since the age of 15.

I have recently had a very bad chest infection which started off with symptoms of COVID (which symptoms are still persistent - cough) but after being sent to hospital & 2 negative tests later I'm still not feeling very well.

I was also tested for a blood clot on my lung as my D-Dimer level was high.
After a CT scan & a few days of self injecting blood thinners I was told I don't have a blood clot!

My fatigue has hit an all time high, daily intense migraine (worse than normal) & now seem to have bad twitchy nerves throughout my body.

I was told the doctor at hospital that the very bad chest infection I had would effect my fibromyalgia & that I would just have to learn to get used to it.

Is there any Fibro friends on here that use anything to help with their symptoms?

I was on medication but decided to come off as it wasn't helping & they wouldn't offer me anything else.

Everything is just a real struggle & I feel like a complete failure to my children for not being a fun Mummy.

Please be kind, I'm very fragile at the moment & just coming on here for some advice an support.

OP posts:
sweetkitty · 25/10/2020 00:31

Not much to add sorry, I have fibromyalgia and it’s rubbish. I’ve tried pregabalin, amatryptaline, duoxetine, gabapentin. Most of these had horrible side effects especially the first two. I now just take dihydrocodeine for my hip and back pain. Yoga and keeping moving helps a bit as when I rest I seize up but then it’s hard as I get so tired I need a lot of sleep. Catch 22. I so understand about not being the fun Mum, I’m the always sleeping Mum Sad

mrsjw17 · 25/10/2020 10:23

Don't apologise it's nice to hear from someone who knows I how feel.

I was on Duloxetine but had side effects on it & I gained weight. I become really unhappy & decided to stop taking as I didn't feel like it was helping me.

I take Zapain for pain killers but sometimes this doesn't help.

My doctors too seem a little clueless & don't know how to help?

Just finding it hard to adjust after the bad chest infection as it was a struggle before but now it's 10x worse.

Thank you for reply ♡

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