Fybromyalgia?: Hi all, I've just had my Rheumy review... - NRAS

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Fybromyalgia?

PJsorefeet profile image
3 Replies

Hi all,

I've just had my Rheumy review, apart from upping my MTX to 17.5mg injections and my Enbrel, they now said I probably have fybromyalgia. (alongside the rheumatoid disease, hypo thyroid, and hyper mobility)

Does anybody have any experiences of this I'm in the dark as i thought that was one of those conditions that was mainly psychologically caused? I've been to counselling for the last 3 months for the frustration of the RD and feel much happier in myself but it hasn't touched my muscular aches and pains. They've been coming on gradually over the last 12-18 months. Just feels like I've had a heavy session at the gym and can't move properly due to the aches that lasts pretty much all day (worse in morning and evening like always)

Any info would be greatly received as an starting to get worried I'm collecting diagnosis after diagnosis and I'm only 32!

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3 Replies

Hi I am collecting these things like stamps! I was diagnosed with Fibromyalgia and sero neg RD at the beginning of last year. I am 55. Then I was diagnosed with Sjorgens, sleep apnea and GERD at the end of last year. I have had osteoarthritis and ruptured achilles for 5 years so already had mobility problems but now I just hurt all over and cant even think straight. I sometimes dont know which of my conditions is causing the worse pain and fatigue (probably all of it). I have recently had to give up work through ill health and I really miss it and my work collegues and now finances are stretched so stress levels increase which increases Fibro activity. I have joined the fibromyalgia community on here and find this really helpful as sometimes you just need to know you are not alone with this and the people on there know what you are going through. I think Fibro is very misunderstood by many people and Im always getting told I look well when I feel like a bus has hit me and then reversed back over me or they tell me its all in my head (I wish it was that simple). I find I have had to start to slow down and pace myself with everything I do. I find that if I over do things I pay for it for about a week after. It is hard as I have always been active and hate having nothing to do. I dont have the answers but hope you can find something that helps you. Gentle hugs Joolz.x

I don't have a diagnosis of Fibro but do have Hypothyroid and presently am in a lot of pain without the RA hallmarks of redness and swelling at all - what they call small fibre neuropathy as part of RA flare.

My own research has led me to the medical world's most recent findings - that many cases of Fibro are in fact down to idiopathic small fiber neuropathy. This generally doesn't show up in nerve conduction tests or lumbar puncture but in advanced cases does sometimes show up in skin biopsies of the worst affected areas.

My GP explained today that the neuropathic pain is most probably the indirect outcome of systemic inflammation relating to my RA. I therefore assume that giving it a separate name when a person has a diagnosed connective tissue disease - or several - is a bit of a red herring? I just think it's all part of the inflammatory process and therefore all part of the rheumatoid whatever name they decide to give it. I too have counselling and am ready to concede that the inflammatory process causes stress which in turn can cause pain and depression. However I'm not going let my medical team give it all different titles when I'm one person and it affects me in so many overlapping ways - and am relieved to say that so far they haven't tried - or if they have it's behind my back!

allanah profile image
allanah

There has been a lot of evidence in the last few months showing fibro as a real disease, and I feel dorry it must feel so sore for you.

Many people here have if and can advise you, there's also a Facebook fibro site as well as the HU one that might help xx

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