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Scleroderma & Raynaud's UK (SRUK)

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Anyone suffer with fibromyalgia ? I have CREST do these have a link ?

AliW profile image
AliW
6 Replies

I am struggling with what I suspect is fybromyalgia - is there a cure - treatment ? is there an auto immune link ? Many thanks

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AliW profile image
AliW
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zenabb profile image
zenabb

I have CREST, though thisis now called Limited Systemic Sclerosis. I don't have fybromyalgia but others do and I think that there is a relation. There is treatment that alliviate the symptoms of Limited Systemic Sclerosis but no cure. The Raynaud's and Scleroderma Association is trying hard to raise funds for research. They have funded a lot of what there is as far as research is concerned but much more needs to be learned about our condition. Do you see a rheumatologist?

AliW profile image
AliW in reply to zenabb

Hi Yes I do have a great rheumatologist - I just seem to be suffering in my neck & back - spasm of pain

I have my echo cardiogram on Wednesday see if they can shed any light on things

thanks for your response

AliW

AliW profile image
AliW

Hi Yes I do have a great rheumatologist - I just seem to be suffering in my neck & back - spasm of pain :(

I have my echo cardiogram on Wednesday see if thye can shed any light on things

thanks for your response

AliW

Maggs3petts profile image
Maggs3petts

I have Raynauds, Scleroderma, Fibromyalgia, Arthritis, PBC, I think Zenabb is right that ther is a link between R+S and Fibromyalgia. I'm on a cocktail of pain killers, Arcoxia 90, Co-Codamol 30/500's and Tramadol. Also, Pizotifen - another slow release pain killer for migraines and sumitriptan (also for migraines). I'm on two anti-depressions and I think this helps not only with depression but also as muscle relaxants. I seem to get bad attacks of FM and the pain across the top of my shoulders is just unbearble. But when I'm really bad I heat a towel on the radiator and wrap it around my shoulders and that helps a lot. I've also used heat pads and they help a lot too. But you should speak to your rheumatologist before you use them as you would before taking /using anything above the meds you're already on. Not sure if any of this helps, all the best, Mags (:-)

ScottishQuine profile image
ScottishQuine

No cure is found for fibro ive had it for 20 years along with raynaulds . There is support groups out there if you have time to attend them . I find there is no support groups for younger people . The two groups i attended was people 60 + . and only being 30 myself i found them unhelpfull

AliW profile image
AliW

Oh gosh that is awful no support groups for youger poeple ... where are you based > ?? surely there is a need for this / ?

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