can any one help: Hi all , can any body... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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can any one help

lynbw profile image
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Hi all , can any body tell me if they have fiber myopathy , i was refer d to a neurological Dr and this is what he said i have . i also suffer with limited scleroderma and sojgrens plus fibromyalga thankyou lyn

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lynbw
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suzierwp330 profile image
suzierwp330

hi sorry to hear that whats fiber myopathy ?what symtoms do you have ?

lynbw profile image
lynbw

Hi suzie , although the doctor was really good , i am still not a lot wiser . it seems to affect my feet really badly they get very red very painful i cant walk any distance . he has asked my GP to provide wraps for my feet during the night . my rheumatoid Dr sent me to him , my blood pres-her is different lying down to standing up. i have the shakes all the time but! he said this is due to the medication i take , in fairness he is sending my GP , rheumy , and myself letters explaining what it is . . thank you for your reply best wishes lyn

Crystalcindy profile image
Crystalcindy

Aw bless you. Yes, I certainly suffer from Rheumatoid, Sjogren's syndrome, Raynards as well as IBS, fibromyalgia and then the genetic markings for Primary Biliary Cirrhosis. Its not a nice combination and being in touch with my rheumatologist, pains clinic and physiotherapy, it is certainly helping me. I hope you get all the help you can and please let us know how you go. Take care and god bless you.

love Cindy xxxxxxxxxxx

lynbw profile image
lynbw in reply to Crystalcindy

Hi Cindy , thank you for you'r reply ,i wont know any more information until i see my GP. my heart goes out to you with all that you suffer .it isn't easy is it , i also worry a lot about my daughter she has a lot of the symptoms i have, she is only in her thirty's she also has a rheumatologist in a diffierant hospital .i don't know when they are going to stop telling me i have more things wrong with me when you have scleroderma the list seems endless . thank you once again i will let you know how things go , it helps when you know you are not on your own . best wishes to you love and god bless you lyn

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