So now i'm confused: So I had nail fold... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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So now i'm confused

san61 profile image
5 Replies

So I had nail fold capilliary and thermology,and yes I have systemic sclerosis. It was good to finally get a diagnosis. But now,over the past month or so,I have developed arash on my face thats increasingly resembling a certain winged insect,and I have a tender/painful sternum and achy muscly bits that surround it. So... do I have a combo of SSc,Lupus and Fibromyalgia????? Starting to feel a tad fed up. But that will pass, its just frustrating that I dont really truely know what I have!

Hope you all had a good Xmas and have a great start to 2015 Xx

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san61
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5 Replies
Jensue profile image
Jensue

I have SSc but was first diagnosed with Fibromyalgia but then my consultant ignored the FM because he said that the aches pains etc he felt where to do with the SSc. But a diagnosis of autoimmune issues can take a very long time - it probably took me about 2 years before getting a definitive diagnosis!

judyt profile image
judyt in reply toJensue

I have Systemic Sclerosis,Primary Biliary Cirrhosis, Sjogren's Syndrome and on top of all that Rheumatic Heart Disease. I have frequently been tested for Lupus but so far that is OK.

zenabb profile image
zenabb

I suggest that you see your GP.

san61 profile image
san61

Thanks for the replies. judyt, fingers crossed that Lupus will not surface,you have enough to contend with!

Jensue,yes its taken about 2 years for me to get the Ssc diagnosis,I was told it wasnt lupus last year,but next time I go to the rheumatologist I will ask if I can maybe have more tests. I know they can all cross over each other,and can have bits of each. I have Raynauds too,but the Nifedipine seems to keep that at bay mostly.

zenabb,I have made an appointment with the GP for the rash and tenderness. Its likely to be that vascular thing (excuse my ignorance). Best wishes for New Year all x

RieDe profile image
RieDe

Hi, I can relate. Over 18 months now and I have a semi diagnosis of a connective tissue disease possibly related to lupus, possibly scleroderma & secondary fibromyalgia. It all started with a sudden onset of raynauds. My rheum is amazing, the problem being my bloods are still inconclusive. The majority of my symptoms are related to scleroderma, I had a review yesterday and they are convinced this is what I have but I also have a malar rash and extensive joint/muscle pain. I am 31 and basically in the early stages of something. I have meds that are helping and a care plan for 6monthly & annual tests to identify progression & also incase my bloods actually give a definite diagnosis. As everyone will agree this is a long process. I wish you well! Connective tissue things are soooo frustrating, you are not alone :)))) I'm feeling proactive this year, I'm feeling better on meds and have joined the scleroderma society. I will take this bloody thing on & won't let it define me!! Happy new year, wishing you health, happiness & positivity!xxx

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