Does this look like Scleroderma ? - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

9,119 members4,453 posts

Does this look like Scleroderma ?

BlueLady6110
BlueLady6110

I was diagnosed with Raynauds & Erythromelalgia 2019 & also have MS, December my fingers swelled up like sausages really dry, sore, tight & some red dots under skin, went to GP who booked me in for ANA blood tests which i had last friday. It's not getting better when im warmer and a rash keeps coming up on my arm ive never experienced anything like this with raynauds or EM any ideas what it could be ? Thankyou

9 Replies

Short version - no. But scleroderma is a wide spectrum of symptoms and some can be quite rare. Hope the ANA test sorts out what it is. However what they test for can vary - there is a really wide range of antibodies and they may test for the most common ones, but not the rare ones. So if it comes up blank, ask what range they tested for, because you could have rare antibodies that were missed. Worth asking for a referral to a rhuematologist who specialises in autoimmune diseases anyway.

Thankyou both for replying. 282523 do the red spots on your fingers and face feel sore and itchy sometimes ? Poppy221 i hope they do also, i will ask my GP for a referral to a rheumatologist not sure if that will be possible at the moment with the lockdown. Im just so confused and in a constant battle of pain, trying to keep warm but not too warm that my EM flares up in knees feet & ears.

Hi there. I too have Raynaud’s and EM and quite a neurological/ MS-like version of Sjögren’s -although a different process underlying each autoimmune disease. My Sjögren’s was diagnosed by very positive lip biopsy and symptoms rather than bloodwork.

The only disease specific/ENA antibody I am very positive for is a rare one for Scleroderma. As Poppy221 says they usually start with the most common SSc antibodies and then, if the lab is any good, they will try the less common ones like mine.

My fingers have red spots like yours abd my face is getting more of them too now.

BlueLady6110
BlueLady6110 in reply to 282523

Thankyou both for replying. 282523 do the red spots on your fingers and face feel sore and itchy sometimes ? Poppy221 i hope they do also, i will ask my GP for a referral to a rheumatologist not sure if that will be possible at the moment with the lockdown. Im just so confused and in a constant battle of pain, trying to keep warm but not too warm that my EM flares up in knees feet & ears.

282523
282523 in reply to BlueLady6110

Yes they really do - itchy and painful - even though they are under the skin. I think this is our EM which is thought to be the cutaneous manifestation of small fibre neuropathy. I’ve found Iloprost infusions really help with the EM and Raynaud’s pain.

BlueLady6110
BlueLady6110 in reply to 282523

Interesting i didn't know this was a possibility with EM, i haven't seen anyone medically since my diagnosis back in 2019 and they didn't explain much about it to me back then also didn't mention any treatments apart from some kind of antidepressant which i tried but it didn't help & the side effects were horrendous. Do you ever get a raised rash that appears on your arm? Mine comes on very suddenly & then just disappears. I wish i could add another photo to show you what it looks like.

I find my body temperature swings quite a bit - in a warm room, in three jumpers, shivering then half an hour later, it finally catches up and I'm too hot. Moving around a bit, doing some gentle exercises can help. My new favourite possession is an electric heat pad I bought from Argos, five different heat settings, can put it behind my back and lean on it for gentle warmth - heat input is helpful.

Regarding appointments, they are continuing - the 2020 lockdown tended to bounce appointments but then there were lots of people far worse off in their health which no-one wanted and helping them get better was in itself is a burden on the health service. If necessary, you can have a COVID test two days before an appointment and then you and your household have to totally isolate until you've had your appointment. I've had several appointments over the last few months - the ones where I was just seeing a consultant didn't involve a COVID test, the one where they were taking samples did. Do make sure you get across to the GP how painful, how difficult, how simple things like lots of clothes don't help and how much it is impacting on your quality of life.

Thanks so much for all your great advice. I'll definitely check out the heated pad i do have an electric blanket but that would mean lying in bed all day 😂 it would be nice not to have to wear 2 pairs of thermal socks 2 pairs of gloves and jumpers. I can't turn my heating up either my flat has storage heaters think i need to ask my letting agents to get someone in to draft proof the windows properly. I will get onto the doctors tomorrow and see if my results are back thankyou again for your help.

The one I've got is a Dreamland Intelliheat. Only had it a few weeks, so far so very good. I like buying from Argos as the delivery can be next day and the rare times I've had to return things have been smooth. I just wanted a smallish square that I could also drape over a shoulder to relax it. I think there are larger ones, like a heated car seat, so up back and under bottom, but not investigated them.

Regarding storage heaters, if they are the old dark and pale brown Dimplex ones with the two knobs in an inset panel, then you might be eligible for a Green grant to get an upgrade though that can depend on your circumstances financially. The newer night storage heaters are supposed to be better for heat through the day. However getting any sort of grant can be really knackering work.

Take a look at the EPC and see what your flat is rated at. The rules are all quite complicated, have changed last year arla.co.uk/news/march-2020/... and may well be changing again in a year or two. The letting agent might know something about it - they may have been helping other tenants to upgrade via grants.

Better draft proofing of the windows is a really good idea. Years ago at an old house we bought a DIY secondary glazing kit in plastic and did the single glazed bathroom window - enormous difference. The other thought is a dehumidifier - sometimes the room temperature can be perfectly reasonable - 20C - but feel cold because the humidity is too high. Victorian house I lived in years ago was like that. Having a thermometer to measure the room temperature is probably worth doing. Maybe, just maybe, you could persuade the agents to buy you a dehumidifier if it is needed - but I wouldn't bet on it.

You may also like...