Recently diagnosed, information please - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Recently diagnosed, information please

GreenKelly profile image
10 Replies

Hi after moaning to my GPS for more than 5 years about my hands, I've finally been diagnosed with raynards, I've never heard of it before, and so I'm looking for more information. My right hand is always swollen, red and extremely painful, my feet are always cold. I've noticed by reading through posts that's there's a lot more complications that come with it, so please what other symptoms do people have? Thanks

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GreenKelly profile image
GreenKelly
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Blue-Bunny profile image
Blue-Bunny

O.o er... don't quote me...but it sounds like you might have early onset of scleroderma. Swollen fingers aren't necessarily a symptom of Raynaud's well, not that it doesn't happen. Go see a different doc ^-^;.

Raynaud's is a condition where you react badly to cold. As wiki puts it, "Allergic to cold". Your blood rushes from your hands (usually) though it can effect feet, nose, tongue, ears...it's usually the very extremities. There's also 'usually' a colour change, white/blue/red sometimes you might not notice the pattern, sometimes it'll reverse on you, sometimes it'll be patchy and other times, your fingers and feet will just be agony while the Raynaud's decides what to do with the blood.

Of course, that's what 'usually' happens for just Raynaud's, but as I said, swollen fingers (unless after an attack where the blood is rushing back) isn't a symptom of Raynaud's to my knowledge. Any history in the family?

GreenKelly profile image
GreenKelly

Wow, I'm due back at the doctors so ill ask 4 a second opinion. Yes there's history, after being to the doctors my mum remembered my dad had it in his fingers. My brother also suffers with colour change and pain in the cold. Mine the worse and has progressively got worse since I was 16, it's the last 2 years my fingers have swollen.

Blue-Bunny profile image
Blue-Bunny

Yeah...that sounds depressingly familiar. It looks like you're a hereditary primary. Make sure your doc knows that it runs in the family. You should have been diagnosed much earlier.

GreenKelly profile image
GreenKelly

I will do, thank you!

Its only usually the specialist centres that have the knowledge unfortunately. The move to community care is in my opinion only going to make matters worse. There is a lack of knowledge of the condition and how it needs to be treated by MOST doctors. If you manage to get a good one stick with him/her.

Rp321 profile image
Rp321

I to have primary raynauds - and the fingers that get swollen and painful - sometimes a dull ache and sometimes a shooting pain. However the swelling and pain goes away when I have medication - the colour changes still happen and they get sore but no where near as bad as without medication.

I found it a learning curve at first - keeping warm and the best gloves for each activity.

Now it's completely normal and I cant imagine life without raynauds - it's just a part of me :)

Hi ! Have you checked out the raynauds and scleroderma website at raynuads.org.uk ? There is some great information and some photos ! Keep yourself warm and try to avoid the colour change ! All the best :)

GreenKelly profile image
GreenKelly

Thanks guys I'm goin to see if I can be referred to someone who knows more about it, they did mention medication so hopefully that will help.

GreenKelly profile image
GreenKelly

Thanks guys I'm goin to see if I can be referred to someone who knows more about it, they did mention medication so hopefully that will help.

GreenKelly profile image
GreenKelly

Thanks guys I'm goin to see if I can be referred to someone who knows more about it, they did mention medication so hopefully that will help.

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