Systematic sclerosis: Hi Please can... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Systematic sclerosis

Straightface profile image
11 Replies

Hi

Please can someone help me

I think I may have SS

Last week I had an episode when my fingers went blue after being in the cold. I have been very stressed over a long period and thought this was the cause. However I stupidly looked on internet and it said it was probablySS.

This frightened me. I have no other symptoms I am an older person and thought it started early

Just wondered if anyone knows if it is likely to be the start of SS. Can it start late on in life.

Thank you

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Straightface profile image
Straightface
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11 Replies
Poppy221 profile image
Poppy221

1. Fingers going blue is called Reynaud's syndrome. Some people with Reynauds have ss, or other autoimmune. Most don't.

2. Keep a diary of what triggers it so far as you can tell and how long it lasts and whether it affects your feet too

3. Talk to your GP.

Yes you can get SS in later life. It is more common in women than men. But go at this one step at a time - it may be only Reynauds.

Straightface profile image
Straightface in reply to Poppy221

Hi poppy

Thank you for your reply. I hope it’s only reynauds. My toes are ok and I can’t see any swelling or hardness anywhere

I thought if it was SS I would have other symptoms. My only worry is that I don’t think I’ve had symptoms of Reynauds before or I’ve not noticed it.

Have you known of anyone that’s had reynauds start later in life and there not got SS.

Kind regards

Poppy221 profile image
Poppy221 in reply to Straightface

Here is what the NHS has to say on Reynauds - it's common - nhs.uk/conditions/raynauds/

I don't know anyone else with Reynauds or SS except on here so can't answer your question directly.

I took my Reynauds to the GP and one of the things he did was send off for blood tests for autoimmune.

Straightface profile image
Straightface in reply to Poppy221

Hi poppy

Thank you so much for your reply. It is very kind of you to go to the trouble for me. The information has helped me

Many thanks

in reply to Straightface

Hi ive Raynauds it can be Primary or Secondary.

Mine would be secondary as have Fibro yet Quack said Ho must be Primary!

there is a bit of a different trigger/effect between them.

It isn't just hands and feet as one ignorant Quack Squawked(Also wanted to argue with specialists in there chosen field)

As was told by Ann from the RSA foundation it can effect any part of the body!.

It is to do with blood/Circulation which is everything we are Just like Trucks on the road delivering everything our blood does same.

If i get a chill it hits me in the back/lungs even with 10 coats on still feel it and if don't do something i can get ill get flu like thing.

There is/was? a lady on here if get's an attack get the start of a Heart attack type episode.

You can still get issues without them turning blue which is the second stage as turning white is the first like bits of chicken left too long in freezer!.

With feet don't always notice as covered and ive had mine go purple'y/blue before when got wet socks off yet didn't feel any different.

Cayenne Pepper and Ginger in your food helps as warms the blood up.

Winter time Peacock handwarmers are great 60+'c in your pockets.

There are things to be mindful of like low/slow BP and diabetes which are bad for hands and feet!

Poppy221 profile image
Poppy221 in reply to

Would just comment that I have the various stomach and bowel symptoms that come with scleroderma, and I find ginger and cayenne pepper would give me inflammation in my stomach and bowel trouble for at least a day - so use with caution if you have acid reflux and the like.

MissusTee profile image
MissusTee

One episode of raynauds doesn’t really mean that you have scleroderma, in fact it’s extremely unlikely.

marie5454 profile image
marie5454

Personally, I have Raynauds but not SS, however, it's best to get blood tests done so it can be eliminated. Don't worry too much and always look on NHS sites for information or ask GP.

Keep an eye on any other symptoms and generally keep warm, eat well and stay positive, loads of excellent information on this site too! Stay safe x

Sanmateogirl107 profile image
Sanmateogirl107

RAYNAUD'S SYNDROME

Sanmateogirl107 profile image
Sanmateogirl107

RAYNAUD'S SYNDROME

elprof57 profile image
elprof57

In order to know if you have scleroderma you must take an anti-nuclear antibody (ANA ) blood test in order to know if you have an autoimmune disorder. All the best.

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