6 replies to this topic

[julieb]

Julie here .

I have been reading different articles about this and feel I have got off light except for the embarassing large fingers and tough looking skin on my hands.

[Amanda Thorpe]

Hello Julie

Well I don't think anyone with systemic scleroderma gets off lightly, it is a chronic, incurable, unpredictable disease that can leave you alone for many years and then sometimes pounce or not but you never know whether it will or not. Even the localised types that never impact on life expectancy can have a huge impact on life quality because they can cause disfigurement and disability.

I have a friend with limited systemic scleroderma who has greatly improved after treatment for lung fibrosis and sometimes feels as though she isn't a real, bona fide sclerodermain because she is doing so well but of course she is. It's just as important to hear her story as it is to hear yours.

I hope you continue to have as few symptoms as possible and take care.

[Joelf]

Hi Julie,

Welcome to these forums and congratulations on dealing with Scleroderma for 10 years!

I have a friend with limited systemic scleroderma who has greatly improved after treatment for lung fibrosis and sometimes feels as though she isn't a real, bona fide sclerodermain because she is doing so well but of course she is. It's just as important to hear her story as it is to hear yours.

It's me!!

Amanda's absolutely right; Scleroderma affects people in so many different ways! Some, like me, do get internal involvement (lungs) but in my case I was very lucky that it was caught early and my treatment was successful. Others, sadly, are not so fortunate and have very bad, ongoing, life changing problems with the disease.

Even the swollen fingers in your case are very unpleasant; I had that and although my fingers have reduced in size to how they were when I was first diagnosed, they're still quite tight and my joints are painful, especially my wrists.

I do hope that this unusual disease doesn't progress any further for you and that you don't develop any more serious symptoms.

Kind regards,

[debonair susie]

Hi Julie,

So glad that you posted! We're all like snowflakes and all so different with the presentations of our symptoms!
It's truly interesting (to me) to hear about how each of us progress with our symptoms, or lack thereof.

I was 30-ish when Raynauds began (with me); Stupidly, I was clearing the frost off of the windshield of my car (no gloves nor mittens on my hands) and using a credit card, not even a scraper! Getting my fingers frostbitten seemed to be the beginning... If only I could turn back the clock!
From then, to now, the circulation problems have increased, particulary this past winter. As a result, my rheumatologist has taken me off of one blood pressure medication (because I was already taking the maxiumum dose and it was clearly no longer of benefit) and put me on a different BP medication that seem to be working well.

My fingers also are like sausages, but I also happen to have Psoriatic Arthritis, so I've given up on ever having lovely slender fingers and fingernails, which I DID have "once upon a time"! I will honestly say that it really doesn't bother me (anymore)...I'm just grateful I have use of my fingers/hands as I do! Over time, I have had to improvise/adapt however.

I'm of like mind with Jo, whereas I'm hopeful you continue as you are, presenting no more symptoms than what you now have.
My very best to you on that front!

[Robyn Sims]

Hi Julie,

Good to have you with us and welcome to our forum Julie!

I certainly agree with all the other posts. It's great that you can
appreciate your half full glass.

[stillriding]

I just wanted to say, thanks for this post.

I have the fat little sausages for fingers and winter is hard for them too.

But they're mine and they still work, so I'm pretty happy about that.

[Amanda Thorpe]

Hello Stillriding

"But they're mine and they still work, so I'm pretty happy about that" made me laugh! Talk about appreciating things you didn't before!

Take care.