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sue1956

Severe tightening of hands

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Hi.

 

I am looking to see if anyone has advice or experience with my current condition of my hands.

 

I was diagnosed with scleroderma in 2013. Over the first year or two my forearms became very tight. This has now eased somewhat, however my hands have become progressively tight with numerous bumps appearing.

 

It has now become quite unbearable. At my last consultation with a consultant he suspected the lumps may be an infection, however four months later there is no change.

 

Around a month ago I purchased a wax paraffin bath but I've not really found it to have any affect.

 

The skin on the back of my hands are so tight and I cannot close my hands at all. I've tried hand exercises and am waiting on occupational therapy.

 

Has anyone else had this and if so is it permanent or will it pass?

 

Any help or advice would be greatly appreciated.

 

Thanks,

Sue.

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Hi Sue,

 

Welcome to these forums!

 

I'm sorry to hear that you're suffering with arm and hand problems.

 

Coincidentally, we have another thread running on hands and fingers and I've included a link to our medical page on Hand and Joint Involvement, which I hope you'll find helpful and informative. Thankfully, although my fingers were very swollen in the beginning, I've never developed Sclerodactyly and the skin involvement on my hands is minimal, merely the tips of my fingers. Once I started taking my medication, the swelling on my hands went right down, although they are very stiff at times, mainly due to osteoarthritis.

 

I would suggest that you go back to your consultant (we do recommend that you consult a Scleroderma Specialist) and explain about the discomfort you're experiencing and see whether he/she can suggest any medication to help with the symptoms.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Many thanks for replying.

 

Do you know if the swollen hands goes away after a while or goes through phases? I've now bought easy grip cutlery to help with eating and use the wax treatments, but would like to know if it's something that will subside after a while.

 

Thanks,

Sue.

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Hi Sue,

 

In my case, the swollen fingers only went down after I started taking medication; I spent an absolute fortune getting all my rings made larger, only to have to resize them again after the swelling reduced.

 

Please note I have no medical training, apart from a now out of date first aid certificate, but my concern would be that scleroderma does not usually cause bumps to appear, so it would be worth a visit to your consultant to check that the swelling you're experiencing does actually relate to scleroderma and doesn't have any other cause.

 

Sometimes the fact that we have a scleroderma diagnosis can muddy the water somewhat, as it's very easy to put every ailment down to the disease and assume that any other symptoms always relate to it, whereas it could be caused by something totally different.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hello Sue

 

I have sclerodactyly in fact if you watch the site video about it you'll see my hands. Oddly enough it was harder to get anything done when they were ram rod straight which they were before they bent over. The swelling came first then the straight phase then the curling.

 

Could the lumps be calcinosis?

 

I did the wax bath for months, thee to four times a week for around a year and guess what, sclerodactyly.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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I have a question about tight hands and curling fingers - Is it always caused by tight skin or can it be caused by tightening/calcification of the ligaments or tendons?

 

If the latter, I heard that there is an operation to help with this from somebody I was talking to, but no help if its due to skin tightening though.

 

When my Raynaud's gets really bad, I find that my fingers and my toes curl, but this passes when the attack subsides (usually in bed at night - I wake up in the morning feeling a bit better, but then as soon as I get out of bed and stand up, I can immediately feel the sensation of blood running out of my feet and legs - hands OK though at this point).

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Hi Dimarzio,

 

Hand and joint involvement in scleroderma includes the fingers, knuckles, wrists, knees, and other joints. Hand involvement includes sclerodactyly, joint contractures, inflammation and carpal tunnel syndrome. Sclerodactyly is a tapering deformity of the bones of the fingers, defined by tight, stretched, wax like, hardened skin on the fingers and hands, causing the fingers to curl inwards, frozen in a clawed position, the sclerodactyly hallmark. Underlying soft tissues can atrophy and depending on severity, sclerodactyly can cause disability.

 

In scleroderma, sclerodactyly onsets with puffiness (swelling, edema) of the fingers or toes, and only rarely advances to the clawed condition described above. Amanda's video ably describes the look and symptoms and I've included a link for you to our page on Sclerodactyly Treatments, which do include surgery.


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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