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12 posts in this topic

Hi everyone,

I just had another thought :blink: , how many people with Limited/Crest Scleroderma have face / hand tightening.?

Also, how far along in the disease did you notice it, and was it sudden or over a period of months?.

 

Many thanks

Celia :o

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Hi Celia. I was diagnosed with limited April 2006. At that time had v mild skin thickening /hardening on fingertips and nothing that was noticeable on my face, although did look about ten years younger than my actual age, but always have done and think is genetic as my grandmother, mother and older sister all looked much younger than they were/are. About two months later started with swollen fingers /hands and now have some hardening down side of fingers, on knuckles and back of hand feeling tighter, but doesn't look too bad or affect function in any way. Also have slight skin thickening on forearms. My face started feeling tighter a few months ago and noticed that texture of the skin feeling different. Some days would feel tight and other days OK so tried to ignore it! At last visit to rheumatologist in June, they pointed out to me that the naso-labial folds down the side of my nose had diappeared (its amazing what you can ignore when you don't want to see it!) My mouth is also a bit smaller Now feeling slighty tight around the eyes and eyelids as well. It doesn't look too bad at the moment, more like a facelift, and am busy doing facial exercises to try and maintain mobility. Given that I am menopausal it is hard to know sometimes what is due to loss of oestrogen (lips tend to get thinner with age) and what is due to the dreaded SSc.

lizzie

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Diagnosed with CREST (CRST) in 1977.

 

No face tightening. Fingers a bit shortened from Raynauds ulcers, but otherwise okay (if somewhat lacking the dexterity of someone without the disease).

 

Craig

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Thanks for responding to my post everyone, it is much appreciated! :D

 

Best wishes

Celia

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Hello all,

I have limited CREST and have face and hand tightening. My mouth is OK; it is mainly my forehead and cheek area that is affected. I have have a couple of fingers with contractures and will soon have the worst one amputated at the second joint. At least that way I will have a functional stump. I am a little concerned about the healing process due to my severe Raynauds and associated vascular problems.

Has anyone had an amputation and how has it healed?

Cheers from Rosie in South Australia. :blink:

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Hello Rosie, I just wanted to welcome you to our group. I am sure somone will respone to your inquiry. I know of several people who almost have had to have amputations but were able to get therpy and there finger/fingers were saved. I hope something can be done to save you from having to have an amputation. Sheryl


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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Hello, Rosie, and welcome to the ISN Sclero Forums. Love your, avatar! I am sorry about your problems with the disease but glad you found us. I am sure you haven't come to the decision of an amputation lightly, but I have read of other solutions, including reshaping the hand surgically. One person had their hand shaped to fit a mouse, for example. There are a couple of members who have lost partial digits, so perhaps they will be answer to your healing issues. I hope you can find some useful advice on our Skeletal Involvement page. Here is one article on hand surgery.

 

Surgery of the hand in patients with systemic sclerosis: outcomes and considerations. The goals of surgery for advanced SSc affecting the hand are limited and include pain relief through sympathectomy and increased perfusion, repositioning the digit, providing a functional position of fusion, and modest mobilization through resection arthroplasty. J Rheumatol. 2005 Apr;32(4):642-8. (Also see: Sclerodactyly, Raynaud's Treatments, and Calcinosis)

 

 

Celia, good question. I haven't been diagnosed with a specific kind of scleroderma, but I do have hand and face tightening. The hands have happened slowly over a two year period and still do not show contractures. They started out as puffy and tight and hot and have gradually started to turn smooth and tight with harder skin. My index fingers are starting to twist out a bit at the tips. My face has tightened around my eyes in the past year and my mouth has the lovely radial creases.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Hi Rosie,

 

Welcome to the Sclero Forums!

 

I'm really glad you joined us but sure sorry to hear you have CREST.

 

I do also, but have not had any digits amputated yet. I know many here have though so hopefully they will chime in and give you their experience.

 

Again welcome!


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Correct me if I am wrong but I have a positive ANA and also positive anti-centromere antibodies, no skin involvement as yet only 2 slightly swollen fingers.

I have lots of internal things going on but have been diagnosed by a rheumatologist as having limited/crest scleroderma.

I also have Raynauds which I started to notice in my feet a few months ago.

 

I have read that if no skin involvement is present but everything is interna, then it would be Sine Scleroderma.

 

How long does it take a rheumatologist to change the diagnosis to limited to sine?

Would I be watched over a period of a few years before this is determined?

 

BEst wishes

Celia :)

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I've had CREST for at least 13 years and I've had no face involvement. Only skin tightening on my hands. My hands are tight and swollen most of the time but my doctor said if it hasn't affected my face yet, chances are slim.

Be well,

Samantha

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Hi, Samantha, and welcome to the ISN Sclero Forums. I am glad you found us and hope you will continue to share your experiences with this unfortunate disease. I think your doctor is probably right on the face tightening after all this time.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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