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Problems with Sclerodactyly.

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#1 Patty


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Posted 30 July 2007 - 01:32 AM

When I was at my Dr 2 weeks ago, besides her telling me I had Fibromyalgia, she also kept looking at my hands, fingers mostly and kept showing them to the intern. she would try to pinch the skin and kept saying what sounded like sclero-dack-til (that's how it sounded to me)

Anyway I just looked it up and this is what I came up with. I showed the picture to my friend and she said, that my hands do look like that just not as bad! I know my fingers are not as straight as they used to be but I have limited so this can't happen to me can it?

Another question is how do they treat this. All she wants to do is re-up my prednisone but I won't take more then I am on now because I want off. I swear, I got sicker after she started to treat me.

Thanks for any info on this.


If Life hands you lemons, make lemonade.

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

#2 nan


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Posted 30 July 2007 - 05:01 AM



I have CREST/limited scleroderma and Sclerodactyly is the S in CREST. So the way I understand it is you can have it when you have limited. I hope that helps you.



#3 janey


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Posted 30 July 2007 - 03:24 PM



Like you, I saw a picture of sclerodactyly and saw my hands. It was before I was diagnosed so it really helped with my diagnosis. We have a section on sclerodactyly that you might want to peruse. It is a possible symptom of systemic scleroderma, which includes limited.

I immediately started hand and finger exercises several times a day.
Pulling each finger straight by starting at the knuckle and moving toward the tip.
Pressing the hand as flat on a table top as possible.
Making a fist, then straightening
Playing the piano and typing.

I didn't let the soreness or weakness stop me and today I have "almost" straight fingers. You might ask your doctor for a couple of Physical therapist sessions. The main thing is to use them, use them, and use them.

Janey Willis
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International Scleroderma Network (ISN)

#4 Elehos


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Posted 31 July 2007 - 02:14 AM

Hi Patty,

Others have mentioned Cellcept (and I think Plaquenil too) for skin issues, but since I don't take any of the "sclero meds" at this point, someone else might be able to fill you in more on meds.

The skin on my hands has been getting tighter on the back and on the fingertips, and thicker on the palms, but I don't have the typical curling you see in pictures either. The fingers aren't as straight anymore, and I can't make a fist with either hand anymore, but the only thing I'm doing at the moment is stretching like mad to keep them from getting worse. At one point they were beginning to curve terribly, and it took about 3 weeks of constant stretching, sometimes feeling like the skin and tendons would break, but my hands did begin to improve. My knuckles began to hurt like mad for several weeks afterwards, but eventually settled down, and I would prefer that to unusable hands! I'm sorry that you're having the problems with your hands too.

Hugs and best wishes to you,


#5 Shelley Ensz

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Posted 31 July 2007 - 05:53 AM

Hi Patty,

There's a common perception that limited systemic sclerosis means that you don't get skin involvement; and some people think it means you can't get internal organ involvement. See: Limited Scleroderma.

However, the only thing really "limited" about limited systemic sclerosis is that the skin involvement (if any) is limited to the hands and/or feet and/or face.

If the skin involvement is more widespread (anywhere else on the body) it is then called diffuse systemic sclerosis. Either version can affect any of the internal organs, or occur without any skin involvement, although pulmonary hypertension is the greatest risk with limited, if I recall correctly.

Although Limited is often referred to as the "milder" version of systemic sclerosis, there is nothing truly "mild" about any form of systemic sclerosis, if you ask me. It's a bit like saying the rain isn't coming down as fast or furious, but if even a gentle rain doesn't relent, you can end up with a flood.

When my hands began to be affected, I started occupational therapy right away. It was the best thing I ever did! It is so natural to avoid using our hands when they are swollen and ache so bad and turn white or blue at every opportunity, but that is when it is most important to keep stretching and exercising them. In physical therapy, I learned how to do that properly (by warming up my hands before stretching them, and using a therabath).

They also made splints for my fingers which were twisting this way and that, and splints for carpal tunnel/ulnar drift, and splints to wear at night in case the tightening progressed quickly, in which case my hands would freeze in the most usable condition (because the splints would prevent them from contracting any further.)

Today my hands look pretty normal and I have good use of all my fingers. It seems to me that those who tackled the inflammation and the stretching immediately with medical advice and physical therapy for hands (or even vigorous and well planned self-care) have more positive outcomes regarding sclerodactyly, perhaps avoiding or at least delaying worse problems with it.

And some people, despite their very best efforts, are stuck with progression of it, anyway. Although there's no telling what the course will take, at the first sign of hand involvement, it is a good idea to be proactive about it, because it is extremely hard (perhaps impossible) to reverse it once the skin hardening has wreaked its damage without intervention.

Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#6 Sweet


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Posted 31 July 2007 - 01:57 PM

Hi Patty,

Sorry to hear you are having problems with this. I have CREST which is considered limited to some doctors and I do have the beginnings of Sclerodactyly. Many many rheumatologist's also believe that limited can at any point turn into diffuse sclero. I don't tell you any of this to scare you, but I think knowledge is power and helps us to deal with all of this better.
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)