Kathy D

Where did your skin thickening start?

27 posts in this topic

Hello again,

Kelcie's is much different, when she was 2 we noticed that when she was in the sun parts of her skin would tan, and other areas would stay white. The doctors just kept telling us it was a pigment problem.

 

Then last October we found out she had an extra bone in her right foot so her orthopedic said we needed to have it removed.

 

That is when the rash popped up, in the same area were they deaden her leg for surgery, the orthopedic thought it might be a reaction from the shot.

 

But she has nothing on her hands, only legs, back, stomach, ankles, arms, face and back of knees.

 

tjw

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My hands are puffy and tight but the real tightening is in my forearms from just above the wrists to just below the elbows. The skin is tough as leather and my forearms are visibly deformed from the restriction. It's like a really wide rubber band around the forearms.

Robin

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The underside of my hands first, soles of my feet, & my lower back, but I feel like I'm getting thick & stiff from the inside out and my entire body is worse on the right, the left side always follows suit though. My face feels tightest around the hair line, I feel my skin pull tight on my neck when I turn my head & tight at the waist when I bend or turn at the side.

 

The skin on my lower back feel thick & stiff, but under the top layer of skin & much more so on the right than the left, if I lay on my back in bed, I always have to adjust that side -- sounds weird I know. On the front side, I just feel like my skin is attached to the lowest ribs, so if I stretch my arms up or take a deep breath it pulls on my ribs.

 

A few months ago I started noticing a loss of range of motion in my shoulders, just when I go to pull shades closed or when I am washing the kitchen table with big circles, and when I shave my pits (haha) I have to make a conscious effort to lift my arm as high as I can otherwise my armpit gets cut. It took a number of times of shaving to realize that was why I was suddenly getting cut every time. lol.

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Thank you everybody for your kind responses!

 

I am sorry for the challenges so many of us are facing but honored to be among such a strong supportive group :)

 

Since I wrote the original post, I fear I may have started skin thickening. I have two flat patches just under my nostrils and a white patch between two knuckles that had gone from a dot a few weeks ago to about 1cm square now. My cuticles are pretty swollen too, some with red blood vessels just under the skin. Will bring this up with the rheumatologist during my appointment next week but hoping for input from you.

 

Also, have any of you been prescribed 200mg/day plaquenil instead of 400 mg per day? Curious about that, though I believe it has helped my severe fatigue some. I pretty much crash after 1-3 pm but I am getting SO much more done in the mornings, darling hubby is thrilled to have clean clothes and dishes again and I am slowly regaining control of my messy house!!

 

The plaquenil has not helped the sausage fingers unless they could have been worse than they are now which is possible. I slather my hands in lotion and bag balm but the red/purple coloring persists on my knuckles, and lower 1/2 of fingers and thumb.

 

 

Hugs to all and thank you for all support!

 

Take Good Care!

 

KD


Diffuse Scleroderma Diagnosed March 2009

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<<have any of you been prescribed 200mg/day plaquenil >>

 

Hi KD ,

 

My son is on 200 mg Plaquenil, once a day.

 

Take care, Everyone.

Margaret

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Mine started with my ankles swelling to the size of basketballs and then when the swelling went down the skin on the top of my feet was as tight as it could be. I also had really, really tight skin of my hands to the point I could have been an hand model. Now that I'm on the cellcept the wrinkles have come back and the top of my hands can actually be pinched together to form a fold! That wasn't possible 9 months ago.

 

Warm hugs,

 

Peggy

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Hi, Peggy.

 

Boy! My feet are so tight that I can barely rotate my ankle. If I stand on my toes to reach for something.. WOW! What pain. And my hands are also tight, so tight that I cannot make a fist. I can barely touch my thumb to my fingers.

 

How long did your feet stay tight? Was it the medicine that made the difference?

 

HONEY

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Hello.

 

My husband's thickening started on his forearms. We noticed discoloration and then hardening. This has since spread to flat oval-like hard spots on his abdomen, thick-ball-like lumps in his chest then flat hardening on his thighs and now thick-ball-like lumps up the backs of his legs.

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Hi Eos,

 

Yes, the natural course of systemic scleroderma is for the skin to tighten and then, sometimes, go back to normal, either in whole or in part. It doesn't happen to everyone, but it happens just often enough to mess up every small scale clinical trial for scleroderma. Regardless of what is being tested, most doctors and patients think we are on the verge of a cure until it gets to large phase 3 trials. When they unblind the trial to discover the test results, they are generally astounded to find that the patients who received the placebo improved just as much as those who received the medication they were testing.

 

So, there is always hope for all of us! Not everyone with systemic sclerosis develops skin tightening and sometimes it even reverses, either all by itself or along with treatments. For example, Razz' skin tightening lessened after her stem cell transplant.


Warm Hugs,

 

Shelley Ensz

Founder and President

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.

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Mine was my face and hands. Interesting, someone mentioned skin not tanning in the sun on her child. My skin on my face is really tight and during the summer, it just doesn't tan. The rest of my body will be brown and my face is pale. I use a self tanner on my face in the summer to help even out the difference.

 

Michelle

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I haven't been diagnosed with scleroderma. My rheumatologist classified it as undifferentiated connective tissue disease (UCTD) right now but lab and physical look like sclero (some things lean to lupus also, could this be overlap?).

 

I have the red spots on face, chest, arms and now they are starting to show up on my belly. I have skin thickening right below my right eye and at the corner (next to tear duct). I have had many other symptoms for years (joint pain, fatigue, unexplained weight loss, gynecological issues (premature ovarian failure, early menopause, etc.). When I had surgery (4 times) all of my scars became extremely fibrous. Any time I get even a small cut it takes forever to heal and then becomes thickened. I'm not hoping for sclero but it would be nice to know what I'm dealing with. I'm new to this website and am finding it extremely helpful. At least now I know I'm not the only one that has been searching for years for a explanation as to what's been going on (other than hearing we can't find anything physically wrong, must be in your head).

 

Thanks guys! :rolleyes:

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