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Skin Hardening

Skin score progression

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#1 miocean

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Posted 14 September 2012 - 07:05 AM

I am wondering what other of you have experienced in the progression of skin hardening and softening.

For me, one of the first symptoms of scleroderma was my skin becoming tight, hard, and sensitive. This began in February 2004 and I was not diagnosed until August so I do not know what I started out with. The first skin score I remember was 45. My doctor tests my skin by pinching areas of my body and then uses the Rodnan Skin Score. I found this on a search from a post of mine from 2010:

It was February of 2004 when I started having symptoms of scleroderma. I would wake up in the middle of the night with my arms and hands tingling and in pain. My hands became very sensitive to touch. My skin hardened quickly. It started with my arms and legs but spread to my back and my chest. I was stiff and found it hard to move. I was diagnosed in August and went to my scleroderma specialist in September. She used the Rodman scale to test my skin and the score was 45. My skin started softening about a year and a half ago which I think was a natural progression of the disease as I wasn't on any medication that would cause it. In March of this year my skin score was a 16. I am a little more flexible although I still find it difficult to get in certain positions. You can pinch my arms a little bit. People tell me I have more expression to my face.


I recently posted:

I do remember what I felt like with a skin score of 45. I was so hard and stiff I could barely move. I could hardly open my mouth or smile. I could not bend down or get down on the floor yet alone get up. I couldn't bend my hands, I couldn't hold a pen, my writing was barely legible. I had trouble typing. I had to stop wearing my contact lenses because I, couldn't pull my corner of my eye to pop them out (gas permeable lenses.) I had to take baths only because I had a venous catheter for dialysis but couldn't lower myself into the tub so I would cross my legs as far as I could and then plop down. But hey, I had no wrinkles and tight thighs for the first and only time in my life! :emoticons-yes:


I remember how terrible it was to have such tight skin. After thinking about it I remembered I couldn't even get socks on and was given a "sock helper" at the hospital to help pull them on. Getting jeans on was difficult and pantyhose a nightmare, had to give them up. At times my husband had to help me get dressed. I had to get a higher chair to sit on at the beach because I couldn't get up from the low ones. I had to get out of the tub by turning over on my hands and knees by crawling up. I was hard all over, including my trunk. I also remember that clothes hurt my skin, just the touching of certain fabrics was uncomfortable. My dentist had difficulty getting in my mouth. Friends tell me now that when they hugged me and felt how hard I was they cried later.

But it IS a natural progression of the disease for the skin to soften. For me it started at about 6 years in as you can see from my first post quoted. Then after the transplant it kept on dropping. Depending on the day I am between a 0 and a 5 as sometimes I have some tightness around my ankles.

Do you know what your score is and have you been keeping track of it? Have you experienced softening over time? Does your skin harden again after this progression?

Please share what you have experienced.

Thanks,
miocean
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#2 Joelf

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Posted 14 September 2012 - 10:04 AM

Hi Miocean,

Firstly, it's great that your skin score has improved so much; it must have been agonising when your skin was so tight and uncomfortable.

Actually, I have very little skin involvement; merely the tips of my fingers which are a little tight and shiny, but although one of my favourite consultants used to periodically pinch the skin between my top and second finger joint to see if there was any thickening, we concluded (thankfully!! :glare: ) that was the extent of my skin involvement at that time and the Royal Free Hospital mentioned a skin score of 2.

Although I do suffer with painful joints, it has nothing to do with any hardening of my skin.......so far, so good, for the present!! ;)

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#3 amberjolie

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Posted 15 September 2012 - 08:16 AM

I don't think I was given a score for my skin hardening at all, or at least not that I was told about.

How long from when your skin first tightened to when it softened? I was just talking to my husband about this yesterday, that some people's skin softens again, and he was wondering how long it would be before that might happen (although I had also heard that some people's skin just thins instead). Also, does this occur for both localized and diffuse, or just diffuse? I have localized, but I recall reading that it was the diffuse kind that can soften.

#4 Joelf

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Posted 15 September 2012 - 08:56 AM

Hi Amberjolie,

I think that softening does happen in Limited as well as Diffuse Scleroderma and from the description of Limited as opposed to Diffuse from our medical pages, one of the primary distinctions is the extensiveness of skin hardening; tightening with skin involvement typically being limited to the hands (maybe forearms) and face in Limited and all over the body in Diffuse. Another primary distinction is that the skin involvement in Diffuse comes on quickly.......over weeks or months whereas in Limited it comes on gradually (perhaps years). (I assume you're referring to Limited Scleroderma in your post rather than Localised, which refers to Morphea and Linear Scleroderma.)

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#5 marsha

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Posted 15 September 2012 - 09:57 AM

I have been keeping track of my skin tightening. I started a year ago april at a +1 and then this July I was a +9. My hands and ankles are so stiff I can barely move them. I have been told this can wax and wane, I am still waiting for the waning part!

#6 Amanda Thorpe

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Posted 15 September 2012 - 02:13 PM

Hello All

As the skin can harden it can also soften in both limited and diffuse scleroderma, the systemic forms of the disease. Regarding localised scleroderma... "The most common type of morphea is a simple plaque-type, which affects only the skin and not the underlying tissues. It typically begins fading within about 3-5 years after onset, even without any treatment at all."

I had tight skin covering my entire arms, legs, hands, feet and patches on my trunk, shoulders, abdomen and back. Five years on I still have tight skin covering my hands and forearms, meaning limited movement in my wrists and sclerodactyly, tight skin covering my feet and calves, meaning no movement in my ankles. Last time I saw the rheumatologist I asked about the possibility of regaining my arms and legs and he said that it was unlikely that there would now be anymore improvement. I also have active morphea patches all over my thighs and calves, didn't know you could get morphea over tight skin but obviously you can.

Take care.
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#7 amberjolie

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Posted 15 September 2012 - 06:36 PM

Hi Joelf,

Oops, yes I meant limited scleroderma! :blush:

What confuses me about my skin involvment is that it is quite widespread - hands, forearms, upper arms, chest, even abdomen, face, (not on legs or feet) however my rheumatologist says she still thinks I have limited, because of the face and mouth involvement. Apparently the face isn't usually involved in diffuse, from what she said.

In terms of how fast it came on, I would say from the moment I first noticed blotches on my forearms to now would be about 2 years. So I'm thinking maybe a year and a half for it to really have come on fully. So I guess that's on the slow side of skin thickening.

#8 Joelf

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Posted 16 September 2012 - 08:40 AM

Hi Miocean and Amberjolie,

I've found a very interesting thread on skin thickening here which I hope you'll find informative.

Kind regards,

Jo Frowde
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