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!
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.