I am a retired teacher from Marysville, Washington. I am 61 but will be 62 in May of 2016. I have been happily married for 39 years, we have three children, all are healthy and doing well. We also have two grandchildren with another baby girl due in September of 2016. I consider us a normal, well adjusted and happy family. I have an occasional beer but for all intents and purposes, I really don’t drink and never smoke. I am also a pretty good guitar player and love to play, rehearse, practice and listen to good guitarists.
In late October of 2015 I simply woke up one morning with swelling in my hands, the kind of swelling you might feel after a long walk. The difference was that this did not go away. 4-5 days later I began to experience severe pain in my fingertips. I had difficulty rotating light switches and tying my shoes, etc. It made practicing the guitar nearly impossible. Sleeping became an issue as my hands kept waking me up from continuously falling asleep at night.
I assumed it was carpal tunnel syndrome and that I needed a carpal tunnel release. After the initial testing, I was told that I indeed had moderate carpal tunnel. The neurologist doing the test did say on her way out the door, that she was unsure where the swelling came from.
I had my left hand carpal tunnel release in late December. There was no relief. The symptoms of scleroderma (not yet knowing that is what I had) masked any benefit I might have received from the carpal tunnel release. I went ahead with the right hand carpal tunnel release on February 9, 2016 for two reasons: it was already scheduled, and I would probably need it later at some point in my life. The results were the same.
By now the swelling crept up my arms and, for now at least, seems to have stopped at my elbows. Sometime in late December of 2015 I began to notice the same swelling occurring in my feet and it has crawled up to the knee area. There is also a tightness surrounding my inner thighs and frontal waist. I have self-determined that this is a skin issue, not muscle or joint. It is quite painful, limiting my motion and is overly sensitive to touch.
My regular MD wanted me to see a rheumatologist and I finally got in in late February, 2016, a month later. As with so many of you, blood test results came back negative, though the obvious signs of swelling in my arms and legs made it clear that there was an issue.
The rheumatologist, at least for now, believes I have sclerodoma. I am told a skin biopsy might confirm her diagnosis but I have not had that yet. I see her again March 11, 2016. I am currently on my fifth day of taking prednisone, 20mg in the morning once a day. So far it seems to do nothing.
I know there is no cure for scleroderma. My question is what is next? Am I going to feel this pain the rest of my life? What are the treatments? I have been scouring the internet for treatments but I have as yet been unable to find anything. Is there anybody out there that has found a treatment that works for them? I am not asking for perfect healing, just enough relief to be able to do simple tasks again including playing the guitar and tying my shoes.
I see the rheumatologist again on Friday March 11, 2016. I would appreciate any advice on things I should question her about. I already know I need to be my own best advocate so I really want to be prepared. Thanks for your help.