AboutAmelia Yaussy Expertise I can answer questions about systemic scleroderma and live and internet resources to help you cope with this disease. I have personal experince with scleroderma, osteoarthritis, fibromyalgia, and Sjogren's Syndrome.
Experience I am a systemic scleroderma patient (12 years) and have been active in support online for nearly the same amount of time. I proposed the Usenet newsgroup alt.support.scleroderma and own the website ihavescleroderma.com.
Organizations I am a board member and volunteer for the Scleroderma Foundation, Ohio Chapter.
Publications Arthritis Today, Sept 1997, "A guide to the internet"
Education/Credentials International Webmasters Association, Web Technologies Certification
Awards and Honors Volunteer of the Year, Scleroderma Foundation, 2004; Advocacy Appreciation Award, Scleroderma Foundation, 2005
Question 40yr old female: my rheumatologist told me I have connective tissue disease-don't know which one yet. I am being monitored for scleroderma. I have been told by various surgeons (general/orthopedic/gastro) that I rapidly create scartissue. I had arm bone surgery 5 yrs ago & just recently developed increasing bone pain, followed by rapidly developing hard bone lump, then another lump in 3wks time (all of this occurred in total 3 months time w/NO injury to arm or previous signs of pain or lumps). I just had lumps remvd & was told they appeared to be scar tissue (waiting pathology confirmation). I don't understand why on earth I would randomly devel. scar tissue 5 yrs after surgery for No known reason. I was wondering if you know of any direct link between scler. & scar tissue devel. OR any other auto-immune type cause related to scar tissue that might help any of this scenario make sense? Thanks for any help.
Answer The only information I've heard about post-surgical scarring related to scleroderma is anecdotal and rare. Scleroderma does cause scarring or hardening for no known cause. I'm sure you and your doctor will learn more from the pathology.
It's frustrating to be diagnosed with an "undifferentiated connective tissue disease," and a lot of people with scleroderma or lupus are for a short or even long time before all the pieces of their personal puzzle come together to create a clear picture. In the meantime, keep track of your symptoms and when they occur ("tired in the morning which improves by noon," or "pain in legs that gets worse the longer I stand in the cold," for instance) to help your doc get a more complete picture. Keep working together for a diagnosis so that you can have proper treatment of symptoms and complications.
