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
Expert: Amelia Yaussy Date: 9/10/2006 Subject: other possibilities????
Question Bit of background, I'm 29 yr. old female. Have huge level of anxiety and obessive complusive disorder. Anyway, over a year ago I noticed when it was winter time that sometimes my fingers would turn white and be numb so I would have to run my hands under cold water and they would turn back red and be tingly. Also, certain toes would feel numb as well but they returned back to normal once I got inside. It seemed to only happen when I would go get the mail at the post office when I was at work and when I was wearing mid heel boots. I didn't think to much about, just thought it was related to the cold temperatures. It was very sporiadic. I do type all day at work too, don't know if that makes a difference or not. I have also noticed that sometimes when I grip something really hard, it can trigger it too but I can just pop my fingers or move my wrist in circular motions and it goes back to normal. Have no tingly or numbness on ears, cheeks, tongue. Well yesterday I was looking on the internet and I came across Raynaud's disease, I can deal with that. But after looking some more I came across Sclerodema and I am freakin out! I have no symptoms of Sclerodema, no thickening of the skin or curling on my fingers, no puffiness, no trouble making a fist, no calicum deposit under skin,no red spots, no heartburn, nothing that they describe. My questions are: Since its been a little over a year since this started what are my chances of having this deadly Sclerodema? Can one have only Raynaud's symptom and still have Sclerodema? Should one exhibit the tightening of the skin, curling, etc... first and then Raynaud's when having Sclerodema? Should I consult my doctor right away, we just changed insurance and waiting on that to take effect? Also forgot to included that I'm not sure if I even have Raynaud's since I haven't really had the problem since this past winter and I haven't been to my doctor. Also, related to my feet, after thinking about it, when I wear boots and walk alot thats when my toes and sometimes the heel on my feet feel numb but once I get off my feet the numbness goes away. Is there any other possibilites other than Raynaud's or Sclreoderma? I haven't had any espisodes since last winter. Also with my feet I remember that even the heels (especially when I was wearing boots) of my feet would feel numb but would go back to normal after getting off my feet. Could it have something to do with nerves or anxiety? Do I have a great chance of having Scleroderma without having any other symptoms after a year now? To have Scleroderma does Raynaud's have to occur in either both hands or both feet? I have read numerous wed sites that have stated that to have Scleroderma, Raynaud's shows as being in either both hands or both feet. To have primary Raynaud's meant having in both hands and both feet at same time. I have also read that Scleroderma, Raynaud's shows as having hand and feet on one side only. Honestly, I can't remember if it was in both hands and feet at same time or both hands and one foot, etc... I guess I would just like to know what other possibilites there might be other than Scleroderma. I can deal with it if it just primary Raynaud's. Please help clairify (mispelled?) and if there might be any other possibilities. I'm so terrified!!!!!!!!!!!!!!!!!!!!!!!!
Answer Scleroderma is not a fatal disease. It can be life-threatening in some people, but the vast majority of us have to learn to live for a long time with the symptoms and complications.
"Overall survival from scleroderma has improved from 50% at 7 years to 80% or more at 10 years." http://www.scleroderma.org/medical/r&t_articles/Korn_2004_2.shtm
Systemic scleroderma is still a rare disease. The often-quoted "300,000" with scleroderma in the US includes systemic and localized, a form that's restricted to skin involvement and no vascular or organ damage.
Raynauds.org estimates as much as 5-10% of the population has Raynaud's. All scleroderma is only about .1% of the population, so you can assume that many, many more people have either primary Raynaud's or Raynaud's secondary to a disease other than scleroderma. Raynaud's occurs in 97% of people with systemic scleroderma, but also about 40% or less of people with lupus or rheumatoid arthritis. Even those directly related to someone with scleroderma only have a slightly increased chance of having it themselves.
Deal with what you have right now, and make an appt with your doc to talk about the color changes and numbness in your fingers and toes. Because you describe white fingers when gripping something, talk to her/him about your job or other activities where you grip or use vibrating tools. http://www.osha.gov/SLTC/etools/woodworking/assembly_vibration.html
Limited systemic scleroderma can have a long interval between the first Raynaud's attacks and skin changes, but the treatment for now would be the same as for primary Raynaud's, your only symptom, since there is no treatment for scleroderma.
If you smoke, stop. Smoking increases Raynaud's attacks, and besides, it's just not worth what it does you your health overall.
