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 I have had symptoms for some 6 months following a bad flu episode. My muscles (mainly legs) become fatigued easily and sore the day after, stiff with tendon pain (when pushed) that comes and goes around major joints too. I havent been getting deep sleep and recently some tingling in my left foot. The more symptoms I notice the worse the anxiety gets. I dont seem to have the 11 points of pain for fibro-myalgia. The Neurologist referred me to a Rheumatologist - w/negative RF test, waiting on ANA tests. I really dont know what to do next.
Answer I understand your anxiety - nothing is more frightening than knowing something is wrong but having no explanation for it. The problem is, you've just begun the search for an answer while your mind is leaping way ahead. This is perfectly understandable, but there's more you can do than just "worry."
How about focusing your concern on journaling your symptoms so that as you and your doc continue to test and explore, you can give her/him precise information on what's happening when? It may make a difference whether you're feeling pain during the day or during the night, how long the pain remains after activity, and how much or what type of activity causes it. Also, is it consistent or intermittent? Getting worse, about the same, or up and down? Do you try any medication for the pain, or non-medical treatments like heat? How does it help (or not?) Note the time of day and what activity your were doing just before. Add some descriptive info on your mental state, too, including whether or not you're feeling tired. It may make a difference if you're "very tired" in the morning or "somewhat sleepy" in the evening.
Using the computer for this is great, but you can also just jot things down during the day in a notebook, then take it with you to your next appointment so that when your doc asks, "How have you been doing?" you can give specific information. You can use this notebook for questions you may have for your doc, too. It's so easy to forget when you get into that little room and s/he takes over the questioning. Then, on the way home, you think of all those things you wanted to ask.
