Lupus Support Group
Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.
Hello, I'm new to this site and was recommended to come here. I've been dealing with new health problems since early November 2015 and was diagnosed with a lupus-like undifferentiated connective tissue disease. It's really frightening for me and most of the time I feel pretty lousy mentally and physically. How did you guys cope with being diagnosed and how do you continue to cope?
When I was first diagnosed, I figured I would not live long enough to raise my children. Well, that was 10 years ago and they are grown. I was very frightened. I finally decided I could not live with that fear all the time and just let it go. I do what I can, try to live a normal life, try to eat as I should, see my Dr, take my meds, educate myself, and do my best to stay upbeat. I was able to take an early retirement but did work for 6 years with the diagnosis. I have had symptoms of this disease since I was 2 years old but had long periods where I felt well and lived a normal life. I was really blessed. But just living is really the best thing to do. I find that dwelling on it is counterproductive, but this advice is moot when you have those days where you feel like crap. Just do your best, and live!
Mary Ann
I always suggest keeping a food & health log, because sometimes you can see a connection between food and worsening symptoms. For example, I can't eat gluten, artificial sweeteners, too much sugar, etc. Also, I became very proactive about my health and figured out that I had nutrient deficiencies, which were verified by my doctor. Taking supplements has helped me a lot.
My dad also had an autoimmune disease, and his doctor told us that the changes of seasons, especially into Spring and Fall were the worst times for autoimmune patients, and the times that they tended more to flare. So this time of year is difficult for me, but going into Fall is even worse. Again, take good care of yourself, and best wishes.
My rheumatologist who was excellent retired last summer.
I found a new doctor but he doesn't seem to believe in UCTD--says it's old fashion and doesn't existd. My sister has uctd as well His approach has been to do a million expensive blood tests to try and rule out as many autoimmune diseases as he can My understanding of UCTD is that it is an overlap syndrome where you are likely to have symptoms of many autoimmune illnesses but do not fit the criteria for any given one, I am very discouraged. There are slim pickings for rheumatologists. We are being screened out because we do not have a "definitive" diagnosis> He wants us both off small doses of prednisone. and has even suggested getting surgeries vs. conservative use of steroids (i have ulcerative colitis so I cannot take an prescribed or otc anti-inflammatories. Any suggestions