Hi, my name is Valerie and I was just recently diagnosed with Sweets Syndrome. I was diagnosed with Type 1 Insulin Dependent Diabetes out of nowhere in January 2013. I started getting horrible lesions on my abdomen in late June. We thought at first it was some kind of infection or reaction to my insulin shots. I went to doctor after doctor while I got worse and worse until finally in November, I was referred to a Dermatologist who finally diagnosed Sweets Syndrome. I am currently on Prednisone, Cyclosporine and SSKI, but I have yet to EVER have a lesion completely heal. The most horrible thing for me currently is the fatigue that I am experiencing. I work full time (45-50 hours a week) and am trying to get my degree. Fatigue will hit me about 1 or 2 pm and I am just totaled for the rest of the day! The prednisone helps (before it, the fatigue would hit about 11am). I am also having a very hard time with the changes in my body image, weight gain and appearance change from all the steriods. I just got married in September and I hate that my new husband married one girl.....and now only a few months later has a completely different one!
I am very encouraged that I found these resources today. I really felt like I was so alone facing this disease. It has been so helpful reading the other posts. I feel more hopeful than I have for a long time.