It's Not Just CrestMy name is Debi, I'm 53, and I've had health problems for over 40 years. I've known about the fibromyalgia for more than 20 years, and so many of my unexplained problems were blamed on it. A fluke blood test by a curious rheumatologist gave me the first autoimmune disease, lupus anticoagulant syndrome, a clotting disorder. Another series of blood tests followed, and I had 4 more autoimmune diseases to add to the diagnosis, including CREST syndrome, limited scloderma. The doctor was shocked, as was the director of the lab who ran the tests! As for me, I think shocked is an understatement. So I got on the computer and started researching. No amount of research prepared me for how fast CREST has affected my health.
I have some suggestions for anyone reading this. Ask your doctors to network for you until you find a rheumatologist who specializes in CREST; they are out there but hard to find. I also have an outstanding pain management doctor who is very empathetic as well as a therapist to help with the depression, frustration, anger, and feelings of helplessness. There is some great information on the Cleveland Clinic website. I'm not crazy, I'm not alone, and you aren't either.