I was diagnosed with sarcoidosis in October, 2014. I had no idea I had it until I went to the ER for a car accident and they did a chest x-ray. That's when they found the hilar and medistinal lymphadenopathy, which turned out to be sarcoidosis by biopsy.
This past year has been the worst for me. Almost a year ago exactly I began complaining of severe fatigue (to the point I was sleeping 18 hrs a day). I saw my PCP multiple times and after the labs she did were normal, she said it was depression. I've dealt with depression since I was 17 (I'm 52) and I kept telling her it wasn't depression but because she had no other explanation for it, she didn't believe me.
Then I began having severe SOB and joint pain. I've been treated with 60mg of prednisone daily for about 6 months causing me to gain about 40 lbs and to develop diabetes. I'm also on methotrexate and have gotten Remicade infusions. I just found out today that I may have a myopathy, possibly related to the steroids or sarcoidosis. This month I transferred my care to Temple Lung Center and their sarcoidosis program.
I'm frustrated because my quality of life has really deteriorated--fatigue, pain and SOB--rule my life right now. I really want to meet others who have sarcoidosis and understand the trials and tribulations of this disease. I've reached out on Facebook to find others but have had no luck. I try to educate myself as much as possible and read everything I find. My goal is to get my symptoms under control and be able to be active socially again.
