Long journey to diagnosis
At age 38 I began to have all over body pain, which never relented. It was not intense, but light pain. Was diagnosed with Rheumatoid Arthritis but decided not to take the meds offered because I felt that the meds were frightening and at the time my pain was not intolerable. By the age of 43 pain was increasing as well as body stiffness. Was diagnosed with Fibromyalgia, told I did NOT have RA, and began a seemingly endless chase to find the right medication. Nothing helped, my condition worsened. I changed rheumatologist several times, as I found them to seem uninterested in helping me get better and unconvinced that something else was going on within my body, even going as far as telling me "you look great though!"... Awful! At age 48 my right knee swelled badly for reasons unknown still, and required surgery after an MRI revealed damage. Afterwards, no improvement at all. Was referred to Stanford Hospital Rheumatology by surgeon, who suspected something more complicated might be happening. Age 49 diagnosed with RA ( again!) as well as Fibromyalgia, Chronic Fatigue, tendinitis and bursitis. Began methotrexate, which helped a bit but made me feel as though I had the flu.Began Arava which helped a bit but not enough. Also started Lyrica and Celebrex. No improvement. Brilliant Doctor, Laura Tarter, suspected something else was amiss. Ordered Protein Immunofix Electrophoresis test which revealed abnormal light chain. Had loads more labs done, two skin biopsies later the hematology department met with rheumatology and dermatology to put the pieces of my puzzle together. Age 52 diagnosed with Scbnitzler Syndrome and began Anakinra. Stayed on all other meds as well, and saw almost immediate improvement. Still have pain, still have stiffness, during flares have chills, sweats, extreme pain, fatigue,, but even with all of that, it's still an improvement from where I was.
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