I have almost constant severe pain with few breaks. In my 20th year. There were breaks with my flares inc. the pain in the beginning. Rheumotology meds didn't work. I have needed opiates all this time but with tolerance not a long term solution. I've also been unable to find a rheumie who supports my diagnosis of sernegative SLE since I moved to AZ. Diagnosed by 6 drs at Stanford. Starting the search again after a break. Difficult as closest are 2+ hours away. My new pain doctor is taking me off all meds as I don't have a rheumie. Not supportive as my last one was even though I cut the meds by 1/4. Scared as intolerable. Tried baths, creams, natural remedies, cold..don't know what to do.
Pain has been my major problem too. I started on Benlysta infusions and I am having good results with pain control. It is for Lupus pts on all the meds who still suffer with musculoskeletal pain. It is new. You absolutely must find a Rheumatologist. How about the universities?
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