My initial symptoms of PMR mostly involved my shoulders. I couldn't lift my arms to do anything myself. Someone could lift my arms for me and it wouldn't hurt so much. It started in one arm first because I would carry my bad arm with my good arm. The asymmetry was only for a day or two and it wasn't too long before I couldn't lift either arm.

It took time to be diagnosed with PMR. I had a 20 year history of reactive arthritis so the first assumption was that my shoulder pain was a flare of reactive arthritis even though I never had shoulder pain before this time.

My ophthalmologist prescribed a massive amount of prednisone for every flare of uveitis which is "associated" with reactive arthritis. The problem was --- I would "self medicate" with leftover prednisone prescribed for uveitis anytime I had the pain caused by reactive arthritis. This went on for 20 years until I was 52 years old. I never had a primary care doctor let alone a rheumatologist. I was a nurse so I took care of myself. I listed my ophthalmologist as my primary care doctor.

When PMR set in, my wife called her primary care doctor because she didn't want to help me get dressed anymore and things weren't getting any better. My wife's primary care doctor thought I was an idiot and referred me to a rheumatologist.

A comedy of errors ensued because reactive arthritis isn't treated with prednisone. I was begging any doctor who would listen for prednisone. I was praying for uveitis to happen so my ophthalmogist would prescribe prednisone.

Eventually a couple of rheumatologists agreed that I had PMR in addition to reactive arthritis and uveitis.

A primary care doctor apologized to me after PMR was diagnosed. He said when he first saw me, he thought I was a "crazy person" who wanted prednisone. After my first visit he decided I wasn't crazy ... and he thought it was PMR then but he was listening to my rheumatologist. The rheumatologists were telling him to limit prednisone.

It took a few more months before the rheumatologists to come to the same conclusion about having PMR. I couldn't believe it either. I asked what happened to reactive arthritis. My rheumatologist said it was still there except now I had PMR too.