I had muscle pains in both arms when I raised my arms. Now I know that bilateral pain is one of the markers. No doctor suspected PMR until my current primary dr in a new city. He did a blood test but it was normal. Still, he said I could see a rheumatologist if I wanted to, so I did, and by then, a month later, the markers were high.

Can you go back to the doctor (I believe you mentioned a rheumatologist diagnosed you with fibromyalgia) and ask specifically about PMR, or had you done that already when they diagnosed you the first time? Like the others have said, it’s possible to still have it (along with a bunch of other autoimmune conditions) without positive lab tests, but it might make sense to check again.

A PCP can diagnose PMR too, if that’s what it is and if it’s hard to get in with a rheumatologist. Last option I can think of is getting a second opinion…but it can take a long time for a rheumatologist whereas we were told (by my aunt who if an internist, but she lives in another state) PMR should be addressed quickly, both because of the extreme pain and fatigue it can cause, but also because of the high incidence of GCA—which can cause blindness or risk of stroke if not treated early enough.

I have a different inflammatory arthritis and I ultimately saw four rheumatologists, mostly because my care team and I just couldn’t decide what to do and which was the right diagnosis. And it ended up being the Mayo rheumatologist who was wrong, which is part of what caused the confusion. So it can be difficult.

I hope you get some answers soon. (Also, so sorry, I totally mean to reply to the other posts/questions you asked me, but I’ve been really swamped! I have not forgotten.)