Any difficulty in diagnosis of PMR?

Pain in neck,shldrs, hips, low back, & one painful knee. As you’ve probably read on here, symptoms can vary a lot. I suggested PMR to my PCP & got shot down. She did at least refer me to a rheumatologist who diagnosed me. Prednisone is the only thing that relieved my symptoms. What a relief to discover this. It just treats symptoms though where methotrexate is what my rheumatologist calls a ‘disease modifier’ but isn’t tolerated by everyone.

Several questions....Did you ever have the PMR symptoms of limited movement in the morning, such as trouble getting out of bed or raising your arms above your head? Was your pain consistent throughout the day? Did your Dr do any blood work to check for inflammation? Thanks.

The year that your PMR was undiagnosed, did your muscle stiffness prevent you from raising your arms in the mornings or cause difficulty getting out of bed? I have muscle pain but not stiffness that causes limits to movements. Did any Dr diagnose you with Fibro? I will have to re-visit my Dr I guess.

I only had difficulty getting prednisone even though that was what I specifically requested for my pain. I saw the same ophthalmologist for many years for recurrent flares of uveitis associated with inflammatory arthritis. My ophthalmologist prescribed massive amounts of prednisone for uveitis and I always had plenty to spare.

I listed my ophthalmologist as my primary care doctor. I just didn't bother with a primary care doctor or a rheumatologist. Whenever I saw another doctor about pain, ibuprofen or a narcotic was prescribed. Prednisone worked a whole lot better than ibuprofen and narcotics.

One day I decided to throw away all my extra prednisone. I was feeling okay and I randomly decided that I wouldn't need prednisone anymore. I thought if I needed more prednisone, I could get more when uveitis flared up again. That was when my symptoms of PMR started to set in and a flare of uveitis didn't happen.

My wife made me see her primary care doctor. My wife was telling her doctor everything because she didn't like that I self medicated with prednisone. The doctor agreed with my wife and wouldn't prescribe any prednisone to me. She referred me to a rheumatologist instead.

My first rheumatologist wasn't much better. I was lectured about taking prednisone for "every little pain." Clearly, that rheumatologist didn't have a clue and the "little pain" comment still bothers me. Fortunately, I found my own primary care doctor who reluctantly prescribed prednisone until things were sorted out.

It wasn't until a second rheumatologist conferred with my first rheumatologist that things got sorted out. I don't know what all happened behind the scenes but the suggestion was that I return for a followup visit when I wasn't taking prednisone. I managed to hold the prednisone that was being supplied to me by my primary care doctor and returned for my rheumatology follow-up visit. That's when PMR was diagnosed in addition to inflammatory arthritis.

The next time I saw my primary care doctor and told him about the PMR diagnoses but he wasn't too surprised. He said when he first saw me, he suspected PMR.

It’s sad that the system is like this, but I feel like a lesson I’ve learned is to keep asking and looking for providers until I find the one(s) who listen, believe, and support. Those careless/dismissive side remarks people make like “every little pain,” reallllly stick. I definitely have some quotes like that, that stick out: “Just try not to think about it for a while,” etc.

That, and we have to keep advocating for ourselves. Even if I have blind spots and biases too and some of the time don’t know what the heck my body is trying to tell me, I know my body best (or so my PT and my best doctors are always trying to remind me >_

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.)

I went to a new DO dr yesterday with bad muscle pain because my PC Dr was booked up for 4 days. Told her I've been in pain for 6 weeks and asked for blood work for inflammation, Lymes, etc. I had the tests done last year and they were negative. She refused to run the tests again because she said I was diagnosed with fibromyalgia last year so there was no point in repeating blood work. She finally agreed to do SED rate and C Reactive Protein tests, which came back normal. So it looks like I don't have PMR. She told me to go back to my PC Dr for treatment for fibro. I'm going to a pain clinic in two weeks and hoping they can help me.

You can have PMR with normal CRP and SED rate tests.

"Polymyalgia rheumatica can still be a very surprising disease: the diagnosis is possible even if normal values of both ESR and CRP are present."
--- Polymyalgia rheumatica with normal values of both erythrocyte sedimentation rate and C-reactive protein concentration at the time of diagnosis: a four-point guidance: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5911650/