Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

Thank you thank you thank you for creating this group! I feel a little less crazy knowing that I didn't just imagine there was such a thing as PMR. And I desperately need some help from the group: I can't find a doctor/nurse practitioner will even LOOK at PMR as a possibility even though I present every single symptom associated with it--and GCA. Doctors here in Tallahassee have messed me about for a year with the symptoms, mostly shuffling me off to a NP who listened, nodded, and diagnosed me with "Hm.", took my money and showed me the door. It's even to the point where I went to ER with a TIA (diagnosed after screening me for a stroke), and when I reported back to my doctor? "Hm."

My wife and I googled the list of my symptoms and PMR turned up IMMEDIATELY. When I followed the Mayo website's advice and typed out my symptoms along with the Mayo article on PMR, the nurse practitioner was livid, refused to even make eye contact with the words on the page, and proceeded to show me the door, assuring me that I needed blood tests to confirm I had "food allergies" (???)

I need help finding a way to talk to a doctor or find a doctor that has heard of this so that they'll listen to me and get this taken care of. Help!

I'm being referred to UF Shands (in-network provider), and they've already fumbled the diagnosis, now telling me thy're going to schedule me with an orthopedist for "random leg pain" (???)--who then may or may not refer me back to a rheumatologist. In the meantime, I'm dragging myself out of bed barely able to walk most days till mid-afternoon, and when I teach classes, I have to lecture using a cane. It's like I'm 61 going on 95. And every medical person I've talked to says they've never heard of PMR (and was told to "stop reading things on the internet", since clearly Mayo Clinic is "fake news" 🙂

Help!

Hello @ronhonn, Welcome to Mayo Clinic Connect. I know it can be frustrating not getting the help you need. Have you thought about getting a second opinion from a major teaching hospital or Mayo Clinic? I was diagnosed and helped by a Mayo Clinic rheumatologist who described PMR in layman's terms to me as arthritis all over the body.

Here's what Mayo Clinic has to say about PMR:
https://www.mayoclinic.org/diseases-conditions/polymyalgia-rheumatica/symptoms-causes/syc-20376539.
If you would like get a second opinion from Mayo Clinic, you can find the contact information for the Minnesota, Arizona and Florida campuses here http://mayocl.in/1mtmR63.

Hi, John. Boy, this just gets worse and worse. 'Spent the last 3 hours on the phone with my insurance and doctors, including speaking to Mayo here in Florida. I was told that I can't get a referral to Mayo because my GP has never heard of PMR and doesn't think it's a thing. I talked to Mayo, 'said I was willing to pay out of pocket and they told me I'd need a $5000 deposit. When I said I'd raise the cash to just pay out of pocket before I become permanently disabled, the they said "Oooh! Right. Yeah we can't actually take you either unless you have a referral." This. Is. Insane.

@ronhonn that is frustrating to say the least. I would encourage you to call the Office of Patient Experience at Mayo Clinic.

Office of Patient Experience
8 a.m. to 5 p.m., Monday - Friday
507-284-4988

SO HAPPY YOU HAVE A NEW GROUP. THIS IS ALL NEW TO ME AS OF LAST WEEK WHEN MY DIAGNOSIS CAME THRU. I HAD NEVER HEARD OF PMR BEFORE, THIS IS A WHOLE NEW WORLD FOR ME IN MY LATE SEVENTIES (78)!!

Hello @calicojoy, Welcome to Mayo Clinic Connect. I also had never heard of polymyalgia rheumatica (PMR) before I was diagnosed at age 64. I'm now soon to be 77 and have had 2 occurrences of what I jokingly like to call the big hurt. Has your doctor or rheumatologist started you on any treatment?

Yes !! The big PREDNISONE pills 60mg in the morning. Starting on 2/11, I feel so much better, still start my days out slow but can get going by 11am!!😎