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

Heat also helps. Some people on this site have mentioned that an infrared heating pad is helpful. I still use a regular heating pad and a heated mattress pad at night.

Yes. Swollen like sausages and feel like frost bit. Stiff and sore and freeze in position thru the night. Wear splints to help with the numbness.

It's terrible that you have not been getting the attention and treatment that you need. And that now that they know what it is you aren't getting the prednisone. Don't wait one minute longer than you have to. Get that prednisone going! If in fact PMR is the correct diagnosis, that prednisone will seem like a miracle to you! And it's about time!! If the prednisone doesn't work for you, then the doctors will need to keep looking.

Yes, I think mine came from either the Moderna or the Fluzone65. But I don't think we'll ever know.

I had never heard of it either. It started overnight but I totally think it's related to the vax. Even more, I think it possibly started after the first vax as my neck bothered me all summer, so much that I bought 4 new pillows, one $149 to relieve my neck. My first vax was May 4. These are awful months of waiting. I had googled my symptoms and FINALLY asked my fam doc to do blood work for RA. I even asked for blood work at the ER. That's when they found out my CRP levels were way too high. So now I wait for the neurologist to get back from Christmas vacation. I hope you're doing better now. I hope I will be doing better after I start Prednisone (if).

Yes I agree. This neurologist is new to me and we've only spoken on the phone due to Covid. He has great reviews and I feel confident he will get to the bottom of it. We just needed to do more blood work to rule out Lyme disease, because I had been bitten around the same time and the bite lasted for about 3 weeks. Waiting for the New Year's miracle. Now I have the blood results and the clinic is closed til the 4th or 5th. Missed out on a Christmas vacation myself because the pain would not permit. For the most part, I've stopped crying with the pain, but sometimes I'd like to pound on something but my hands are too sore. 🙂

Your story brought to light a similar path to trying to understand what was going on with my muscles in the earliest days of PMR before I knew what it was or that I had it. The pillow buying!!! OMG, it was my neck and back of head that were so uncomfortable. I too bought a 4149 pillow!!! And my blankets were impossible to pull up around me in the night...my shoulders hurt so much...I kept thinking, I need a very light puff blanket so I can maneuver it at night! Turning over was horrible and repositioning the blankets (not that heavy) was impossible. So, EARLY CLUES. Just good to share with others. Thanks for the pillow reminder!!! OMG

...and the pillows never worked and I'm stll trying to find the right one. Actually made one of my own with chipped memory foam. It's not too high and it's not too firm and seems to be the best so far. The blankets. When my hips worked I could kick them off with my legs. Now...I don't even know how I get out of bed. I do know getting rolled up in the sheets is not fun. I have a light, but warm comforter and that works and I started sleeping in the nude so I didn't get hitched up. Also getting up to pee in the night and getting a nightgown up in time is just nuts! Yes early clues, but I did not put 2+2 together at that time.

This is so helpful even retrospectively! I think I could help undiagnosed struggling folks maybe earlier than say my 4.5 months from Moderna 2 to pillows Nd blankets AND rest trying to make it to keep middle of night!!!! Thanks

I am considering whether or not to get the 2nd Covid shot. I got the first shot last February. Within a couple of days I was in misery. It took until April to figure out it was PMR so I was going on and off of prednisone and in and out of pain during that time. I talked with the rheumatologist about getting the second shot. He said I can when I am below 5 mg per day of prednisone and if it got the PMR increasing I can increase the prednisone 1 mg/week. I'm not sure what I'd like to do - take the second shot or just continue sequestering. What do we know about the effect of taking the vaccine on PMR? Does it cause a flare up? If so, how bad is the flare up? Are there any research data on this topic? I'm suspecting we're such a small percentage of the population that there hasn't been much research done.