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

Hi tsc, I have been also very active person in past with yoga and workouts at club daily. Now for last 4 months I’ve been put out due to all health issues and have really taken me out of commission. Having depression also has been hard. You have given me strength by your comments and wish we could sit down together and talk but, I thank you for your info again. This Mayo connect has been helpful but would also be great if we all could connect up in person. I’ll make sure I get dexa scan and hopefully soon return to my yoga practice. I will also check out Sara Meeks. Thanks again.

I guess all of this is so new that the data hasn’t really caught up yet. I suspect, in the end, that we will see analysis that says that certain doses of certain vaccines cause PMR flares. Thanks for sharing your experience

There is a lot of factors in this. It is the opposite for me. On no PMR meds and the PMR flared up, the first shot helped me a great deal and I am awaiting the second shot to see if it will get better. I didn't test positive for the C-19 at all but apparently might have had it due to me having the flare up. The PMR must have been fighting it off untill the vaccine started to work. Plus blood type( mine is 0- ) has something to do with it also. And maybe other meds/supplements that you are taking may interfere with the way all works together.

I tried to do a search within this group regarding exercising while suffering from PMR but could not find a thread. I wonder what level of exercise everyone else is doing and if I am overdoing it. I had a flare after attempting to swim using an overhead stroke. One day later my shoulders were on fire. How much, how often and what kind of exercises work for others. Thank you.

Hi zaa, Hopefully you will feel much better on the Prednisone. It gave me energy and a lift, immediately. Some of that euphoria has worn off, but I still feel much better. I went undiagnosed for a year, with lots of pain and strange symptoms that I tried to diagnose and fix myself. I thought I had fibromyalgia and that was it. I was living in a dark hole. My world was getting smaller and smaller. I could manage some minimal house cleaning and cooking, but had no energy for anything else. The rest of the time I was on the couch, watching tv, under an infrared heating pad. And I lost 12 pounds! Anorexia is one of the PMR, GCA symptoms.
I found sometimes that just connecting with others and talking, difficult during the COVID shutdown, made me feel better for a while, eased the pain. My husband has memory issues so I have to be his guide as well. It was exhausting. You will get through this. I hope you have some friends for support. I often didn't let on how bad I felt because I know people get tired of hearing it after a while and I didn't want to be a whiner. My niece is half my age, she has a great job and career ahead of her, and she's just been diagnosed with a pretty serious autoimmune disorder - so, putting this in perspective, it hasn't been so bad. we can expect things to happen to our bodies as we get older, despite our best efforts to stay fit and healthy.
By the way, the Rheumatologist also told me to take low dose aspirin everyday as there's increased risk of aortic aneurism with GCA about 10 years down the road.
I was looking at the safe Pilates handout from National Osteoporosis Foundation and many of the Pilates exercises I loved to do are unsafe for osteoporosis. Another loss, but not one that can't be overcome!
Best wishes.

Hi jcaffrey47, I walk everyday, about an hour, which I kept up even with terrible stiffness in my legs and knees, because of prior open heart surgery and the mandate to walk three miles a day, everyday, for the rest of my life. I couldn't understand how I could do so much walking and still be stiff. My brother, a doctor, said 'You have a disorder that restricts blood flow to your muscles (PMR - a form of vasculitis) - so, off course, you're still stiff.' Being on prednisone eased my pain and gave me more energy so I started a few strength training exercises lately, but am really careful not to overdo it. PMR started after an ankle injury from doing a lot of backwards walking so I'm now aware that an injury or overuse can be a trigger. Probably best to pace yourself and listen to your body. Keep active and moving, but don't push it too hard. Spread the moves out over the day vs, trying to do it all at once. And PMR attacks the shoulders - so avoid exercises that put too much stress on them, like overhead moves. I found acetaminophen helpful for pain when I have it. Avoid NSAIDs when on Prednisone. Hope that helps.

Indeed, it does. I too, walk 3 miles a day and I also had a triggering event which was when I lifted a 60 pound kayak up over my head onto a roof rack on an SUV. So, now most of my pain is in one shoulder (but also in the other and in hips). Prednisone handled the pain and I was tapering on my own schedule, down to 13 from 20 in 8 weeks when an attempt to do the swimming crawl caused all the pain to return. Three days at 17 mg took care of the pain and this am I was down to 16 mg. I also use EXS Tylenol to supplement in the middle of the night. Do you know of any articles which address this problem?

I was reading about autoimmune disorders because at one point I thought I had lupus and I remember reading that these disorders can build up gradually over time or come on after a triggering event, like a trauma. This is also a recurring theme on a tv show called "Mystery Diagnosis" for autoimmune disorders. In addition, I have a friend who has fibromyalgia and gets flare ups when she over does it. There are some videos online - Living with PMR (I think it was Australian) that talks about the need for moderated exercise.

I am impressed with the reports of keeping up with exercise, even when having a flare. I am barely able to shuffle around the apartment a few times a day. I am unstable walking. I am back on 15 mg due to a flare, and am getting some relief of pain, but the sense of weakness persists. I march in place holding a counter, and lift my legs outward, standing on one leg, always holding the counter. I have incredibly stiff ankles. Keep up the posts friends, they are really helpful.

I have been looking at this site and reading some of the stories, but I haven't seen some of the things I am interested in. I was diagnosed with PMR in April 2021. I am on prednisone, but I'm feeling really tired, have the munchies, and just not myself. I know prednisone relieves my pain, but are there other symptoms of PMR besides the pain? I haven't felt like myself in so long, it really bothers me. It feels like I aged 10 years in the 6 months it took to reach a diagnosis. Anyone else with this problem? Any suggestions?