Polymyalgia Rheumatica (PMR): Meet others & Share Your Story
Welcome to the Polymyalgia Rheumatica (PMR) group on Mayo Clinic Connect.
Meet other members who are dealing with PMR. Let’s learn from each other and share stories about living well with PMR, coping with the challenges and offering tips.We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Grab a cup of coffee or beverage of choice and let’s chat. Why not start by introducing yourself? What's your experience with PMR? How are you doing today?
Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.
Hi Fam,
I did not gain weight taking prednisone as some have reported. I attributed that to my relatively strict diet and really trying to limit salt and sugar. Walking every day and yoga are also in my routine.
Hi John. Glad to hear you’re doing well. I’m new at this. I was just diagnosed with PMR and haven’t started the prednisone yet.
In regard to lifestyle changes I already eat a pretty healthy diet but will make adjustments as necessary. I was doing stretches and easy yoga before the pain started about 5 months ago. Due to the pain and stiffness I haven’t been able to exercise much at all now. I’m hoping with the medication that the pain will subside and I can begin to exercise again. I can see I’ve lost muscle and want to build that back up again.
Thanks so much for responding to me.
Sounds like you have a healthy life style Liz.
I try to maintain one as well. That’s why this condition threw me for a loop. I just hope I’m able to tolerate the prednisone and get relief from pain and stiffness so I can get back to my exercises.
You will be fine. I was amazed at how quickly the PMR pain went away when I was on the right dose of prednisone. You too sound like you are healthy so I am hoping that you will find relief soon. This forum has been very helpful because, in the beginning, no one I knew had ever heard of PMR. I wasn’t looking for sympathy but just someone to understand what I was going through. Fortunately my husband got it. He was a lifesaver, lifting me out of bed for several days when the pain was at its peak.
Hi @fam8284, I understand your reluctance to take Prednisone, but most people who suffer from PMR experience a dramatic relief from symptoms after taking it. 5 mg sounds like a low dose - I think the usual for PMR is 15 -10 mg.
I had PMR, then GCA for a year, undiagnosed, so no prednisone, just constant pain and other strange symptoms. Was diagnosed with GCA after a temporal artery biopsy and put on 40 mg, with tapering down every two weeks. I was on it a year and a half, and have been off prednisone now for nearly a year.
My mother-in-law had GCA as well and didn't want to take the prednisone, but was told she could go blind or have a stroke if she didn't. She took the Prednisone and was cured of GCA eventually with no flareups,. She lived to be nearly 100.
I hope our stories help you make a decision.
Hi Teri. Your story and your mother in laws are encouraging. Thanks so much for reaching out and sharing your experience.
I appreciate your input.
Thanks Liz for your kindness and encouragement
Joan, I had the same awful reflux for about six months last year, before PMR and prednisolone. Almost every night I woke with terrible burning acid reflux and had to go back to half-sleep propped up with three pillows. I thought it would never go away.
The thing that resolved the reflux for me was going onto a strict low carbohydrate diet with no eating or snacking after 7pm. It really was an instant resolution of the GERD for me, and a huge relief to have it go away so immediately. Just mentioning it to you in case a dietary change may work for you too, instead of relying on more drugs which can cause other problems.
I also have diabetes,
gastritis and arthritis. Never mind my eye issues for this communication. The prednisone made my diabetes and my gastritis worse. Not to mention the insomnia! My PCP worked closely with me and adjusted my meds to deal with ^ symptoms. I’ve made some lifestyle changes, but more are needed. I also had Accupuncture. Since my PMR, I have both knees and one shoulder replaced-with 1 more shoulder to go. I’m on the joint a year plan. 1 knee in 2021, and another in 2022. I had my shoulder replaced 5 weeks ago, and I’ll have the other shoulder replaced 8-24. My joint replacements have been easy compared to PMR! I have regained so much function; I’m thrilled!
I’m not as active as I should be, but I also have Small Fiber Neuropathy which significantly limits the time I have each day on my feet and legs. I do plan on going back to my Pilates next fall once my other shoulder is replaced and heals. I’m 71, and am planning on a dozen or so good years once my next shoulder replacement settles in.
You guys hang in there. Keep working with receptive health care professionals. One thing I have found helpful is to put my symptoms in writing with bullet points, and a few numbered succinct questions. I try to keep my writing to a page and a half. Finally ask open ended questions, to avoid simple yes or no answers to complex questions.
Good luck to all of you.
Hi, I just bought a new bed where the head and feet adjust up and down, because I was way overdue for a new mattress, so I have that part covered. I also saw the GERD diet online last night (since I hardly ever sleep I now have too much time on my hands, but I'm not complaining. Better than laying in bed racked in pain). Just as you mentioned, it also talked about a low carb diet and provided a list of high fiber, low fat foods, highlighting to stay away from alcohol, fried foods, caffeine, etc. I probably should have started this sooner, but I just couldn't stopping focusing on how lousy I felt.
Thank you so much for the info. You brought up a lot of great points, and I really don't want to have to take any more meds than I have to. Thanks again for your help.