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.

@scpartain

I'm very sorry you developed this condition after your second Covid shot. I also experienced a PMR flare that began within days after my first Covid vaccination. It was my second bout with PMR after a thirteen-year remission. My symptoms were very similar to yours, with pain throughout my body. The carpal tunnel-like pain caused neurological symptoms in both hands. I saw a rheumatologist who prescribed prednisone, which relieved the symptoms. I am thankfully back in remission and no longer need prednisone. I hope you will find treatment and relief soon.

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Thank you for this. I have felt so isolated in this. It is as if I can't make anyone understand the pain that it's causing. My hope is that prednisone will work. I'm so glad you're back in remission. I found this web site while looking for some mild exercises I could do to keep somewhat mobile. All the best to you.

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@sbharlan

Hi all - Just wanting to wish y'all a Happy New Year and hoping remission comes to each of you! I was diagnosed with PMR the year I turned 70 - I am about to turn 77 so obviously I am a long hauler - hoping that you will find the lowest dose of prednisone where you can be comfortable and that your doctor will understand that is the goal.

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Happy New Year. I will be 72 in March and this was not in my "big scheme of things". Take care.

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@ncgal

Hang in there. I've had PMR for 2 years now, and was diagnosed initially with a CRP of 46 which gave the rheumatologist proof of PMR. Are you not on Prednisone yet?

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Noooo. My fam doc only referred me when my CRP was 33.6. I told him I was scared by this and finally he referred me. Had neurologist phone call appt. and we did some blood work on the 21st. Then he went away for the holiday. Hopefully next week I will be able to start some prednisone. It's been almost 5 months with this pain, but unfortunately nobody would actually listen to what I was telling them. Family doc, ER docs 2X. I felt totally unheard, until this doctor called me and said it sounds like PMR. I'm like "thank you" finally. Someone hears me.

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@scpartain

I'm very sorry you developed this condition after your second Covid shot. I also experienced a PMR flare that began within days after my first Covid vaccination. It was my second bout with PMR after a thirteen-year remission. My symptoms were very similar to yours, with pain throughout my body. The carpal tunnel-like pain caused neurological symptoms in both hands. I saw a rheumatologist who prescribed prednisone, which relieved the symptoms. I am thankfully back in remission and no longer need prednisone. I hope you will find treatment and relief soon.

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Did your hands swell? My PMR came out of remission as well but my hands flare and look like little sausages. Primary thinks a duel diagnosis of PMR and either rheumatic or psoriatic arthritis as an underlying due to hands. That would be a new diagnosis for me.

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@doreend721

Did your hands swell? My PMR came out of remission as well but my hands flare and look like little sausages. Primary thinks a duel diagnosis of PMR and either rheumatic or psoriatic arthritis as an underlying due to hands. That would be a new diagnosis for me.

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There was some swelling but it was mostly numbness and tingling, which resolved as the PMR receded. I hope you're feeling better soon.

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@milld835

Noooo. My fam doc only referred me when my CRP was 33.6. I told him I was scared by this and finally he referred me. Had neurologist phone call appt. and we did some blood work on the 21st. Then he went away for the holiday. Hopefully next week I will be able to start some prednisone. It's been almost 5 months with this pain, but unfortunately nobody would actually listen to what I was telling them. Family doc, ER docs 2X. I felt totally unheard, until this doctor called me and said it sounds like PMR. I'm like "thank you" finally. Someone hears me.

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I went through something very similar to you. It took 4 months to diagnose my PMR and a GP who said I was just anemic, my radiologist ( from breast cancer ) who referred me to my oncologist who referred me to a neurologist who was the one who diagnosed PMR, Luckily he was in the same medical complex as the rheumatologist so I got in straight away. He put me on Prednisone immediately and by the next morning I was pain free. I guess not many doctors are familiar with PMR, but it seems that there is a kick off point that starts it, either a vaccination or, as i my case, a strong antibiotic after a colonoscopy. I do wish you luck in your diagnosis - 'though I wouldn't wish PMR on anyone.

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@milld835

Thank you for this. I have felt so isolated in this. It is as if I can't make anyone understand the pain that it's causing. My hope is that prednisone will work. I'm so glad you're back in remission. I found this web site while looking for some mild exercises I could do to keep somewhat mobile. All the best to you.

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Exercise and movement, as painful as it is, definitely helps. The pain gets worse from sitting or lying down and typically improves with movement during the day. It's hard even for those close to you to understand the pain and frustration you're going through because the symptoms are not so obvious to an observer. I have read that it's sometimes referred to as the invisible disease. I hope you find some relief soon, as I know from experience that the symptoms are almost unbearable.

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@scpartain

Exercise and movement, as painful as it is, definitely helps. The pain gets worse from sitting or lying down and typically improves with movement during the day. It's hard even for those close to you to understand the pain and frustration you're going through because the symptoms are not so obvious to an observer. I have read that it's sometimes referred to as the invisible disease. I hope you find some relief soon, as I know from experience that the symptoms are almost unbearable.

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I def try to keep active, but sometimes the exhaustion is overwhelming. Then I rest. Mornings are something I can't describe, or waking thru the night. Getting up to use the washroom and not quite making it because you can't get outta bed fast enough. I know, I'm not telling you anything you don't already know. Right now I'm sitting with the heating pad on my neck and shoulders. By mid afternoon, I should be improved.

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@ncgal

I went through something very similar to you. It took 4 months to diagnose my PMR and a GP who said I was just anemic, my radiologist ( from breast cancer ) who referred me to my oncologist who referred me to a neurologist who was the one who diagnosed PMR, Luckily he was in the same medical complex as the rheumatologist so I got in straight away. He put me on Prednisone immediately and by the next morning I was pain free. I guess not many doctors are familiar with PMR, but it seems that there is a kick off point that starts it, either a vaccination or, as i my case, a strong antibiotic after a colonoscopy. I do wish you luck in your diagnosis - 'though I wouldn't wish PMR on anyone.

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Yes both rheumatolgist and neurologist are in the same complex, so what the neurologist can't do, he will refer me to the other if necessary. This does not run in my family, so the only thing I can attribute it to is my last Covid vax which was 10 days prior. Thanks for your encouragement.

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@milld835

Yes both rheumatolgist and neurologist are in the same complex, so what the neurologist can't do, he will refer me to the other if necessary. This does not run in my family, so the only thing I can attribute it to is my last Covid vax which was 10 days prior. Thanks for your encouragement.

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My PMR (I had never heard of it!) started 14 days after 2nd Moderna last FEB! It was overnight it happened. I didn't get diagnosed til mid July 2021 so almost 5 months later. Those were awful months.

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