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.

@gcap

I have PMR and was diagnosed after getting shingles. Within 9 months it had gone away while I was on methylprednisolone. I went off medication and it stayed away. Sept 2020 I got the shingles vaccine "Shingrix" which is the same family of MRna shots as the COVID shot. Within 24 hours the pain came back full force. My doctor told me it was the vaccine and not to take the COVID one as I would probably end up in the hospital. I have not and will not partake in the "vaccine". I am now 10 month of pain, and can no longer take either prednisone or methyprednisolone as the side effects are worse than the pain. I am no working with nutrition and de-stressing my life. I know that alcohol, sugar, and processed foods tend to make the pain worse. So I am going to try anti-inflammatory foods, limit my carbohydrates to whole foods, and be very careful of what protein I eat. I also take Vit D, B12, magnesium, calcium, calm & Clear (chinese herbal formula), melatonin, fish oil, and a few other supplements. I am hoping this will take and lessen the pain to where I am able to sleep through the night and function better during the day.

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Hi GCAP, PMR is an autoimmune disorder and there are warnings on all products that contain melatonin not to take if you have an autoimmune disorder. There were some previous posts about this you may want to check out.

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@wings651

I was just diagnosed two weeks ago and now on 20mg Prednisone daily. I had been suffering for over a year though so I was about at the end of my rope. A little background... I've been in pain management for 11 years due to severe spine issues (DDD & Stenosis) so when I woke up one morning and my left shoulder hurt, I just thought I had slept on it wrong. The problem was it never went away. The shoulder pain would get so bad it would interfere with me dressing myself and showering. Fast forward to 2021 and around February or so I started to get joint pain in my wrists and hands, right shoulder, hips, and knees. My pain management provider referred me to a Rheumatologist which I finally saw in June. He ordered blood work and my ESR was over 100 (I'm not sure what that means, just know it's high). He diagnosed me with PMR and ordered additional blood work which I will be having done next week. All this is pretty overwhelming for me because I'm only 56 and my PM doctor first suspected RA but the Rheumatologist doesn't think that is what this is. The follow blood test will have the CRP added to it. I will say, this is the most painful thing I've ever had to deal with and I probably would have tried to see someone sooner but I think the fact that I was already on pain medication and I have a fairly high tolerance to pain, made it seem not that serious. It wasn't until I couldn't walk that I started getting a little frightened. Thanks for reading.

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Yes, PMR is like nothing else I ever experienced. It was akin to donning an astronaut suit of pain and stiffness from the shoulders down to the feet. Like @lizzier I had to work my way out of bed gradually. Some mornings I thought I would faint from the pain. The stiffness stayed all day. I could still walk with difficulty, but it didn't help much. PMR restricts blood flow. After a number of months, the symptoms of PMR decreased, but I got new pains in my neck, face and head, Giant Cell Arteritis. This is treated with higher dosage of Prednisone. I'm feeling much better now. I hope you do too.

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My experience is constant pain, I have had a bit of a reprieve from time to time , but recently have had a horrible flare. My doctor wants to put me back on steroids, due to the long term side effects and that it really didn’t help with pain my doctor agreed. I feel my doctor is no longer a good fit for me so I am seeking someone new
I am riddled with pain, and very discouraged

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@sdenver

Has anyone checked for allergies

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Not to my knowledge

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I have terrible pain in my legs, sometimes in my shoulders and joints! I guess i need to go see a ruematologist?

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This site has given me much hope as people share their stories about PMR. I am back on prednisone 10 mg as I became symptomatic as I tried to wean off. There is such relief of the horrible hip pain and the overpowering fatigue. I have trouble getting out of bed, walking and rising from a chair. Bless you all for your stories of hope!

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@tsc

Hi GCAP, PMR is an autoimmune disorder and there are warnings on all products that contain melatonin not to take if you have an autoimmune disorder. There were some previous posts about this you may want to check out.

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Thank you. I did not know that. I will look further into it.

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@dermnurse68

My experience is constant pain, I have had a bit of a reprieve from time to time , but recently have had a horrible flare. My doctor wants to put me back on steroids, due to the long term side effects and that it really didn’t help with pain my doctor agreed. I feel my doctor is no longer a good fit for me so I am seeking someone new
I am riddled with pain, and very discouraged

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My first Rheumy wasn't very good, but I got a different doc when he left, and he's excellent. Very up to date, and thorough. In our state there aren't many choices, but there is one good practice. It's really OK to even ask for a different doc within the same practice. Most docs aren't bothered by that. Just don't give up the one you have until you line up someone else. Often just a frank talk can clear the air with your current doc if he isn't too egoistic.

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@lizzier

My first Rheumy wasn't very good, but I got a different doc when he left, and he's excellent. Very up to date, and thorough. In our state there aren't many choices, but there is one good practice. It's really OK to even ask for a different doc within the same practice. Most docs aren't bothered by that. Just don't give up the one you have until you line up someone else. Often just a frank talk can clear the air with your current doc if he isn't too egoistic.

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Thank you

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