1. < Polymyalgia Rheumatica (PMR)

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

Posted by Ethan McConkey, Moderator @ethanmcconkey, Dec 18, 2019

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.

lanieg | @lanieg | Feb 19, 2023

Hi Cindy
No one is ever the reason they have a disease. Nor is God punishing you for something you did or didn't do.
Start today with loving yourself and doing something just for you. Self care is very important whether you have PMR or diabetes. Try to stay positive although that can be difficult with the pain. I understand and pray for your well-being.

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bradninchgirl | @bradninchgirl | Feb 19, 2023
In reply to @cindyjane "I'm at 20 mg with Tylenol in the morning. I just wish I could sleep solid...." + (show)
@cindyjane

I'm at 20 mg with Tylenol in the morning. I just wish I could sleep solid. I've had no illness or injury so may be stress.

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Exercise might help. And are you taking magnesium? I find that when I can't sleep I read or get up and play a computer game for 20 minutes. Then i go back to bed and I can go to sleep. I am frequently told that would make my wakefulness worse, but for me it doesn't. Sometimes one Tylenol at night works for me as well. I guess we all need to work out what works for us.

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1 reply
bradninchgirl | @bradninchgirl | Feb 19, 2023
In reply to @tricialynn "I was diagnosed with PMR in October 2020 and was put on 20 mg of Prednisone...." + (show)
@tricialynn

I was diagnosed with PMR in October 2020 and was put on 20 mg of Prednisone. I am diabetic so my blood sugars rose at which time my endocrinologist put me on insulin shots. Everything improved for 6 months. Then my rheumatologist felt it was time to taper the prednisone meds. At the same time I received my first Pfyzer vaccination in March 2021. I began having muscular aches in my calves. In June 2021 I received my second vaccination. The muscular aches increased. I was concerned that the tapering of the prednisone was too soon so my rheumatologist increased it to 25 mg. There was no change. So I started the taper once again. In Dec 2021 I received my first booster A week later my muscular and achy joints in
My legs increased and walking was laborious. I have continued deceasing prednisone meds and am now on 2 mg a day. My CRP readings are normal yet my mobility situation has not improved. When I sit or lie down I fel normal but when I stand or start to walk mobility is an issue. Is anyone else experiencing what I am going through?

Jump to this post

Yes. I went back to 3mg of prednisone a day and some of the pain and stiffness did disappear. Although the pain is nothing as bad as it was, I still have no wish to feel even a little stiffness and sore muscles. But what can you do? It is what it is. One thing my Rheumatologist did stress, don't try and tough the pain out, that will only make it worse. My salvation is reading and pc computer games. It takes away the pan for a little while. I have improved enough over the past year that I really feel like all this will come to an end, but at 78 I feel like the clock is ticking.

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2 replies
cindyjane | @cindyjane | Feb 19, 2023
In reply to @bradninchgirl "Exercise might help. And are you taking magnesium? I find that when I can't sleep I..." + (show)
@bradninchgirl

Exercise might help. And are you taking magnesium? I find that when I can't sleep I read or get up and play a computer game for 20 minutes. Then i go back to bed and I can go to sleep. I am frequently told that would make my wakefulness worse, but for me it doesn't. Sometimes one Tylenol at night works for me as well. I guess we all need to work out what works for us.

Jump to this post

Good morning. Started magnesium yesterday. I too just get up and read. It's funny how I can sleep better on a couch then in a bed sometimes. I take Tylenol PM at night. The last 2 nights have been better. YIPPEE 😁

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cindyjane | @cindyjane | Feb 19, 2023
In reply to @tricialynn "I was diagnosed with PMR in October 2020 and was put on 20 mg of Prednisone...." + (show)
@tricialynn

I was diagnosed with PMR in October 2020 and was put on 20 mg of Prednisone. I am diabetic so my blood sugars rose at which time my endocrinologist put me on insulin shots. Everything improved for 6 months. Then my rheumatologist felt it was time to taper the prednisone meds. At the same time I received my first Pfyzer vaccination in March 2021. I began having muscular aches in my calves. In June 2021 I received my second vaccination. The muscular aches increased. I was concerned that the tapering of the prednisone was too soon so my rheumatologist increased it to 25 mg. There was no change. So I started the taper once again. In Dec 2021 I received my first booster A week later my muscular and achy joints in
My legs increased and walking was laborious. I have continued deceasing prednisone meds and am now on 2 mg a day. My CRP readings are normal yet my mobility situation has not improved. When I sit or lie down I fel normal but when I stand or start to walk mobility is an issue. Is anyone else experiencing what I am going through?

Jump to this post

I'm starting to really think the COVID shots are the cause of this mess. YIKES!!😳

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1 reply
tricialynn | @tricialynn | Feb 19, 2023

I too have had those thoughts. Unfortunately when I tell the doctors that my mobility became more difficult with muscular tightness in the calves after the vaccinations, they don’t comment. Most likely this is all new to them.

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tricialynn | @tricialynn | Feb 19, 2023
In reply to @cindyjane "I'm starting to really think the COVID shots are the cause of this mess. YIKES!!😳" + (show)
@cindyjane

I'm starting to really think the COVID shots are the cause of this mess. YIKES!!😳

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Hi Cindy Jane
Thank you for your response
Tricia

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tricialynn | @tricialynn | Feb 19, 2023
In reply to @bradninchgirl "Yes. I went back to 3mg of prednisone a day and some of the pain and..." + (show)
@bradninchgirl

Yes. I went back to 3mg of prednisone a day and some of the pain and stiffness did disappear. Although the pain is nothing as bad as it was, I still have no wish to feel even a little stiffness and sore muscles. But what can you do? It is what it is. One thing my Rheumatologist did stress, don't try and tough the pain out, that will only make it worse. My salvation is reading and pc computer games. It takes away the pan for a little while. I have improved enough over the past year that I really feel like all this will come to an end, but at 78 I feel like the clock is ticking.

Jump to this post

Thank you for your response. This is a very difficult journey at our age.

REPLY
cookiegirl1944 | @cookiegirl1944 | Feb 19, 2023
In reply to @tricialynn "I was diagnosed with PMR in October 2020 and was put on 20 mg of Prednisone...." + (show)
@tricialynn

I was diagnosed with PMR in October 2020 and was put on 20 mg of Prednisone. I am diabetic so my blood sugars rose at which time my endocrinologist put me on insulin shots. Everything improved for 6 months. Then my rheumatologist felt it was time to taper the prednisone meds. At the same time I received my first Pfyzer vaccination in March 2021. I began having muscular aches in my calves. In June 2021 I received my second vaccination. The muscular aches increased. I was concerned that the tapering of the prednisone was too soon so my rheumatologist increased it to 25 mg. There was no change. So I started the taper once again. In Dec 2021 I received my first booster A week later my muscular and achy joints in
My legs increased and walking was laborious. I have continued deceasing prednisone meds and am now on 2 mg a day. My CRP readings are normal yet my mobility situation has not improved. When I sit or lie down I fel normal but when I stand or start to walk mobility is an issue. Is anyone else experiencing what I am going through?

Jump to this post

I am experiencing what you are going through. I was diagnosed with PMR nine months ago and was started out on 30 mg of Prednisone. At that dose I felt no pain , no depression and had so much energy I could work 15 hours a day non stop. Once I got down to 20 mg a day then the pain, depression, fatigue came back. The doctor did not know what to think and declined to give me methotrexate to help me. He just kept reducing the dose of prednisone until I got to seven mg a day. Pain and stiffness in my lower back, hips and bath legs. Can hardly move. Last week I was seen my a rheumatologist at the Mayo Clinic in Rochester who said he did not believe I had PMR. He wants me now over the course of 12 weeks to get off the prednisone. He thinks I may have fibromyalgia and wanted me to take Cymbalta which I declined. I have no generalized pain, only in my hips and legs. He will give me in a few days a cortisone injection in one hip plus I will have a nerve conduction test. Now I am confused as to what is causing the leg pain and stiffness so any ideas from others would be greatly appreciated.

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1 reply
Teri | @tsc | Feb 19, 2023
In reply to @redboat "Thanks for your kind comments and the background. My pain, prior to getting prednisone, was 24/7..." + (show)
@redboat

Thanks for your kind comments and the background.

My pain, prior to getting prednisone, was 24/7 and SEVERE. There was no stiffness, just intense pain in my shoulders, arms, and hips It was not something I would have been willing to continue living with if I had not found treatment.

Now that I am on prednisone (20mg/day), the pain is worse in the morning (about a 3 or 4 out of 10), and starts to let up around 2 pm, finally going down to something like 2/10 by late evening. Piece of cake compared to what I had before. But it's not ideal - I used to exercise regularly and be very active outdoors. I'm reduced to taking gentle walks.

It's not clear to me that my rheumatologist understands how severe my case is. She did not interact with me until I had already been on prednisone for about 5 days - my PCP made the original diagnosis and gave me a prednisone prescription, then referred me to a rheumatologist for long term treatment. The rheumatologist is already talking about "tapering" while I'm still in a fair amount of pain! Terrifying! (My PCP assures me that won't happen.)

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Before I started prednisone, I could manage a walk, 45 minutes or so, that left me exhausted. I spent the rest of the day on the couch, except for household chores reduced to a minimum. After I started prednisone I was diagnosed with osteoporosis. I'm sure the year on the couch didn't help. Maybe if you're not comfortable with the rheumatologist you can find another. Take care.

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