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.

bren2023 | @bren2023 | Jun 22, 2023
In reply to @susang222 "Yes, I have been taking prednisone for one year and am on 3 mg now. I..." + (show)
@susang222

Yes, I have been taking prednisone for one year and am on 3 mg now. I want to put the Voltaren cream on my shoulders, but I called Voltaren, and they said it doesn't work on my shoulders. From what you wrote, it does not sound like Voltaren cream helps with PMR pain.

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I would have to disagree with the statement that Voltaren gel does not work on shoulders. I use it on my neck and shoulders and it helps a lot.

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bren2023 | @bren2023 | Jun 22, 2023
In reply to @susang222 "Has anyone used Voltaren Arthritis Pain for PMR? The pharmacist suggested it. Thanks." + (show)
@susang222

Has anyone used Voltaren Arthritis Pain for PMR? The pharmacist suggested it. Thanks.

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It helps me

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1 reply
ripley | @ripley | Jun 22, 2023
In reply to @emo "Those were pretty much my dad’s symptoms, except he had a little more mobility in his..." + (show)
@emo

Those were pretty much my dad’s symptoms, except he had a little more mobility in his shoulders. I have fibromyalgia (and I am 40), and we learned that a few things that distinguish PMR from at least my fibro are: Age (Fibro can happen at any age, but as you know with PMR, it’s usually with people who are older, sudden onset—it is usually sudden and suddenly severe and functionally limiting, i.e. can’t get out of bed all off a sudden, and it gets worse quickly without treatment—and there’s pain in mostly the “large muscles” (shoulders, hips, core). Also usually, but (annoyingly) not always ESR and CRP blood tests are elevated. He also has “early morning stiffness” that lasted until early afternoon. In his presentation, the fatigue was the most debilitating.

It might be worth talking to your rheumatologist again and asking if it might be PMR or something else, especially if you’re in a lot of pain? There are so many different types of inflammatory arthropathies that it seems like it could be easy to accidentally pick one over the other, even for someone who’s aware it may not be top of mind. I have a different inflammatory arthritis, and I was evaluated at Mayo Rochester, and the then-fellow and now rheumatologist whose area of expertise is my condition, missed the diagnosis. So it can happen sometimes.

I hope you feel better soon.

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Being you have Fibro, did you ever consider that you might have PMR instead? My pain came on suddenly a few days after I got Covid last January and lasted a couple months. Tylenol and Ibuprofen didn't help.
After that, at times the pain was minimal or gone, then has flared up again twice, most recently 5-6 weeks ago. My pain is worse in the morning, mainly in my neck, shoulders and upper arms. Later in the day the pain moves to my legs, and by 8PM or so my pain often goes away or is very minimal. Never bad enough that I can't get out of bed or a chair. I guess I should talk to a rheumatologist to get an answer. At least PMR is treatable, where there's not much out there to alleviate Fibro. I welcome any insight or opinions. Thanks.

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emo | @emo | Jun 22, 2023
In reply to @susang222 "Yes, I have been taking prednisone for one year and am on 3 mg now. I..." + (show)
@susang222

Yes, I have been taking prednisone for one year and am on 3 mg now. I want to put the Voltaren cream on my shoulders, but I called Voltaren, and they said it doesn't work on my shoulders. From what you wrote, it does not sound like Voltaren cream helps with PMR pain.

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I feel like it’s worth a try, if you don’t mind paying for it? I’ve never heard it said before that it’s not effective for the shoulder. I have been told several times it works best when the source of the pain is closer to the surface of the skin—but that’s because with topicals, there’s a limit to the absorption of the anti-inflammatory. But then again it’s hard to know exactly where the pain is coming from and sometimes even an indirect approach can give relief.

For what it’s worth, I’ve also tried CBD cream and have found that to help; so had my dad with his PMR pain. My Neurology NP explained there are receptors in the skin for it, which could explain why some people might feel relief?

Hope the Voltaren helps though!

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vjs | @vjs | Jun 22, 2023

Since taking 15 mg prednistive had bouts of fast heart beat upon getting up and walking. Not all the time. Just sometimes. Any correlation between prednisone and heart beat?

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1 reply
ripley | @ripley | Jun 23, 2023
In reply to @ellegeee "Hi. It’s so nice to hear a more positive story! If your symptoms just started in..." + (show)
@ellegeee

Hi. It’s so nice to hear a more positive story! If your symptoms just started in February, it seems like you’re making very fast progress without too many setbacks. My symptoms started in March and my Rheumy initially gave me the one week tapering dose pack and since that worked immediately, she then put me on 6 mg of Methylprednisolone rather than Prednisone. I just tapered to 5 mg yesterday and so far so good. My labs were never elevated and I did not have morning pain, but I had all the other PMR symptoms which were alleviated by the steroid. I also have ongoing back issues (stenosis, etc). The steroid masked that pain, but with the lower dose, I’m already having periods of back pain. ‘Hope you continue to taper easily!

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Can you please explain what symptoms you were having and if they lasted all day? You mentioned you did not have "morning pain". Do you mean that you didn't have limited movement such as trouble getting out of bed, raising your arms above your head? Did your Dr ever suspect fibromyalgia instead of PMR?

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1 reply
ellegeee | @ellegeee | Jun 23, 2023
In reply to @ripley "Can you please explain what symptoms you were having and if they lasted all day? You..." + (show)
@ripley

Can you please explain what symptoms you were having and if they lasted all day? You mentioned you did not have "morning pain". Do you mean that you didn't have limited movement such as trouble getting out of bed, raising your arms above your head? Did your Dr ever suspect fibromyalgia instead of PMR?

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Hi Ripley….My initial symptom in March was bilateral upper arm, hip and thigh pain. My labs were normal, but the dr said that since the prednisone immediately took away my symptoms, she suspected PMR rather than fibro. I did have some morning pain initially but now am pain and stiffness free in the mornings. (Actually, that’s my best time of the day symptom-wise). As the day progresses, I have leg stiffness/weakness/heaviness and minor shoulder pain but not the same type of pain I had previously. My leg pains may be related to my spinal stenosis for which I’ll be seeing my spine Dr on Tuesday. This is my 3rd day of tapering from 6mg to 5 mg of methylprednisolone.

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bren2023 | @bren2023 | Jun 24, 2023

I'm still waiting for a diagnosis of PMR or fibromyalgia or something else. I am 81, female, northern Europe ancestry.
I don't run to drs with every ache and pain so when I began having pain in my hips that made it hard to walk but once I started walking it eased up a bit. I basically ignored it saying "oh, it's just bursitis, it will go away" but it didn't , then came the pain in arms,shoulders neck and back of head, so after 5 months and getting worse I went to a doctor near me.
She said it sounds like PMR and sent me for blood tests. Tests did not show the right markers so she just told me it's not PMR and had no further comments. In telling her all my symptoms, she looked at me like I have 3 heads.
So, I went to another doctor who I don't trust either. He suggested Lupus and ordered the tests which did show positive ana and high anti , however I have none of the symptoms of Lupus and at my age the likelihood is remote.
I read a lot, everything I can find and my symptoms also suggest fibromyalgia as well as polymyalgia.
I told him this and he said "Nonsense" fibromyalgia is a made up disease doctors use when they don't know.
He referred me to a rheumatologist with whom I have an appointment in August.
Meanwhile, he prescribed 60 mg a day of prednisone for 14 days! No way in xxxx am I taking 60 mg a day of prednisone, not even for one day. I will take 15 mg for a few days and see if it helps.
One symptom that I can't find the answer to is severe hot flashes that are limited to my face and ears. My face burns but does not feel hot to the touch. I have to keep the room very cool and use fans.
I am anxious to learn what I am dealing with.

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5 replies
vjs | @vjs | Jun 24, 2023
In reply to @bren2023 "I'm still waiting for a diagnosis of PMR or fibromyalgia or something else. I am 81,..." + (show)
@bren2023

I'm still waiting for a diagnosis of PMR or fibromyalgia or something else. I am 81, female, northern Europe ancestry.
I don't run to drs with every ache and pain so when I began having pain in my hips that made it hard to walk but once I started walking it eased up a bit. I basically ignored it saying "oh, it's just bursitis, it will go away" but it didn't , then came the pain in arms,shoulders neck and back of head, so after 5 months and getting worse I went to a doctor near me.
She said it sounds like PMR and sent me for blood tests. Tests did not show the right markers so she just told me it's not PMR and had no further comments. In telling her all my symptoms, she looked at me like I have 3 heads.
So, I went to another doctor who I don't trust either. He suggested Lupus and ordered the tests which did show positive ana and high anti , however I have none of the symptoms of Lupus and at my age the likelihood is remote.
I read a lot, everything I can find and my symptoms also suggest fibromyalgia as well as polymyalgia.
I told him this and he said "Nonsense" fibromyalgia is a made up disease doctors use when they don't know.
He referred me to a rheumatologist with whom I have an appointment in August.
Meanwhile, he prescribed 60 mg a day of prednisone for 14 days! No way in xxxx am I taking 60 mg a day of prednisone, not even for one day. I will take 15 mg for a few days and see if it helps.
One symptom that I can't find the answer to is severe hot flashes that are limited to my face and ears. My face burns but does not feel hot to the touch. I have to keep the room very cool and use fans.
I am anxious to learn what I am dealing with.

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On 15 mg pred to start for PMR, now down to 12.5. Pain has returned. I get facial hot flashes every night and I awake with a red hot face. I believe it’s prednisone related. Annoying.

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