1. < Polymyalgia Rheumatica (PMR)
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I think I have PMR and I’m terrified

Posted by martyn @martyn, Aug 25 5:26pm

I’m new on here because I guess I’m desperately seeking some comfort. I’m 58, active, keen cyclist doing 100 miles a week and live tennis. Then , five weeks ago I started the excruciating arm and shoulder pains. Did not even know what PMR was then and still didn’t really think I had PMR even when a friend told me to read up about it. I just thought it was some nerve issue.. anyway, long story short, went to rheumatologist today and he said 90% it’s PMR and will do the steroid test over next 4 days to get a confirmed diagnosis.
I’ve spent all night reading about this horrible condition and I’m filled with dread and a little despair. I have been very touched by reading some of the testimonies on this forum and I guess I’m just looking for some positive thoughts as I set out on this PMR journey that until a few weeks ago I never even imagined. I feel so stuck because I know the morning pain (which eases by afternoon but never goes away) is totally debilitating but I’m also very concerned about the side effects of the corticosteroids. Has anyone tried to battle it without taking the drugs? And if I have to take the steroids how bad are the side effects? I feel in a very dark place and feel as though I’ve suddenly gone from being a fit and young at heart 50 something to old age in a heartbeat :..
I’m sure once this settles in I’ll get to grips with it as I’ve managed some pretty tough times with a back surgery that went wrong but this feels so unknown and sinister. Apologies for being on the side of melodramatic but any positivity anyone whom is dealing with PMR can send my way would be very welcome… take care of yourselves
Martyn

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

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Mike | @dadcue | Sep 7 6:31pm
In reply to @rosi75 "@martyn yes, the back and forth with feeling positive then it turning negative and then back..." + (show)
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@martyn yes, the back and forth with feeling positive then it turning negative and then back again is completely normal - as a human being that values your life and your health you are experiencing something very difficult so this back and forth is natural (re: my therapist). I would often have difficult thoughts amidst doing something supposedly fun and it bothered me, but being bothered and trying to banish negativity was not a good solution for me, a hard lesson I am still learning. I was mentioning in my previous post about what I may have learned from this experience, and that came to me this morning, so I wanted to share. I wouldn't have thought about this if not for your post so thank you for that 🙂

It sounds like walking in the woods with friends is a happy place for you, seek more of those happy moments even if at some point it might seem excessive to you logically (another lesson I learned). But still remember you don't have to be okay all the time, you are human...

It's so easy to say take care of yourself but can be really hard to do in practice, so I encourage that. Two years ago I bought a book on Self-Compassion by Kristen Neff but it remains on my shelf barely read, I have moments where I pick it up but then shortly thereafter put it back down because I don't like self-pity, even though when I read it, it's not about that at all.

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@rosi75

I saw a therapist after 13 years of PMR and prednisone. I was okay with talking about things in general. I thought everything was good after I tapered off prednisone without all the pain. The therapist picked up on how I talked about being in the "eye of the storm" instead of a storm that was over. She asked me some very specific questions about the storm and I cried. She said I was displaying some characteristics of Medical PTSD.

Don't let the following happen:

"A person in chronic pain often assumes that their pain is a signal of potential harm or damage and will thus want to rest or avoid movements that may trigger that pain. Unfortunately, this can lead to a vicious cycle of decreased activity leading to physical deconditioning, which makes further activity more aversive, and can also lead to withdrawal from positive life experiences."
-------------------------
Fortunately, I have moved on. I now write about the storm as something that happened in the past. That is therapeutic as well. At least, I no longer feel like I'm in the eye of the storm anymore. Post storm recovery takes time when the storm seemed like it would never end. Some therapy sessions might have been helpful during the storm.

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paulmark | @paulmark | Sep 11 4:15pm
In reply to @dadcue "@rosi75 I saw a therapist after 13 years of PMR and prednisone. I was okay with..." + (show)
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@rosi75

I saw a therapist after 13 years of PMR and prednisone. I was okay with talking about things in general. I thought everything was good after I tapered off prednisone without all the pain. The therapist picked up on how I talked about being in the "eye of the storm" instead of a storm that was over. She asked me some very specific questions about the storm and I cried. She said I was displaying some characteristics of Medical PTSD.

Don't let the following happen:

"A person in chronic pain often assumes that their pain is a signal of potential harm or damage and will thus want to rest or avoid movements that may trigger that pain. Unfortunately, this can lead to a vicious cycle of decreased activity leading to physical deconditioning, which makes further activity more aversive, and can also lead to withdrawal from positive life experiences."
-------------------------
Fortunately, I have moved on. I now write about the storm as something that happened in the past. That is therapeutic as well. At least, I no longer feel like I'm in the eye of the storm anymore. Post storm recovery takes time when the storm seemed like it would never end. Some therapy sessions might have been helpful during the storm.

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@dadcue hi

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boomermeg | @boomermeg | Sep 12 6:04pm
In reply to @dadcue "@rosi75 I saw a therapist after 13 years of PMR and prednisone. I was okay with..." + (show)
Profile picture for Mike @dadcue

@rosi75

I saw a therapist after 13 years of PMR and prednisone. I was okay with talking about things in general. I thought everything was good after I tapered off prednisone without all the pain. The therapist picked up on how I talked about being in the "eye of the storm" instead of a storm that was over. She asked me some very specific questions about the storm and I cried. She said I was displaying some characteristics of Medical PTSD.

Don't let the following happen:

"A person in chronic pain often assumes that their pain is a signal of potential harm or damage and will thus want to rest or avoid movements that may trigger that pain. Unfortunately, this can lead to a vicious cycle of decreased activity leading to physical deconditioning, which makes further activity more aversive, and can also lead to withdrawal from positive life experiences."
-------------------------
Fortunately, I have moved on. I now write about the storm as something that happened in the past. That is therapeutic as well. At least, I no longer feel like I'm in the eye of the storm anymore. Post storm recovery takes time when the storm seemed like it would never end. Some therapy sessions might have been helpful during the storm.

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@dadcue Can't thank you enough for sharing your experience with us. I can tell you I resonated with what your therapist said so much that I had an immediate response just reading the words. Such profoundly powerful words for someone who's lived it. Too many years of chronic pain, and that's prior to the brutal PMR pain this year. It brought the tears. They need to come.
Thank you. You had a great therapist.
Only people who've lived with chronic pain really "get it," and obviously, some really great therapists!! Blessings.

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kare1 | @kare1 | Sep 13 11:25am

Yep to therapy. When I was hit w/PMR January 2025 (71.5 yrs old). I too was shocked, gobsmacked, bamboozled, furious- hey man, I said, I was always healthy. What just happened? Am I a failure? Then the idea of prednisone for 2 yrs? Drove me to crying on the sofa. Got the prednisone & it worked overnight. But mentally I felt a loser failure. It drove me to therapy which really was a blessing. I almost thanked PMR for getting me to recognize the importance of therapy. So here I am now just turned 73! I’ve been lowering prednisone VERY SLOWLY. Now alternating 1 & 1.5 mg & still taking methotrexate which was prescribed may 2025!
I can walk which is a fav, newly going to the Y pool to bob around. Keep moving is my key. And take a nap when needed. My hips do ache if I sit too long! Yeah you might gain prednisone weight lose some hair & but it does puff out facial lines (lol) but as you step down your body changes back to your more normal.
I can handle the occasional discomfort prettily easily. That Tylenol for arthritis seems to be very helpful- Tho bummed arthritis creeping up in shoulder joints.
None in my family has this condition not my mom or grandma ( who lived into their 90’s) that I know of. & my 5 brothers/sisters seem free of the PMR & arthritis. I am the oldest so who knows. Anyway I just have to keep moving! Eat vitamins, drink a lot of water, vegan (tho lazy) lifestyle.

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3 replies
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tweetypie13 | @tweetypie13 | Sep 13 3:39pm
In reply to @kare1 "Yep to therapy. When I was hit w/PMR January 2025 (71.5 yrs old). I too was..." + (show)
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Yep to therapy. When I was hit w/PMR January 2025 (71.5 yrs old). I too was shocked, gobsmacked, bamboozled, furious- hey man, I said, I was always healthy. What just happened? Am I a failure? Then the idea of prednisone for 2 yrs? Drove me to crying on the sofa. Got the prednisone & it worked overnight. But mentally I felt a loser failure. It drove me to therapy which really was a blessing. I almost thanked PMR for getting me to recognize the importance of therapy. So here I am now just turned 73! I’ve been lowering prednisone VERY SLOWLY. Now alternating 1 & 1.5 mg & still taking methotrexate which was prescribed may 2025!
I can walk which is a fav, newly going to the Y pool to bob around. Keep moving is my key. And take a nap when needed. My hips do ache if I sit too long! Yeah you might gain prednisone weight lose some hair & but it does puff out facial lines (lol) but as you step down your body changes back to your more normal.
I can handle the occasional discomfort prettily easily. That Tylenol for arthritis seems to be very helpful- Tho bummed arthritis creeping up in shoulder joints.
None in my family has this condition not my mom or grandma ( who lived into their 90’s) that I know of. & my 5 brothers/sisters seem free of the PMR & arthritis. I am the oldest so who knows. Anyway I just have to keep moving! Eat vitamins, drink a lot of water, vegan (tho lazy) lifestyle.

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@kare1 I’ve got that story.
my ortho dr sent me to Aqua PT, and it was a savior. Walking, sideways, backwards, crossover, pool weights for ankles and arms. Easy hour with fresh air. First time on my own, I could not get up the steps to get out 😬 (that’s how weak my legs were).
Yes, arthritis is a bummer. My dr explained the PMR enhanced its latent presence. Good news, my exercise has pretty much pushed it in the side mirror.

Keep up the great work….

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Mary Kelly Dunn | @mlz | Sep 13 7:19pm

Hi Martyn,
I remember feeling terrified in the beginning. I was overwhelmed by the unknown so I started reading everything I could.
As time went by (dx'd April 2025), I've become more sanguine about my PMR realizing that I can't change the diagnosis. I spend my time now not even thinking about it. Or thinking "it's okay." This change has made me feel happier and as a result, healthier! Let me know how it goes for you. I still get bummed out at times.

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1 reply
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tweetypie13 | @tweetypie13 | Sep 13 9:23pm
In reply to @mlz "Hi Martyn, I remember feeling terrified in the beginning. I was overwhelmed by the unknown so..." + (show)
Profile picture for Mary Kelly Dunn @mlz

Hi Martyn,
I remember feeling terrified in the beginning. I was overwhelmed by the unknown so I started reading everything I could.
As time went by (dx'd April 2025), I've become more sanguine about my PMR realizing that I can't change the diagnosis. I spend my time now not even thinking about it. Or thinking "it's okay." This change has made me feel happier and as a result, healthier! Let me know how it goes for you. I still get bummed out at times.

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@mlz well said!

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pmrnew | @pmrnew | Sep 14 8:23am
In reply to @kare1 "Yep to therapy. When I was hit w/PMR January 2025 (71.5 yrs old). I too was..." + (show)
Profile picture for kare1 @kare1

Yep to therapy. When I was hit w/PMR January 2025 (71.5 yrs old). I too was shocked, gobsmacked, bamboozled, furious- hey man, I said, I was always healthy. What just happened? Am I a failure? Then the idea of prednisone for 2 yrs? Drove me to crying on the sofa. Got the prednisone & it worked overnight. But mentally I felt a loser failure. It drove me to therapy which really was a blessing. I almost thanked PMR for getting me to recognize the importance of therapy. So here I am now just turned 73! I’ve been lowering prednisone VERY SLOWLY. Now alternating 1 & 1.5 mg & still taking methotrexate which was prescribed may 2025!
I can walk which is a fav, newly going to the Y pool to bob around. Keep moving is my key. And take a nap when needed. My hips do ache if I sit too long! Yeah you might gain prednisone weight lose some hair & but it does puff out facial lines (lol) but as you step down your body changes back to your more normal.
I can handle the occasional discomfort prettily easily. That Tylenol for arthritis seems to be very helpful- Tho bummed arthritis creeping up in shoulder joints.
None in my family has this condition not my mom or grandma ( who lived into their 90’s) that I know of. & my 5 brothers/sisters seem free of the PMR & arthritis. I am the oldest so who knows. Anyway I just have to keep moving! Eat vitamins, drink a lot of water, vegan (tho lazy) lifestyle.

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@kare1 @mlz I am F 64 yo active, gym 6 days a week, hiking etc. yep, does it help to try to see a positive side. Pain started Dec 2025, dx'd january 2026 and I refused the pred side effects and fasted 37 days total (6 and then 31 and BP became excellent) over january, february and beginning March. As I already had hi cholesterol (familial) hi BP this gave me a wake up call. At that point it was simple to stay on a healthy diet, some weight gain (less than the previous loss) and only 6 months pred (mar 20 to sep 9) PMR pain still there but now just shoulder, left and bicep. Like I can barely lift a coffee cup with left arm, more weak than pain. Off pred, more comfortable weight, cholesterol and BP coming down, now hoping hair will come back. So, yes, maybe this was a cardiac wake up call and things will be better going forward.

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bandorino | @bandorino | Sep 14 10:09am
In reply to @kare1 "Yep to therapy. When I was hit w/PMR January 2025 (71.5 yrs old). I too was..." + (show)
Profile picture for kare1 @kare1

Yep to therapy. When I was hit w/PMR January 2025 (71.5 yrs old). I too was shocked, gobsmacked, bamboozled, furious- hey man, I said, I was always healthy. What just happened? Am I a failure? Then the idea of prednisone for 2 yrs? Drove me to crying on the sofa. Got the prednisone & it worked overnight. But mentally I felt a loser failure. It drove me to therapy which really was a blessing. I almost thanked PMR for getting me to recognize the importance of therapy. So here I am now just turned 73! I’ve been lowering prednisone VERY SLOWLY. Now alternating 1 & 1.5 mg & still taking methotrexate which was prescribed may 2025!
I can walk which is a fav, newly going to the Y pool to bob around. Keep moving is my key. And take a nap when needed. My hips do ache if I sit too long! Yeah you might gain prednisone weight lose some hair & but it does puff out facial lines (lol) but as you step down your body changes back to your more normal.
I can handle the occasional discomfort prettily easily. That Tylenol for arthritis seems to be very helpful- Tho bummed arthritis creeping up in shoulder joints.
None in my family has this condition not my mom or grandma ( who lived into their 90’s) that I know of. & my 5 brothers/sisters seem free of the PMR & arthritis. I am the oldest so who knows. Anyway I just have to keep moving! Eat vitamins, drink a lot of water, vegan (tho lazy) lifestyle.

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@kare1 Me too! It was smack to the upside of my head when I was diagnosed in March this year! I also eat plant-based, (for the past 8 yrs since diagnosed with congestive heart failure. Was able to get my ejection fraction back up to normal!) Not being able to get out of bed because I was so stiff and in so much pain was strange for me. I felt like a whiny baby for awhile. The official diagnosis however has made me realize that I don't have to "tough it out" which I am inclined to do. (I am the eldest of 4 and 68 yrs old.) It took me a good 2 months to realize I didn't need to suffer!
All the best to you!

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