1. < Polymyalgia Rheumatica (PMR)

PMR: Pain moving around your body

Posted by theref @theref, Sep 4, 2022

Hi, I got diagnosed with PMR about a month ago and have been in constant pain since then. I’m working with my Doc trying to get the Prednisone dosage sorted but everyday is pretty rough, walking being pretty difficult until early/mid afternoon. I’ve noticed that the pain moves randomly between my knees, hips me shoulders with the pain each day being stronger in different parts of my body. And today completely out of the blue one of my elbows has become quite painful - random!!! The joys of PMR!! Wondering if this is common with others? Thanks

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milld835 | @milld835 | Sep 6, 2022
In reply to @theref "Thanks for that John. Hmm it doesn’t really sound like what’s going on. My Doctor is..." + (show)
@theref

Thanks for that John. Hmm it doesn’t really sound like what’s going on. My Doctor is very sure that I have PMR and research certainly supports it. There may be a couple of things going that need exploring. I’ll be catching up with the Doc soon so will have a conversation about that.

Really appreciate your response - very useful!!!

Cheers

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I was diagnosed with PMR back in Jan. 2022 and put on 20mg Prednisone immediately and the pain also subsided immediately (like overnight). I had been completely debilitated for the previous 5 months. Basically could do nothing, even sit on toilet or reach around. Lost use of my right hand and had to where a splint, which effect my work. Couldn't dress very well. It took an extremely long time. Could not drive as my neck was not co-operating, or my arms and shoulders. It was a terrible time.
Pred was like the miracle cure, however, reducing the dosage is not easy. I'm down to 11.5 mg as of this week. Some pain, but mostly manageable. Not in a rush as small amounts at a time (like .5 mg) seem to work better than a huge drop. It's not a race to get off the Prednisone. It's about pain management and quality of life during this time. Don't get dragged into the "you must reduce quickly" thing that some doctors and rheumatologist tend to believe. My new GP says slowly and if the pain returns go up a bit and he says "at least you are trying". All the best!

REPLY
2 replies
tillysam | @tillysam | Sep 7, 2022
In reply to @milld835 "I was diagnosed with PMR back in Jan. 2022 and put on 20mg Prednisone immediately and..." + (show)
@milld835

I was diagnosed with PMR back in Jan. 2022 and put on 20mg Prednisone immediately and the pain also subsided immediately (like overnight). I had been completely debilitated for the previous 5 months. Basically could do nothing, even sit on toilet or reach around. Lost use of my right hand and had to where a splint, which effect my work. Couldn't dress very well. It took an extremely long time. Could not drive as my neck was not co-operating, or my arms and shoulders. It was a terrible time.
Pred was like the miracle cure, however, reducing the dosage is not easy. I'm down to 11.5 mg as of this week. Some pain, but mostly manageable. Not in a rush as small amounts at a time (like .5 mg) seem to work better than a huge drop. It's not a race to get off the Prednisone. It's about pain management and quality of life during this time. Don't get dragged into the "you must reduce quickly" thing that some doctors and rheumatologist tend to believe. My new GP says slowly and if the pain returns go up a bit and he says "at least you are trying". All the best!

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It is not a race. Just taper off slowly so that you feel well.

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theref | @theref | Sep 8, 2022
In reply to @tillysam "I can relate to you. The same thing is happening to me. I have been complaining..." + (show)
@tillysam

I can relate to you. The same thing is happening to me. I have been complaining for a number of months of pain in my neck, upper arms , shoulders, knees and hips. Because my sedimentation rate was ok my rheumatologist ignored me. Finally, after experiencing a week of horrible pain, my rheumatologist said he thought I had PMR! I was hoping that I would not have to increase the Prednisone again but he moved me up to 10 mg. The awful pain has subsided. Hallelujah!

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Hey @tillysam that's awesome news that your pain has subsided. But what bloody nuisance having to go through all that period of pain. I was lucky (I guess) in that mine came on relatively quickly and became quite severe quickly - walking became very difficult. I;ve been on the Prednisone for about a month now - initially 25mg, now down to 20 mg and there's definitely positive progress. Never pain free, but definitely manageable and improving. I certainly consider myself to be very fortunate. Take care

REPLY
1 reply
theref | @theref | Sep 8, 2022
In reply to @sharonanng "My hands continue to be swollen and painful, especially in the morning. Rheumatologist says not PMR...." + (show)
@sharonanng

My hands continue to be swollen and painful, especially in the morning. Rheumatologist says not PMR. Validating to hear from others who have the same issue as we deal with PMR. I do find that moving and exercising helps a lot, with my mood as well as my pain level. Sometimes it's hard to stay positive. Even when the pain is tolerable, it gets old. I so appreciate all of your posts, validations and helpful suggestions.

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Hey Sharon - you're so right about moving and exercising. As the old saying goes "move it or lose it"!! I'm certainly a firm believer in that and find it really helps, not just with mobility but with mental health and wellbeing. Stay strong Sharon - you'll smash through this!!

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1 reply
theref | @theref | Sep 8, 2022
In reply to @milld835 "I was diagnosed with PMR back in Jan. 2022 and put on 20mg Prednisone immediately and..." + (show)
@milld835

I was diagnosed with PMR back in Jan. 2022 and put on 20mg Prednisone immediately and the pain also subsided immediately (like overnight). I had been completely debilitated for the previous 5 months. Basically could do nothing, even sit on toilet or reach around. Lost use of my right hand and had to where a splint, which effect my work. Couldn't dress very well. It took an extremely long time. Could not drive as my neck was not co-operating, or my arms and shoulders. It was a terrible time.
Pred was like the miracle cure, however, reducing the dosage is not easy. I'm down to 11.5 mg as of this week. Some pain, but mostly manageable. Not in a rush as small amounts at a time (like .5 mg) seem to work better than a huge drop. It's not a race to get off the Prednisone. It's about pain management and quality of life during this time. Don't get dragged into the "you must reduce quickly" thing that some doctors and rheumatologist tend to believe. My new GP says slowly and if the pain returns go up a bit and he says "at least you are trying". All the best!

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hey @milld835 what an awful experience that you went through for that 5 months. Thank god you got the diagnosis and now are on the road to recovery. As you say, it's not a race to get off Prednisone. Do what you need to do to keep improving and keep that pain at bay!

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paelwell | @paelwell | Sep 9, 2022
In reply to @theref "Hey Sharon - you're so right about moving and exercising. As the old saying goes "move..." + (show)
@theref

Hey Sharon - you're so right about moving and exercising. As the old saying goes "move it or lose it"!! I'm certainly a firm believer in that and find it really helps, not just with mobility but with mental health and wellbeing. Stay strong Sharon - you'll smash through this!!

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When I exercise more than a very minimal amount, my pain increases a good deal for several days. I haven't found a solution for this.

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2 replies
Teri | @tsc | Sep 9, 2022
In reply to @paelwell "When I exercise more than a very minimal amount, my pain increases a good deal for..." + (show)
@paelwell

When I exercise more than a very minimal amount, my pain increases a good deal for several days. I haven't found a solution for this.

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Hi @paelwell, are you taking any prednisone? I had PMR, then Giant Cell Arteritis for a year before diagnosis. With the PMR, my pain was constant, everywhere from the neck down. I could manage a morning walk, for about an hour, and could not understand why I still felt so stiff like the Tin Man after walking. I couldn't manage much other exercise because it hurt so much. Once in a while, I used a foam roller on the floor, very tricky manuevering on that. I got a little relief with some tingling. With the Giant Cell Arteritis, I had anemia (the anemia of chronic inflammation) so I was extremely fatigued. I was diagnosed late last May, put on 40 mg prednisone, now down to .5 mg. Everything's gone well so far. In discussions of PMR and Exercise, some members have mentioned flareups after exercising too much. I wish you the best.

REPLY
tillysam | @tillysam | Sep 10, 2022
In reply to @theref "Hey @tillysam that's awesome news that your pain has subsided. But what bloody nuisance having to..." + (show)
@theref

Hey @tillysam that's awesome news that your pain has subsided. But what bloody nuisance having to go through all that period of pain. I was lucky (I guess) in that mine came on relatively quickly and became quite severe quickly - walking became very difficult. I;ve been on the Prednisone for about a month now - initially 25mg, now down to 20 mg and there's definitely positive progress. Never pain free, but definitely manageable and improving. I certainly consider myself to be very fortunate. Take care

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Thanks for your reply. I truly think that my life will be a roller coaster with the Prednisone because every time I think I am at a good level something else hurts me.

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3 replies
theref | @theref | Sep 10, 2022
In reply to @paelwell "When I exercise more than a very minimal amount, my pain increases a good deal for..." + (show)
@paelwell

When I exercise more than a very minimal amount, my pain increases a good deal for several days. I haven't found a solution for this.

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Hi @paelwell , yep that's exactly my experience too. I'm pretty new to this PMR gig and trying to find the right balance of exercise that I can cope wth. Good luck!!

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theref | @theref | Sep 10, 2022
In reply to @tillysam "Thanks for your reply. I truly think that my life will be a roller coaster with..." + (show)
@tillysam

Thanks for your reply. I truly think that my life will be a roller coaster with the Prednisone because every time I think I am at a good level something else hurts me.

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Oh no, that reply sucks @tillysam. Stay strong and keep experimenting in what your body can cope with and hopefully you'll find a healthy sustainable balance. Take care

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