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

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

Teri | @tsc | 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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I have a rotator cuff tear and tendonitis which causes a different kind of pain from the PMR and GCA. It's pretty much always with me, but tolerable, compared to the pain caused by PMR.

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tillysam | @tillysam | Sep 11, 2022

Absolutely. You are not alone in your thinking.

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scpartain | @scpartain | Sep 11, 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.

Jump to this post

Hope you feel better soon. PMR is a very painful and debilitating ailment.

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tillysam | @tillysam | Sep 12, 2022

Talk about being on a roller coaster, I was down to 6 mg when the body pains were quite severe. I was moved up to 10 mg and felt better. Last week I developed a stabbing headache ( nothing like the debilitating headache of GCA) and ended up in the ER. All tests were good and the physician had no idea what was wrong. My rheumatologist put me up to 20 mg and the headache went away, yet I feel awful all told. I plan to see my neurologist just to rule out anything else. I truly do not know what is going on. Any suggestions? Thanks

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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Sep 12, 2022
In reply to @tillysam "Talk about being on a roller coaster, I was down to 6 mg when the body..." + (show)
@tillysam

Talk about being on a roller coaster, I was down to 6 mg when the body pains were quite severe. I was moved up to 10 mg and felt better. Last week I developed a stabbing headache ( nothing like the debilitating headache of GCA) and ended up in the ER. All tests were good and the physician had no idea what was wrong. My rheumatologist put me up to 20 mg and the headache went away, yet I feel awful all told. I plan to see my neurologist just to rule out anything else. I truly do not know what is going on. Any suggestions? Thanks

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@tillysam, I'm wondering if you may have been tapering down on the prednisone too fast or dropping the dosage too much at each taper. I would have a discussion with your rheumatologist on tapering plans. Mine always told me the goal was very little pain when tapering down to the next level.

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meredith101 | @meredith101 | Sep 12, 2022

I was diagnosed three months ago. My main symptoms include pain in the shoulders with limited arm movement when I first wake up. To date I have not started prednisone as I find if I get in a hot tub or shower first thing in the morning my symptoms ease up and within an hour or two I am able to continue with my usual activities. I am wondering is there is anyone out there who has managed their pmr without steroids and what that has been like. What about anti-inflammatory diets?

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Sep 12, 2022
In reply to @meredith101 "I was diagnosed three months ago. My main symptoms include pain in the shoulders with limited..." + (show)
@meredith101

I was diagnosed three months ago. My main symptoms include pain in the shoulders with limited arm movement when I first wake up. To date I have not started prednisone as I find if I get in a hot tub or shower first thing in the morning my symptoms ease up and within an hour or two I am able to continue with my usual activities. I am wondering is there is anyone out there who has managed their pmr without steroids and what that has been like. What about anti-inflammatory diets?

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Hi Meredith @meredith101, Welcome to Connect. Sorry to hear you joined the PMR club but you may one of the lucky ones. I've had similar symptoms in the morning while tapering down on prednisone when my PMR was active but that was the prednisone kicking in a little later in the morning. Activity also helps when you start moving in the morning.

I might also wonder if I really had PMR since there are many different conditions that mimic PMR symptoms so that may be playing a part in your diagnosis.
-- Diseases that mimic polymyalgia rheumatica (PMR):
https://www.medicalnewstoday.com/articles/diseases-that-mimic-polymyalgia-rheumatica

If you are getting by without the prednisone I definitely think it would be worth a try to make some diet and lifestyle changes to see if that helps ease your current symptoms. I would also check with your doctor or rheumatologist to see if they have some suggestions. You might want to read through the following discussion to see suggestions from others.
-- PMR Diet: Foods to eat and avoid:
https://connect.mayoclinic.org/discussion/diet-and-pmr/

I can tell you my second occurrence of PMR did not last as long as I made some lifestyle and diet changes getting more exercise and eliminating most processed foods and the amount of sugar I was eating.

I think it would be great if you could handle the symptoms without needing the prednisone for the pain. Have you discussed your thoughts with your doctor?

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tillysam | @tillysam | Sep 13, 2022

I was going down 1 mg a month. I now will do 1/2 mg a month

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jillsteindler | @jillsteindler | Sep 13, 2022
In reply to @tillysam "Talk about being on a roller coaster, I was down to 6 mg when the body..." + (show)
@tillysam

Talk about being on a roller coaster, I was down to 6 mg when the body pains were quite severe. I was moved up to 10 mg and felt better. Last week I developed a stabbing headache ( nothing like the debilitating headache of GCA) and ended up in the ER. All tests were good and the physician had no idea what was wrong. My rheumatologist put me up to 20 mg and the headache went away, yet I feel awful all told. I plan to see my neurologist just to rule out anything else. I truly do not know what is going on. Any suggestions? Thanks

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I feel your pain! Literally!
I have PMR too…
Do you drink coffee? Or other caffeinated drinks? Maybe try cutting way back. Drink more water and give meditation a try…

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1 reply
tillysam | @tillysam | Sep 13, 2022
In reply to @jillsteindler "I feel your pain! Literally! I have PMR too… Do you drink coffee? Or other caffeinated..." + (show)
@jillsteindler

I feel your pain! Literally!
I have PMR too…
Do you drink coffee? Or other caffeinated drinks? Maybe try cutting way back. Drink more water and give meditation a try…

Jump to this post

Thank you. I do not drink coffee and I flunked meditation(lol). I do drink water.

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