1. < Polymyalgia Rheumatica (PMR)

PMR and exercise: What helps you?

Posted by jcaffrey47 @jcaffrey47, Jul 17, 2021

We are told that we have to stay active but what does that mean? This issue became very real for me when I attempted to swim the crawl stroke in the swimming pool. I was feeling pretty good at the time. The prednisone had kicked in and I swam the equivalent of two laps. The next day my shoulders were on fire and I was suffering a full flare; my first. Maybe everyone reading this will say that I was foolish to do any exercise that involve my shoulders and that I should limit my exercise to other parts of the body like walking or maybe biking. Let’s start a dialogue and find out what exercises work for all of us.

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

tillysam | @tillysam | Sep 21, 2022

From these entries, it looks like trial an error is the key. There is no specific remedy for everyone. The important thing is to keep trying. Only the best to all.

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flymetothemoon | @flymetothemoon | Sep 21, 2022
In reply to @marda "Some days I can hardly roll out of bed, but I'm lucky that my community offers..." + (show)
@marda

Some days I can hardly roll out of bed, but I'm lucky that my community offers water aerobics which has helped a lot. I can't walk because I'm nervous about my legs giving out, but I can do almost everything in the water. I've been trying to get off Prednisone and down to 1 mg., but my hips, shoulders and neck are very painful and sleeping at night is difficult with the pain. I wake often and last night my husband told me I was moaning. I take way too much Ibuprofen and I'm worrying about having kidney problems. I can tolerate the days, but the nights are bad. I really don't want to go back on more Prednisone and keep thinking I can put up with the pain. I see the Rheumatologist next week so we shall see what my numbers look like. These last 3 1/2 years have been troubling.

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I am having same issues. After 3 years finished with Prednisone. I don’t want to go back on unless blood tests force me to. Celebrex helps but do t want to take every night and wind up with other issues. Nightmare.

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tillysam | @tillysam | Sep 22, 2022
In reply to @sandiw77 "Hi Tilly, Thanks for your comments! I am thankful that we can see commonalities in our..." + (show)
@sandiw77

Hi Tilly, Thanks for your comments! I am thankful that we can see commonalities in our shared experience with PMR but I am praying that we will both find permanent relief soon. I am trying CBD also and will adopt your dosing strategy. Thanks for sharing that. Blessings!

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I want to make sure that if you use CBD that you check to see if there are any interactions with any medicine you might be taking. Even though CBD helped with pain I found that it did not agree with me digestively. Not sure if it is the CBD itself or the oil in the tincture. Bottom line: do your homework.

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elizabethjoan | @elizabethjoan | Sep 22, 2022
In reply to @marda "Some days I can hardly roll out of bed, but I'm lucky that my community offers..." + (show)
@marda

Some days I can hardly roll out of bed, but I'm lucky that my community offers water aerobics which has helped a lot. I can't walk because I'm nervous about my legs giving out, but I can do almost everything in the water. I've been trying to get off Prednisone and down to 1 mg., but my hips, shoulders and neck are very painful and sleeping at night is difficult with the pain. I wake often and last night my husband told me I was moaning. I take way too much Ibuprofen and I'm worrying about having kidney problems. I can tolerate the days, but the nights are bad. I really don't want to go back on more Prednisone and keep thinking I can put up with the pain. I see the Rheumatologist next week so we shall see what my numbers look like. These last 3 1/2 years have been troubling.

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I struggle with wondering why we are all so setermined to get off prednisone as quickly as possible. Surely the pain you are having indicates the high degree of inflammation in parts of your body and the effects of the inflammation may be as bad as the side effects of prednisone. So troubling.

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2 replies
connelly | @connelly | Sep 22, 2022
In reply to @elizabethjoan "I struggle with wondering why we are all so setermined to get off prednisone as quickly..." + (show)
@elizabethjoan

I struggle with wondering why we are all so setermined to get off prednisone as quickly as possible. Surely the pain you are having indicates the high degree of inflammation in parts of your body and the effects of the inflammation may be as bad as the side effects of prednisone. So troubling.

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I do sympathise with your statement of the Prednisolone dilemma. Sometimes I feel that the whole business of tapering is only meant to accustom one to enduring a constant level of pain. But the long term effects of high level Prednisolone dosage, well supported in the medical literature, are a serious deterrent to continuing maintenance. So, in my case at least, I’m prepared to wear the pain and continue the taper to complete cessation or as a second best, very low dose maintenance 2/3mg daily.

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raven1955 | @raven1955 | Sep 22, 2022
In reply to @elizabethjoan "I struggle with wondering why we are all so setermined to get off prednisone as quickly..." + (show)
@elizabethjoan

I struggle with wondering why we are all so setermined to get off prednisone as quickly as possible. Surely the pain you are having indicates the high degree of inflammation in parts of your body and the effects of the inflammation may be as bad as the side effects of prednisone. So troubling.

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I agree with your statement about pain indicating inflammation. After all, taking prednisone is all about reducing the PMR inflammation in our bodies. We all want to get down to zero but if we allow the inflammation to increase and cause more and more pain we are missing the point, which is to get to the lowest EFFECTIVE dose that will control the inflammation. An increase in pain says we've gotten a little low with the prednisone dose and need to increase enough to know the inflammation back down. It's much more important to keep the inflammation under control than it is to get off prednisone. I for one will not risk ongoing inflammation triggering GCA and risking blindness. If we can control the pain and gradually get down to a very low dosage of prednisone we can then have virtually no side effects to potentially deal with from the drug. It's also important that blood tests used for PMR are not always accurate. The most accurate indicators for dosage are the pain level and fatigue. Blessing to everyone!

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2 replies
marda | @marda | Sep 22, 2022

Well because of taking Prednisone I got avascular necrosis in my shoulder and needed a Shoulder replacement. I also glaucoma and will need to put drops in my eyes every night which I've been told forever.

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flymetothemoon | @flymetothemoon | Sep 23, 2022
In reply to @raven1955 "I agree with your statement about pain indicating inflammation. After all, taking prednisone is all about..." + (show)
@raven1955

I agree with your statement about pain indicating inflammation. After all, taking prednisone is all about reducing the PMR inflammation in our bodies. We all want to get down to zero but if we allow the inflammation to increase and cause more and more pain we are missing the point, which is to get to the lowest EFFECTIVE dose that will control the inflammation. An increase in pain says we've gotten a little low with the prednisone dose and need to increase enough to know the inflammation back down. It's much more important to keep the inflammation under control than it is to get off prednisone. I for one will not risk ongoing inflammation triggering GCA and risking blindness. If we can control the pain and gradually get down to a very low dosage of prednisone we can then have virtually no side effects to potentially deal with from the drug. It's also important that blood tests used for PMR are not always accurate. The most accurate indicators for dosage are the pain level and fatigue. Blessing to everyone!

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My Rheumatologist said pain will probably continue for a month once off prednisone. Also that pain is t always an indicator that there is necessarily inflammation. They treat the condition not symptoms. For me losing bone density and elevation of blood sugars is an issue. Nightmare cycle for sure. Hope you are doing well.

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suetex | @suetex | Sep 23, 2022

It is so different for all pf us. My primary doc (a DO and very current) told me the other day that there are genetics that some people have that make us suseptable to inflamation. (We were discussing my leg veins which have closed off spontaneously.) She said that it might account for the PMR. I also have glaucoma and one eye that is losing sight so the less pred the better. So I might end up with a small amout of daily pred and that may be ok. We will have to see.

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1 reply
christi48 | @christi48 | Sep 23, 2022
In reply to @nancybee "I have been on Prednisone for about a year. My husband and I are active bicyclist...only..." + (show)
@nancybee

I have been on Prednisone for about a year. My husband and I are active bicyclist...only on designated trails...and we are in our 80s. While on 10 mg of Prednisone I felt no pain and could cycle as much as 15 miles without major discomfort afterward. This summer (2022) my doctor weaned me from 10 to 7.5 to 5 to 2.5 mg of Prednisone. I finished it the last weekend in August and almost immediately felt major discomfort in my hips, legs and shoulders, Doctor recommended staying off the meds until the last of September and then having another blood test to determine the inflamation numbers. In the meantime I am working with a chiropractor, riding a stationary bike about 10 to 15 minutes a day and practicing an anti inflamatory eating discipline. My pain level is improving, although I fatigue easily and my mobility is better but not as "balanced" as I'd like to be. I'm trying hard to come up with a program that does not require the Prednisone. But if I need to I would go back on a low dose. Anyone else out there using chirpractor or an eating discipline?

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Not a chiropractor but definitely an anti-inflammatory diet. I'm off Prednisone and have lots of minor pain and stiffness but trying to use other things to cope - fish oil, aspirin, naproxen, ibuprofen (not all at once, of course, just experimenting with what works in certain circumstances). I long to be pain free but the risks of Prednisone are just too scary for me as I am already pre-diabetic (in spite of doing everything not to be) and have "avian bone syndrome" so any loss there is also terrifying... I wonder if I will every return to my "old self" which felt a lot younger than I do now....

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