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.

Mentor
John, Volunteer Mentor | @johnbishop | Jul 19, 2021
In reply to @cgent "Ok ... Ok ... several people have posted "like" to my comments ... but where are..." + (show)
@cgent

Ok ... Ok ... several people have posted "like" to my comments ... but where are YOUR responding comments ??? Are you too shy to mention yoga or (sex) ??? 😄😄😄
I'm looking for more comments on yoga ... I'll be teaching practices on the 28th and 30th this month when Sara flies to Texas. 3:00 PM at the park 😁

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@cgent - Sometimes there is not much to say even when you like a person's post 🙃 (nope that's not my up the wall yoga thing). Someone mentioned yoga being boring. I'm not going that far because I know folks who really love it and it does help them. For me personally, I would rather be checking my eyelids for pinholes 😁 or listening to my beard grow.

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lizzier | @lizzier | Jul 19, 2021

yeah sometimes I just sit and watch my hair grow.

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marilynredder2367 | @marilynredder2367 | Jul 25, 2021

My PMR started back in 2013. And it was really touch and go with exercise but I know for sure I was on prednisone several days before I attempted anything. There is a great website called HealthUnlocked and you might get some very good information it started in England. there are people from all over the world on this website. This is a disease more common in Europe. After three years I recover somewhat and PMR then became GCA So they went to prednisone again only doses that were higher. We are now 2021 and I am still on 7 mg of prednisone plus Actemra. More for adrenals. I would go slow with exercising and slow with prednisone reductions. I would get onto the HealthUnlocked website where they seem to know an awful lot more than we do here in the US.

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Mentor
John, Volunteer Mentor | @johnbishop | Jul 25, 2021
In reply to @marilynredder2367 "My PMR started back in 2013. And it was really touch and go with exercise but..." + (show)
@marilynredder2367

My PMR started back in 2013. And it was really touch and go with exercise but I know for sure I was on prednisone several days before I attempted anything. There is a great website called HealthUnlocked and you might get some very good information it started in England. there are people from all over the world on this website. This is a disease more common in Europe. After three years I recover somewhat and PMR then became GCA So they went to prednisone again only doses that were higher. We are now 2021 and I am still on 7 mg of prednisone plus Actemra. More for adrenals. I would go slow with exercising and slow with prednisone reductions. I would get onto the HealthUnlocked website where they seem to know an awful lot more than we do here in the US.

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Hi Marilyn @marilynredder2367, Thanks for the website reference. I will include it below with others that I've found with a lot of great information on Polymyalgia Rheumatica (PMR) and Giant Cell Arteritis.

-- Polymyalgia Rheumatica and Giant Cell Arteritis: https://www.aafp.org/afp/2006/1101/p1547.html
-- Support available for and perceived priorities of people with polymyalgia rheumatica and giant cell arteritis: results of the PMRGCAuk members' survey 2017: https://pubmed.ncbi.nlm.nih.gov/30066282/
-- Polymyalgia Rheumatica: https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Polymyalgia-Rheumatica
-- Polymyalgia Rheumatica: https://www.arthritis.org/diseases/polymyalgia-rheumatica
-- 3 Strategies for Coping with Polymyalgia Rheumatica (PMR): https://www.arthritis-health.com/blog/3-strategies-coping-polymyalgia-rheumatica-pmr

"... Cell Arteritis UK (PMRGCAuk) is a UK-wide charity set up to provide information and support, raise awareness, and foster research into PMR and GCA." -- PMRGCAuk | HealthUnlocked: https://healthunlocked.com/pmrgcauk

You nailed it with slow and easy with the exercising and with tapering also! As my rheumatologist told me it basically boils down to listening closely to what your body is telling you.

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spence454619 | @spence454619 | Jul 26, 2021

I found that while I can get in the pool, I can not actually perform swimming strokes without causing a flare. I have always been able to use swimming to rehab myself, and now even that is hindered. I have multiple issues with spinal involvement & nerve compression. Walking often triggers a flare. So I am doing modified yoga, gentle stretching, and wearing flotation belt, gentle water exercises to build tone in my ligaments before attempting a true rehab again. I can tell that my core strength is some better & my shoulders & neck are improving, but it is such slow progresss.

Still any progress is welcome.

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Mentor
John, Volunteer Mentor | @johnbishop | Jul 26, 2021
In reply to @spence454619 "I found that while I can get in the pool, I can not actually perform swimming..." + (show)
@spence454619

I found that while I can get in the pool, I can not actually perform swimming strokes without causing a flare. I have always been able to use swimming to rehab myself, and now even that is hindered. I have multiple issues with spinal involvement & nerve compression. Walking often triggers a flare. So I am doing modified yoga, gentle stretching, and wearing flotation belt, gentle water exercises to build tone in my ligaments before attempting a true rehab again. I can tell that my core strength is some better & my shoulders & neck are improving, but it is such slow progresss.

Still any progress is welcome.

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Hi @spence454619, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. You make an excellent point that all of us with PMR need to remember - listen to your body, it will tell you if you are doing too much exercise or one that is too hard on the body and will make things worse. I'm also trying to work on my core strength and it is definitely slow progress for me also. I just remember to take it one day at a time and one step at a time.

My PMR is currently in remission. How about you, is your PMR still active?

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suzorand | @suzorand | Jul 27, 2021

I”m 14 months in, got off the prednisone for one week and boom it was back. Pain, neck and shoulders and hips and groin. Back on 5mg., start again. I’m 70, been surfing since I was 13. Throughout it all I continue to surf with some severe shoulder and groin pain making it hard to even stand up. But I’m not giving up now, just keep on driving at it, having some really bad days and then some good ones. But each time I get out the pain decreases and I feel better for hours. I think moving and working the muscles actually helps the pain significantly. I’m looking for a good easy PMR Yoga workout now. Can anyone suggest one?

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bcool123 | @bcool123 | Jul 27, 2021
In reply to @cgent "My PMR was diagnosed in January and since then I've tapered down from initial 40 mg..." + (show)
@cgent

My PMR was diagnosed in January and since then I've tapered down from initial 40 mg Prednisone to just one mg. recently, but find myself waking with a vague all over stiff and painful feeling. I'll try going back to two mg. today. Since I first was diagnosed I walked every day, first just a bit then regularly 2-3 miles every day. Also YOGA every other day. Made a mistake and did 6 1/2 miles one day about two weeks ago and paid for it with a pulled muscle inside my left thigh. I had walked too fast and too far and left knee hurt like heck, couldn't walk on it all all at first. Now it's nearly healed and things are getting back to normal. I can walk almost normally now again. The important thing here is the YOGA !!! I've practiced and taught yoga for several years now and I'm convinced of it's benefits. Pay no attention to the pictures of 20 something sleek gals doing impossible things with their perfect bodies. Try yoga as a beginner ... maybe just mastering calming breathing in the beginning ... maybe in a chair if sitting on the floor is a problem. Learn both to stretch and to relax. Find a good local teacher, if that is impossible, go on YouTube, search "yoga with Adriene" and follow her lead ... she is fantastic !!! Then try her practice for a specific thing, such as yoga for legs or yoga for back. But please try yoga ... it's been so good for me both mentally and physically. After practicing about ten years, averaging four one hour practices a week, I now can do a headstand, and can do all the balance poses rather well. BTW, I'm 76 years old, pretty average, retired from retail business, and a Vietnam vet. Thanks for listening.

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I have been doing chair yoga with Adrian for about a month. Didn’t know she offered other options. I will check that out. It helps me physically, mentally, and emotionally

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cgent | @cgent | Jul 27, 2021
In reply to @bcool123 "I have been doing chair yoga with Adrian for about a month. Didn’t know she offered..." + (show)
@bcool123

I have been doing chair yoga with Adrian for about a month. Didn’t know she offered other options. I will check that out. It helps me physically, mentally, and emotionally

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Durn it ... wish we could all get together for a yoga practice. I teach a class here in Winchester, at the park at 3:00 tomorrow afternoon 😁
Adriene is so fantastic at teaching ... next time go to YouTube and try "yoga with Adriene for chronic pain" ... or maybe "yoga with Adriene for shoulders" ... or for whatever else is bugging you that day.
Another strong suggestion I have is that you check out your local area, maybe the YMCA or another fitness group for yoga classes.
BTW ... my PMR pains seem to be returning☹️ ... I'm down to just one milligram this month and maybe off Prednisone next month but I'm afraid it isn't going to be that easy.

I wash, dry, and wax my car ... keep 2 1/2 acres mowed ... walk 1-3 miles daily. I feel pretty decent moving but when I sit down to rest I get awfully stiff in the legs, fanny, and shoulders. I use a bit of Tylenol ... just 3 500mg capsule a day.

Get back to me if you want to talk yoga ... 🧘

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bcool123 | @bcool123 | Jul 27, 2021

Thanks for the suggestions about Adrian and I will do that tomorrow. Proud of you for being able to do all the things you can do… Mowing 2 1/2 acres of lawn! Hope you can continue with that. Sorry I won’t make it to yoga class tomorrow… I’m in Colorado!

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