1. < Polymyalgia Rheumatica (PMR)

Exercise is so important

Posted by tiateacake @tiateacake, 3 days ago

Last year when this all started for me I thought my endurance exercise days were over. I got told only do gentle exercises, which I did do at first, but after a few months I realised that advice was wrong, well for me anyway. Listening to my body and making sure my immune system is happy with a healthy diet, good amount of sleep which a Vit B supplement has helped and lots of exercise which in turn makes me happy. My month long endurance challenge at the moment is nearly over (thank goodness). Struggling a little with it now and can only manage 20000 metres a day on rower or skierg. But I should finish high up the list and then spend the next few months getting fit and strong enough to do it again. I will be on 2mg next week and apart from that silly third day feeling I don’t think I will have any problems.
I use STRAVA on my phone for my exercise and even just dog walking. So I thought it would be a good idea to start a group on there for people with PMR. I have called it Beating POLYMYALGIA. So please join me on there, even if you just go for a gentle walk, jog, swim or gym session. Even gardening, shopping etc counts as you are still moving. Just make sure it is logged on STRAVA. Hopefully we can support each other through exercise.

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

leeta | @leetaanderson | 1 day ago
In reply to @dadcue "What is a good device these days? I have a smart watch but I don't use..." + (show)
@dadcue

What is a good device these days? I have a smart watch but I don't use it anymore. It mostly counted my steps and said how well I slept. I knew that I wasn't sleeping well at night while I slept too much after any exercise.

My steps were a joke because I was using a rollator and I wasn't getting credit for any steps. I could sit in a chair and wave my arm back and forth and get credit for a thousand steps in no time at all.

I mostly do aquacise now. I would like to get some credit for doing aquacise but I don't know how water resistant those smart watches are.

Jump to this post

I use my Apple watch when I’m doing laps in the pool. It has a feature to expel water after the workout, and so far works beautifully. Like you, I want credit for my good work!

REPLY
1 reply
debbiebas216 | @debbiebas216 | 1 day ago

I looked up STRAVA and there are 2 versions…free and $11.99 a month. Which one are you on?

REPLY
1 reply
jeff97 | @jeff97 | 1 day ago
In reply to @debbiebas216 "I looked up STRAVA and there are 2 versions…free and $11.99 a month. Which one are..." + (show)
@debbiebas216

I looked up STRAVA and there are 2 versions…free and $11.99 a month. Which one are you on?

Jump to this post

I only use the free version.

REPLY
1 reply
tiateacake | @tiateacake | 1 day ago
In reply to @jeff97 "I only use the free version." + (show)
@jeff97

I only use the free version.

Jump to this post

I only use the free. I ignore Apple when it try’s to sell me fitness +.

REPLY
tiateacake | @tiateacake | 1 day ago
In reply to @leetaanderson "I use my Apple watch when I’m doing laps in the pool. It has a feature..." + (show)
@leetaanderson

I use my Apple watch when I’m doing laps in the pool. It has a feature to expel water after the workout, and so far works beautifully. Like you, I want credit for my good work!

Jump to this post

I still shake my head in disbelief when I remember I had Watch set on 20 metre for a 25 metre pool. A good few weeks of wondering why I was getting slower.

REPLY
gmdb | @gmdb | 12 hours ago
In reply to @dadcue ""I agree that exercise has been very beneficial while being sick with and receiving treatment for..." + (show)
@dadcue

"I agree that exercise has been very beneficial while being sick with and receiving treatment for GCA and PMR. It has helped me limit weight gain from the prednisone, and has also helped a lot with my mental clarity and mood. Plus I was able to maintain functional strength for everyday activities."
-----------------------
The experts of the other forum certainly don't stress exercise. They warned that "delayed onset muscle soreness (DOMS) was caused by PMR." DOMS is normal after exercise after a period of inactivity if you ask me.

"Delayed onset muscle soreness (DOMS) is the pain and stiffness felt in muscles after strenuous or unaccustomed exercise. It typically develops 24 to 72 hours after exercise, peaking around 48 hours."

Their advice would be more prednisone for DOMS so I'm not so sure the experts on that forum are medically sound. I mostly didn't like how they gave medical advice. They shouldn't claim to be experts and entitled to know things no medical expert would claim to know. Not that much is known about PMR/GCA because of the limited amount of research that is available for PMR/GCA.

Sorry for the rant. In any case ... I didn't need their advice to take it easy, avoid exercise and I should take more Prednisone for niggles of pain. I had the first part perfected without their advice but I didn't take more Prednisone for niggles.

Jump to this post

I thought they suggest that DOMs does not respond to prednisolone. I envy the people on this post undertaking extensive exercise programs with PMR. It seems they don't experience any DOMs complications with their illness. Small amounts of exercise - especially repetitive - leave me with a high level of pain for more than a week. I walk 20 minutes a day and do 20 minutes of slow stretching exercises, (and that's about the current limit) and still run a small business which involves lots of repetitive steady movements of the small muscles (e.g. soldering). Initiall it took around 3 months after the onset of PMR for me to regain those skills. But none of the work involved can be done for more than 15 minutes at a time - or DOMs will hit for more than a week - and extra pred doesn't help. Sometimes paracetamol can be effective.

REPLY
1 reply
DadCue | @dadcue | 9 hours ago
In reply to @gmdb "I thought they suggest that DOMs does not respond to prednisolone. I envy the people on..." + (show)
@gmdb

I thought they suggest that DOMs does not respond to prednisolone. I envy the people on this post undertaking extensive exercise programs with PMR. It seems they don't experience any DOMs complications with their illness. Small amounts of exercise - especially repetitive - leave me with a high level of pain for more than a week. I walk 20 minutes a day and do 20 minutes of slow stretching exercises, (and that's about the current limit) and still run a small business which involves lots of repetitive steady movements of the small muscles (e.g. soldering). Initiall it took around 3 months after the onset of PMR for me to regain those skills. But none of the work involved can be done for more than 15 minutes at a time - or DOMs will hit for more than a week - and extra pred doesn't help. Sometimes paracetamol can be effective.

Jump to this post

I believe DOMS is associated with inflammation but I'm not an exercise physiologist. It isn't that DOMS won't respond to Prednisone. It just isn't appropriate to treat DOMS with Prednisone. I don't think DOMS is a complication of PMR but it is a complication of inactivity or doing a new type of activity.

I might have misunderstood what they said. It just seemed like they were telling people to increase their prednisone dose when the reasons were not always clear that it was PMR. It might be DOMS, an injury or something else. They would give medical advice sight unseen and they weren't qualified to do that. It just undermines the relationship people have with their health care providers. I'm sure their intentions were good.

REPLY
View MoreView Less
Please sign in or register to post a reply.