Big Thankyou!

[Jigsawlass]

I posted about Fatigue with PMR recently and was so grateful for all your helpful responses. I have recently done 2 leisurely walks and am working out my new walking limit distance-wise ! I guess it's trial and error ...5 miles ( a norm for me pre-PMR) felt like 15 🙄. I am hoping to restart online Pilates for short sessions now my pain is under control.

[PMRpro Ambassador]

Well done!

What ever level of Pilates you were at before - forget that. You start as an absolute beginner - and talk to the instructor so they take the PMR into account. Mine was very good about it

[Jigsawlass in reply to PMRpro]

The Pilates I am doing is an online NHS for beginners, advised by my physio at the Royal Marsden where I had ongoing physio for scar tissue/core strength after a Mastectomy and reconstruction using my abdomen . I have only been doing 20 minutes max a couple of times a week . I will only try a few minutes to start

[PMRpro Ambassador in reply to Jigsawlass]

And just a few reps of each - build up the quentity of each exercise slowly too. Not sure I approve of that - doing the things correctly needs an instructor to look at what you are doing. Though if you have done it before you should be OK.

[Jigsawlass in reply to PMRpro]

Thanks, the video is excellent and I found really helpful when I did it before. The exercises are v basic and the ones I do I had previously done with my physio

[PMRpro Ambassador in reply to Jigsawlass]

Is it generally available or must you have a link from your physio?

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

This is beginners one -but just go to nhs site and find different ones. I may include in my exercise post in FAQs with proviso to check first -

nhs.uk/conditions/nhs-fitne...

[Jigsawlass in reply to DorsetLady]

That's the one ! Thanks for sharing the link 😀

[DorsetLady PMRGCAuk volunteer in reply to Jigsawlass]

No probs😊

[Kendrew]

Hi Jigsawlass,Similarly to the advice Pro offered regarding the pilates.....you need to apply the same principle to your 'walking'!

I would have found a five mile walk completely manageable prior to my PMR diagnosis, but since diagnosis it would be completely unmanageable, and quite frankly for me, would have proved somewhat reckless!

I literally started with 10 to 15mins outbound and therefore 10 to 15mins back. I had to gradually build up the length of my walk but because you don't necessarily consistently 'improve' there are still days when I know I need to shorten or tweak the walk. It's imperative that you learn to gauge your capability on a day to day basis because what you can achieve on one day won't necessarily be what you can achieve on the next. Unfortunately, 'pushing through' doesn't work with PMR/GCA either, so I don't want you to feel deterred in your efforts but in order to make any sort of progress ....without causing a flare.... it has to be slow & steady all the way.

[Jigsawlass in reply to Kendrew]

Thanks, this is really good advice and I will try to take it on board . I was shattered after today's walk....lesson learned . I took myself to bed once home . It's all a lot to take on board , so I'm grateful for any hints and advice from this lovely community 😊

[PMRpro Ambassador in reply to Jigsawlass]

And have a rest day tomorrow - to recover. That is as important as the exercise!

[Kendrew in reply to Jigsawlass]

One of the most important pieces of advice I was given, was that your exertions mustn't cause more inflammation than your steroid dose can maintain control of. Steroids don't cure the condition, they simply 'manage' the inflammation, so you have to be mindful of that at all times.

You'll soon become familiar with what works for you and what doesn't and there's lots of reliable information, support and advice here...... you can ask about literally anything that's concerning you and someone will always respond.

[Jigsawlass in reply to Kendrew]

That piece of advice seems key !

[Kendrew in reply to Jigsawlass]

👍👍👍

[Sharitone]

5 Miles! Wow! (So jealous!)