exercise tips

[Pastamama]

Morning folks ,

was on 15g pred initially with PMR diagnosis, after a couple of weeks and around 60/70 % pain relief , had a weekend of weird symptoms in my head . As a precaution was put on 40g pred awaiting blood results . My CRP was 17 , the GP said in an ideal world it should’ve gone down to less than 3 after 2 weeks on 15g pred .Appointment made with rheumatologist, he did an ultra sound scan ,no signs of GCA ( I believe to be expected as have been on steroids ) . His suggestion going forward is to stay on 40g pred for the next month . Pains disappeared on this dose apart from residual pain on tops of arm , this too had gone by yesterday .Have rested more then anytime in my life apart from bad backs ! Been moving around hospital visits , bit shopping , gentle walk ,usual stuff .

Decide to up the ante a bit yesterday.Increased my walk distance , used walking poles , got a bit of cardio going up hill . On waking this morning no discomfort, now starting to potter around , stiff both sides of my butt and tops of arms .

Normally would ignore this and think been doing more then normal exercise so expect to feel like this .

My question , is this bad for nursing an inflamed body , if that makes sense ? Obviously we all have to keep moving and get the ticker going !I would assume this is to be expected as muscles would ache as have hardly been used and to carry on .

Having taken note of the mantra rest, of which I have been doing big time , I don’t want to jeopardise assisting recovery by being gung-ho .

Another how long is a piece of string question I guess .

Thanking you .

[Sophiestree]

when I was diagnosed I was on a 3 day pulse therapy of one gram per day and then 40 mg daily and was buzzing. Having gone from not being able to walk from the sofa to the kettle I was running around all over the place. And then bam! Every muscle complained and I couldn't do anything for 4 months. The pain was so great I was nearly suicidal. So I am so careful now I don't risk anything like the same level. I'm probably extreme but it is constantly in my head. I try and walk as much as I can and walk my dog 5 days a week (I have a dog walker the other 2 so she gets a decent run). But I totally know when to stop and do. So I think I'm saying be cautious. And take baby steps.

[Pastamama in reply to Sophiestree]

Thanks for comment Sophiestree . At my worse before any diagnosis, I was majorly stiff in the mornings , ie difficulty getting out of bed , putting bra on , getting things out of cupboards , sitting down , but could do it . It would ease off slightly in the afternoon, could manage walks , bit of hoovering etc , but think I naturally scaled down . As you said on a higher dose could’ve gone out and dug my garden ! Than goodness for this forum , in particular PMRpro and D.L .As advised by rheumatologist to carry on as normal . He had no idea of my previous life style , and didn’t ask . Presume he didn’t notice I live on a farm ….

[DorsetLady PMRGCAuk volunteer]

Sounds like it could be DOMS [delayed onset muscle soreness]. and yes you should be doing exercise, but you do need to build up gently -

healthunlocked.com/pmrgcauk...

Plus have a look at this booklet from charity - Maintaining movement, activity and exercise with PMR-

pmrgca.org.uk/information-a...

[Pastamama in reply to DorsetLady]

Thank you , will check the links .

[PMRpro Ambassador]

If you were using your walking poles you probably did a lot more all of a sudden - plus your arms and shoulders were a lot more involved than if you were just walking. I think what you are feeling is DOMS - delayed onset muscle soreness - and it is a warning to take a step back and take it easier to start with,

We suggest starting with just s short wall -5mins out and 5 back with a rest day next day to assess. If you feel fine, not even a twinge, then you can add a minute or two each way the next day - BUT NOT MORE!!! Rest day and assess. Keep doing that until you get a day like you have now and go back to the previous level ONCE THE SORE MUSCLES HAVE GONE! Never exercise on top of sore muscles, you will just make it worse, prevent the microtears that cause the pain from healing and create a viscious circle.

It sounds slow, it isn't slow if it works and the length of walk mounts up surprisingly quickly. YOu can do something different on the rest day - if you are just walking rather than Nordic walking, you could do some bicept curls on the rest day to work different muscles. Same prinicple applies there, only use very light weights such as 500ml plastic water bottles with some water in (NOT full!) rather than weights as such to start.

Most doctors are only too aware that farmers have a difference reference chart to the rest of the world!!! And I imagine a bucket is your usual weight, not a 500ml water bottle!! So the gentleman was in HIS own world ...

[Pastamama in reply to PMRpro]

Wise words as ever , makes sense re the DOM , a visual on microtears , mustn’t make those microtears🥲! You’re absolutely correct usually a bucket . Big thank you

[SnazzyD]

while I was on Pred I couldn’t use walking poles; an absolute killer. No rucksacks either, not even a shopping bag until I was way down in dose. By then I had to work up to those but SLOWLY. This isn’t a case of getting back on track like after a couple of weeks off with a bad cold. Your disease is ongoing and you are also on a powerful but very helpful drug that makes your muscles and ligaments less happy about exercise, especially repetitive. High doses shut off all your normal feedback for over doing it too, so the mantra, “listen to your body” falls short because the Pred has a gag over it at the moment.

The string is long, I can tell you that. On high doses until about 10mg I just did daily walking but no cardio bursts or ideas about whipping the body into shape like many of us have been used to. I made sure I always walked upstairs to use the loo and did a flight or two of stairs before using a lift when out. You may be distressed if like me your muscle bulk disappears due to the Pred but that can be a fact of Pred life. Belting out some weights won’t help. It is important to keep range of movement though

[Pastamama in reply to SnazzyD]

Many thanks appreciate your response .muscle bulk been well covered with padding for a while so hopefully I won’t get upset !

[piglette]

The mantra for PMR is rest, rest, rest. PMR can be life changing.

[Pastamama in reply to piglette]

👍

[Freshairfiend]

as well as PMRGCA exercise booklet, I have found Qi gong and chair yoga very helpful. I can do the qi gong seated if I wish and even in my imagination- apparently that is very beneficial. I do qi gong thru an online class and chair yoga in person. There are ninety year olds there, I feel like a spring chicken sometimes, 190 at others! All the best.

[Bluepin]

good morning pastamama,

I was diagnosed with PMR in July 2022. I was on 15mg pred daily, now tapered to 4.75mg.

I may be an exception but I find that when I do a little more exercise my stiffness improves . So I have joined the gym and only do 30-40mins using a mixture of treadmill and light weights on the various machines .

Also I started cold water swimming in November, and I must say that this helps immensely to relieve my stiffness! ( once I have warmed up that is )😂😂

[PMRpro Ambassador in reply to Bluepin]

It isn't uncommon to find stiffness improves with exercise - even gentle stretching in a warm shower in the morning can make a difference. Not so sure about cold water swimming for everyone - I find even a cool pool can make me seize up! But if it works for you ...