I am posting an update and a question. Since discovering I have PMR in Sept 2023 and starting on Pred at 15 mg, I have had a slightly bumpy start to my PMR journey. Was getting used to being on Pred when I had a visit from the Covid fairy which took a couple of weeks to clear, but I still feel I have hoarseness deep in my throat. For a while I didn’t try to do any exercise or push myself in order to give my system a chance to recover. I had 4 weeks on 15 mg and have since had nearly 4 weeks on 12.5 mg. Things seem to have been going ok. I had my flu jab with no ill effects, taking paracetamol as advised. Am due my Covid jab next week and a first shingles jab a week after. Have been trying to do about 1 - 1.5 miles walk on odd days to start building up my strength again and a few days ago I tried a few gentle exercises. I’m still getting used to not being able to do what I used to do. Some days I have more energy than others and I try and regulate my activity accordingly. I do want to try a rebuild my fitness gradually, but I find it difficult to know sometimes how far to push things. I started getting problems with aches in my hips and thighs in 2022 when doing physio exercises for my osteoporosis. The aches didn’t happen straightaway, but at night in bed. Earlier this year, I saw the physio again and she said I have Trochanteric bursitis and gave me some different exercises to do. I was trying to do those when I started getting the pains and swelling from PMR, so was unable to do any exercise at all apart from a bit of walking. Now I’m starting all over again with exercises and I don’t know how to progress. I did 1.5 miles yesterday and felt ok, but had aching in left hip in bed last night, which I think is probably the bursitis and not PMR. Before all the spinal fractures and bursitis and PMR etc I was reasonably fit, but not athletic and I did a 1.5 hour weekly Hatha yoga class. Even earlier this year I could do an occasional 6-7 mile coastal walk. Unsure how to proceed as I still need to save some energy for doing day to day housework etc. Sorry for the long post, but advice would be appreciated. Thank you.
Exercise and PMR: I am posting an update and a... - PMRGCAuk
Exercise and PMR
Now you have written this there are plenty of related posts to look at..but main message is little and often… so rather than 1-1.5 miles in one go… much shorter walks but maybe 2 or 3 times a day [not always as convenient, but better for PMR affected muscles]
Also have a look at this -
healthunlocked.com/pmrgcauk...
Thank you DL. I’ll try and break things up a bit and do some smaller sessions. I believe I’ve read somewhere else about exercise snacking. Doing a few exercises whilst waiting for a kettle to boil etc. Maybe that would help. I used to do 1.5 miles round trip to the village every day without a thought. Its a job to reconcile that I can’t do that now.
I know it’s difficult and frustrating - but in time you will get back to previous fitness. But as we say [and appreciate it’s boring to hear 😉] - you need to build up fitness and strength slowly…and yes ‘exercise snacking’ is a good idea - often suggested after joint replacements and osteoarthritis in general [too experienced on both!]
I found/find Pilates a good option, started during GCA [did yoga before, but had to give up whilst undiagnosed] and have continued with it since through 3 joint replacements…
" I still need to save some energy for doing day to day housework etc"
Ah - well there we differ! Housework is lower down the list and I have a cleaner one hour a week to do the things I really struggle with - vacuuming is an absolute no-no. Dust is very patient - it will always wait. And the gift to yourself of a cleaner is worth it.
Pacing is the absolute key to living well with PMR and there are good links in this post:
healthunlocked.com/pmrgcauk......
You will manage the round trip to the village again. That is about the round trip to the other end of my village which I do manage regularly - sometimes with a stop at the cafe for a drink in the sun, That does make a big difference to how far I can walk - short bites with regular rests adds up to being able to cover more distance, When my husband was still able to walk we used to walk to a local restaurant, have a long leisurely lunch and walk home - which was downhill! No way I could have managed the distance all at once but split like that I could.
I, too, have trochanteric bursitis as part of my PMR and it often is more limiting than the PMR. It is a conundrum, you want to walk gently for the PMR, the TB says no, don't like that! If you are offered a steroid short for it, take it, it gives me peace for months. Unfortunately, the Pain Clinic is being stuffy about it because I am on anticoagulant therapy too,
I also do a weekly aquafit class through the local rheuma charity - joints and bursae protected by the action being in the water. Unfortunately they are a bit thin on the ground here but when I lived in the UK I had an off-peak (daytime Mon-Fri only) membership at a gym with a pool and daily aquafit classes after which I was able to also manage Pilates and even Iyengha yoga - all included in the price.
I have been reading a lot on this forum and trying to take it all in. Covid threw another spanner in the works, which didn’t help. I am slowly learning when I can do things and when I can’t. I know I need to do exercises and walking to help with my osteoporosis, it’s a matter of balancing things out that I haven’t got to grips with yet. Meditation has helped with the acceptance of how things are now. Thanks to all for your sage advice.
P.S. Please don’t think I’m houseproud. The dust does build up and gets left. Hubby generally helps me out with cleaning and I break things up into smaller blocks. Downstairs is easier as we have tiles and I can go over the floors with a GTech without too much difficulty. I did look at Lakeland to try and get one of those extending cleaner brushes that you can charge up, but they don’t seem to do them any more. I’ve always tried to look for the easiest way of doing housework as its never been a favourite pastime.
PMRpro has given you her excellent link on pacing yourself. That really is the major thing to get a grip of…when you can put that into action (and it’s not easy to begin with) it really is a game changer
Nothing to do with exercises - you’ve had good advice- but something you may like to consider is a mattress topper to relieve hip pain and improve quality of sleep. Prices vary but you don’t need to pay the earth. ‘Egg crate’ designs are good with depth of topper 3-5 cms. Just a thought 🙂.
PS. I’m not a mattress topper seller 😂.
I indulged in a similar topper and it has made such a difference.
Mine worked a minor miracle ☺️.
When I first had problems with my back due to the fractures, we got a wool mattress topper and then later when bursitis reared it’s head, we got a thicker wool one and put it o top as well. They do make a big difference, but I think if I’ve done too much during the day it comes back to bite me at night. This used to happen pre PMR as well.
I’m pleased your toppers have made a difference. The thing to concentrate on is pacing your activity level and hopefully then you’ll see an improvement, I’m sure. 🤞
(I’ve never been house proud but did like to keep on top of things with a kind of routine but since PMR diagnosis my priorities are clean clothes, clean kitchen and bathroom and the rest as an when. I don’t have ‘days’ for doing chores - there’s always tomorrow- and I often wonder why I ever thought it was a good idea to go through the whole house on a Friday night after work!! A colleague once gave me a tea towel on which she’d embroidered the words, “Slow Down!”).
I used to have a loose routine, but that went by the board in August when I couldn’t do anything. Now I try to focus on kitchen and bathroom, but not all at once, and then fit other things in piecemeal. And I only iron the things that absolutely need it.
My iron is almost redundant.. almost!
Mine too!
I often wonder why I ever thought it was a good idea to go through the whole house on a Friday night after work
Remember those days -bonkers when you look back… 😳
I used to do it all on Saturday mornings. Long since let that go by the board.
Trouble is, when you have a full-time job you don't have a lot of choice..do you?
No, you don’t. I used to do washing on Friday evening ready to hang out first thing in the morning. Cleaning Saturday, ironing Sunday morning, ready to start all over again on Monday.
I can remember my (then) teenage daughter saying to her dad when I was in the middle of hoovering - “don’t ask her that, you know what she’s like on a Saturday morning!”
Over the years I’ve had great pleasure in reminding her of that - particularly when she still had both her strapping lads at home and OH is a farmer!
Sure was!
Hi Indigo2417,
It's so frustrating isn't it? I know how you feel. Like so many of us here, I was healthy, fit & active before PMR hit.
Over the 4½yrs I've been managing my PMR, exercise has been an important component of maintaining some degree of physical health, but its been a real roller coaster of success and failure in terms of gauging what I was & wasn't capable of doing.
In the beginning, I'd frequently overestimate my capability and then spend several days living with the consequences!
Currently, I go to the gym every weekday and do gentle exercise on the treadmill and some gentle weights or resistance work. I've found that if I try to push myself by increasing the weights, it doesn't actually build more muscle, it damages the muscles more.
My exercise regime is all about maintaining the strength and muscle mass I have, maintaining my heart health and keeping my joints as flexible and mobile as sensibly possible.
I also do 'yoga for osteoporosis' and go for a walk around the meadow and river that I'm lucky enough to have on my doorstep.
As you also suggested.....there are things you can incorporate into your daily living. When I'm ironing, I frequently move up and down on my tiptoes (very good for calf muscles) I've been known to do sofa squats during the TV ads and chest presses (push ups) against the wall.
Even 5mins of hoeing in the garden (not the father Christmas kind- Ho Ho Ho!!😂) will do you some good.
It's all about recognising your own limits and exercising accordingly. If you feel worse afterwards then that's probably an indicator that you've overdone it.
If I'm unwell for any reason, I may give the exercise a miss for a few days and then begin my workout very slowly & gently when I return, gradually building up to where I was originally.
Having PMR doesn't mean you can't exercise, but it does mean you have to 'tweak' your regime for a while and be very patient.
You'll figure out what works for you eventually.
Have a look at the Nuffield Joint Pain programme, if you have a Nuffield 'gym' nearby. Several of us on here have completed the free 12 -week programme, which also gives access to the pool and the facilities as a whole. You would be assessed beforehand and afterwards to see what benefit you had gained.
nuffieldhealth.com/about-us...
Whatever you decide to do, pacing is key, as you are so recently diagnosed. I have completed the programme, but 7+ years since diagnosis and on a very low dose of prednisolone (4 - 2.5mg over the 12 weeks of the programme.)
All the best.
Good suggestion. I did come across this programme pre PMR, but my nearest centre is about 65 miles away and I feel that might be a bit too much at the moment.
Definitely too far to go ! The sessions are twice a week for 12 weeks and with the option of using the other facilities on any other days, it's a no-no for you. Shame! Stick to your walks and physio exercises at home and perhaps a local gentle Pilates class.
I had trochanteric bursitis many years ago, the only solution was a steroid injection directly into the area. Physiotherapists these days think everything can be solved by exercise, the Pilates or McKenzie type in particular. But there are some aspects of pain where there is inflammation that it can't cure until the inflammation is gone.
That could explain why I never seemed to be able to get going with the exercises she gave me.
Quite possibly. You need very gentle exercises at first until the inflammation has gone or you just make things worse
Reminds me of a funny story. I overheard a conversation recently which seemed to be between a grandad and granddaughter. He was saying how much he hated ironing his shirts. The young lass said 'why do you wear shirts? People buy things that don't need ironing these days'. I smiled because it's true, I've hardly done any ironing since I finished work, only the odd thing for a special occasion or bedding for rare guests! Maybe it's easier for us women, as we can wear tops, leggings, trackie bottoms, fleeces 'leisure wear' etc most of the time LOL. Or have I just let myself go LOL
I’ve never ironed sheets except when someone bought us some cotton ones when we got married. Then I folded them in four horizontally, so that the turn down bit was uppermost and just ironed that. Now we’ve got linen ones that are fashionably crumpled. Someone I worked with only ever ironed the front of her husband’s shirts because he wore a jacket at work and no one saw the back. Can remember my lovely mum ironing everything, bless her, but that is how she was brought up. I always looked for the shortcuts.
We certainly have it a lot easier nowadays - most fabrics don’t need to be ironed nor boiled with new washing detergents etc [like cotton sheets in days gone by].
I can remember my auntie teaching me how to iron shirts before I was married [she obviously thought I needed to know] - did come in handy, but I detested ironing hubby army shirts [summer and winter varieties] when they wore proper uniforms and not ubiquitous combats they sport nowadays.
That's what my OH does, people only see the front!.....My MIL used to iron teatowels!.......and as PMRpro has said. .dust if you must......why must you?......
Er - I iron teatowels 
They dry better and lie nicely on the shelf. And ALL my bedding is pure cotton - not sheets, they are stretch jersey. I find ironing a relaxing pleasure in small batches with something decent like sport on TV - the ironing board is never taken down as putting it up is the worst bit. I used to leave it in front of the TV but now the spare bedroom makes it look tidier.
No, have never a nd will never iron a teatowel!....mine are shoved into a kitchen drawer .I have a very light steam iron, but it still hurts my arm.
Bit low on kitchen drawers me!!! Cutlery, plates etc and pans - that's your lot!
I don’t iron tea towels either. If they are given a shake and dried outside, they’re not too bad. If they’re dried in the tumble dryer, they go a bit wrinkly down the edges, but I shove them in the kitchen cupboard out of the way. Hubby would think I’d taken leave of my senses if I ironed them.
Yes, everything dried outside if possible or in airing cupboard, I’m so old fashioned! but it works for us..
A spell on a washing line outside on a breezy day will get rid of a lot of creases, but I do finish off towels in the dryer afterwards, otherwise they turn into cardboard.
Ok never had one.
It does fluff the towels up nicely, but I ration it’s use due to the electricity bill.
And in Wales a dryer does help.
I use a plain fan with hanging washing on the balcony - works a treat. So much cheaper than a tumble dryer.
That’s a good idea.
Don't know what I'd have done without the balcony which has a roof over. Even in winter things either freeze-dry (it does work and the stuff irons like a dream!) or the fan blows it dry so quickly. In summer things can be dry in under an hour.
PMR can be life changing. We set up a gardening group recently for people with PMR and/or GCA which may be of interest if just to look at the lovely photos. facebook.com/groups/6288051...
Thank you. I’ll take a look.
I had PMR diagnosis in Aug 23 and was also a very fit 57 Yr old who was running daily. I started to walk again for fitness and increased from a mile a day slow and increased 300 steps a day from 2000 steps to now am on 9000 a day . Take it easy and listen to your body. Be close to home so if you do feel any pain you can get home quick. Its a long journey so may as well get it right. All the best to you
Thank you. I’ve never been a runner ( except perhaps for a bus 🙂) but I could manage moderately strenuous uphill climbs before. With the bursitis, I do find I have to be careful as well as taking into account the PMR. But, I know I need to do something for the osteoporosis. It feels a bit like Catch 22 at the moment. I do quite a lot of steps just going round the house doing day to day things and I try not to sit for too long a period without getting up and having a little walk round. Some nights, if my hips start aching or legs occasionally start twitching ( restless leg syndrome ? ) I have to get up and do a few laps round the bedroom or in the kitchen. Perhaps I should get a Fitbit.
My iPhone counts steps - I'm told by a friend it underestimates compared to her rather fancier step counter. Just make sure it is in your pocket ...
I read recently 10,000 steps was a mistake, and 6,000 is plenty, good news!.....
Not so much a mistake as one of these figures plucked out of thin air like bone density! It was when a pedometer was being marketed! It is something like 2,500 for the first health benefit and it rises thereafter. Reduction in all-cause mortality is at 9,000 and cardiovascular mortality at 7,000.
I do check my phone, but I don’t carry it round the house all the time. Don’t always have a pocket handy.
We do have stairs, so I guess going up and down stairs a few times a day is good.
I wear jeans ...
So do I, but I’m afraid of putting the phone in my back pocket and sitting on it.
Front pocket for me
Hi, you have had many good responses for this interesting post. I just want to know where swelling from PMR is? What joints? It is not usually a PMR symptom, but I too have swelling on hand and feet and even knees
It started off as swelling in my hands and fingers and came on quite quickly and unexpectedly. It got so that I could barely move my fingers. Was advised to try ice packs and these helped. I also had some spells of shivering, at first. A bit like flu. Then, for a couple of days, my feet swelled and were painful, so that I could barely walk. In between times I got the pain in my back and shoulders and a stiff neck and periods of extreme tiredness. It seemed to pop up randomly over a period of about 4 weeks. Since being on the Pred, I haven’t had the swelling. I am still getting aches in my hips and thighs and also in my back, but I am inclined to think that that is due to the bursitis and to the fact that I haven’t been able to do exercises for my back and it has got a bit weak again. And of course, Covid didn’t help either.
I have had PMR 10+ years and never had too many major issues until just over 2 years ago was admitted to hospital with borderline sepsis which totally floored me and left me having to use a walker to get around now. I am trying to build up my strength and improve my mobility. To this end I was referred to a movement and balance group run by my GP surgery. It's only low level exercise and resistance and can be done seated or standing.I expected to have some stiffness and aches afterwards but it feels like it's caused a flare with my PMR. Everything aches, shoulders, back, neck and legs.and can hardly move around. Now I don't know whether to continue or whether my body isn't ready yet. I am currently on 15 mg of pred.
Speak to the leader and drop the intensity as far as possible. Personally, when we have been really bad I think we need to start with hydrotherapy, in a pool. I had a few sessions and then she told me to join a class run by the local rheuma charity. I was really worried but it was fine.
Ooh your experience sounds really bad. It does feel a bit like snakes and ladders doesn’t it? One day you try something the next it floors you. All the best to you.
I recently completed 12 months on Prednisone dealing with PMR. I am now down to 3mg. Exercise at first was very limited. I try to do stuff every day. The big thing we forget is that during the long progress of getting diagnosed and starting to heal, our exercise was very limited. So, we basically start back from scratch. We're lucky to do 10-25% of what we remember doing, and we start back from there. After a year, I'm pretty close back to a lot of stuff, but there are many parts of my body that are still ignored and very weak. Just keep at it. Do it often, and start at zero. The start slow is misleading, as we really start from ground zero, at least those of us that hit rock bottom before getting diagnosed.
Hello. I have had PMR since September 2022. I started on 20 mg, reduced to 15 after one month and then to 12.5mg one month later. I found I could exercise as much as I ever could as I don’t have other injuries to consider. Once I started reducing below 10 mg I started to have problems with flare ups. I also get very fatigued. I have recently had to go back up to 15 mg which makes me feel like I have made no progress over the year. I have been working as much as ever, but I have to use every weekend to rest and recover so life is quite predictable. Yoga has been good for my body, and mind, if I have the energy to do it after a day of work. I walk in the weekends and ride my bike to work if I have the energy. I don’t know if this helps you at all. Maybe just to let you know that for me, exercise is very good for both my body and mental health. It’s a journey you can’t rush, which I find very difficult as I desperately want to reduce my levels of prednisone. Take care .
Thank you. I’m sorry that you have had to increase your dose and I can understand that you feel disappointed. I started on 15mg for 4 weeks and it was more difficult to assess what effect it had because Covid wiped me out for 2 weeks. I’ve been on 12.5mg for 4 weeks and am about to drop down to 10 mg.🤞 I’m lucky that I’m retired, so can generally spread activities out as necessary and hubby is on hand if I need help. I know I can’t do anything about the compression fractures in my back now, but I want to strengthen my body as much as I’m able in order to stave off further damage and regain some of my fitness. It’s a matter of working out what is best and at the moment, I’m still in that process. I’ll get there eventually. All the best to you.
Can I suggest once you get to 10mg you reduce by only 0.5mg a time and maybe use one of the slow tapers we suggest . And would say the fatigue you felt was probably a combination of adrenals stuttering as well as your PMR.
I appreciate you work, but you do still need to realise you have an underlying illness that need controlling…. Although you are on Pred, your illness hasn’t been cured.
These are examples of a slow taper -
healthunlocked.com/pmrgcauk...
— and this explains how to deal with a flare - should you have another- there is usually no need to return to a higher dose for more than a week or so to get it back under control -
healthunlocked.com/pmrgcauk...
- and info on adrenals -
You may have had the energy to exercise on the higher doses of pred - for some people it provides a false boost that is masking the underlying illness you need it for. You aren't heading relentlessly to zero - you are looking for the lowest effective dose and in the early days that is going to be higher than it will be later as the underlying disease activity fades. After 10mg the recommendation is for 1mg per month maximum and any faster has been found to be predictive of flare. For many, 1/2mg per month is as much as they can manage, even with a slowed taper and as you get closer to that lowest effective dose the margins are all much smaller.
Type of exercise is also critical - PMR-abused muscles are intolerant of repetitive actions and more likely to suddenly say, "No more..." Something like aquafit where they are being supported by the water may allow more to be done than trying to run or cycle where your back muscles are also working hard, not just your legs.
If you are flaring repeatedly at a similar dose, that is a sign you are at your destination - it doesn't mean you won't get lower, just not yet.
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