I have PMR and osteopenia but can't lift arms much, typing wears out hands quickly, can't squat. Legs are wobbly. I walk daily for 2-3 km, slowly. Posts often (change to sometimes) talk about folks exercising like I used to, but that doesn't seem possible now. Should I, despite problems listed, push myself to exercise more to fend of bone loss? I am good about nutrition, eating/drinking - some supplements - with calcium, Vit D, K.... (Background: Went on 15mg Pred, Oct 2021. Down to 13mg now. T-scores: -1.6 lumbar spine, -1.7 neck of right femur, 1.3 left forearm. Doc wants me on yearly Reclast infusion.)
How do people with PMR bike, garden and hike? - PMRGCAuk
How do people with PMR bike, garden and hike?
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Greytree
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DorsetLadyPMRGCAuk volunteer
Have to say if you can manage 2-3kms a day then you are aren’t doing too badly…. many can’t manage that. ..and walking is good for bone health.
Perhaps Pilates or yoga, or just gentle stretching exercises would help arms…plenty online, but would be better if you could get F2F sessions, then you’d be sure you aren’t doing any harm.
As for other people’s exercise regime, we are all different, starting from different levels pre illness, so don’t try and do what they are doing….all you can do, is what you can do!
Maybe have a look at this link - healthunlocked.com/pmrgcauk...
Thanks so much for link and advice. What is F2F?
Sorry -face to face😊
Thanks so much for the link Dorset Lady. Very useful.I'm trying very hard to build up strength and improve muscle lost over the last two years on Pred. I'm currently on 4.5mg soon to start a very slow taper to 4mg. Also have recently developed piriformas syndrome which is rather painful to say the least. I've had some good advice on piriformas from PMRPro and I'm working on recommended exercises to help that.
I'm wondering if muscle loss is a consequence of taking Pred over a long period ( I started on 15mg in June 2020) or is it PMR or maybe a bit of both ?
Muscle loss -mainly Pred, but obviously PMR curtails much exercise -so bit of both. As I’ve said before found Pilates very helpful particularly for legs when first started it -bit higher dose than you. Have continued with sessions for about 8years now -got me through 3 joint replacements…
Sometimes I feel an utter fraud being on here, as at this moment in time I haven’t got any pains (am on a very slow taper to 4.5mg Pred). My fitness level hasn’t really changed (although I do get some discomfort in my shoulders) but I walk a lot (fast) and do exercise classes at home, plus I can boogie like a young ‘un. Not bad for having just turned 70.
I know I am so fortunate compared to a lot of people on this forum, but I do concentrate on the good things more than the bad - which helps.
You're not a fraud, but you are lucky or fortunate, however you want to view it...my GCA journey (after initial diagnosis) was quite straightforward...so I know what you mean..
...as we are always saying it's YOUR PMR/GCA illness/journey - there is no point in comparing it to others, we are all individuals.
Yes we can compare notes, and suggest options, but what works for me, works for ME, I'm not saying it works for anyone else..bit like life in general really.
Very true, DL. I guess my my main issues are the effects of the steroids. I never had high BP before - or high eye pressure, but I’m so grateful for small mercies.
Plus I’ve never put on any weight, apart from a “fuller” face. Hey ho. I’ll grow old gracefully I hope🤣
Um, I’d dispute the word “often”! Usually people are lamenting not being able to exercise like that. At 13mg I still felt very much under the influence of steroids as a weakening effect. I appreciate that I started on 60mg and had a head start on muscle wastage but I still challenge you to point out the posts in enough numbers to suggest that it’s the norm to be gadding about. I’d say what you’re experiencing is normal in the circumstances. It’s still feels rubbish, I grant you that!
You sound like one of the more active amongst us so I should not worry too much that the rest of us are exercising like mad, as most of us are probably not doing any more than you are and probably some of us a lot less!
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It depends on the person, how severe their symptoms are, how well they are able to manage their symptoms and how fit they were before PMR and how well they were able to maintain that fitness.
At present I have bursitis and achilles tendonitis but until it appeared I was walking a mile a day easily, sometimes more. Even now I can walk a mile on alternate days OK as long as I take it easy.
But as Snazzy says, I doubt it is the majority who can do all that. The usual complaint is what they CAN'T do!
If I walked that far in one day that would be my weeks effort and I don’t have PMR but Stills Disease which manifests RD in my case.As for gardening well that’s a definite no no as my wrists are as about as strong as candy floss, just drying my hair is an exercise!
So well done to you so far 😀
Greytree in reply to
Thanks so much. Stills disease is yet another new one to me. I’m so sorry. I hope all goes well as soon as possible. I can flash wash my hair, but wouldn’t consider trying to dry it, too. Result: I look like Grandmama in The Addams Family. (-:
I've just got past looking like Crystal Tipps 
youtube.com/watch?v=rnGyrxo...
It;s grown out enough to be a bit less thick!
PS - definitely not purple though!
LOL Nice look!
I would love to look like Crystal Tips . I always wanted hair like that from watching as a child, but even on steroids my hair was still limp , straight and very , very thin ( the EDS effect sadly) .I'd even like the lilac colour.
I have briefly considered purple streaks ...
It is the shorter nape hair that is frizzy - not enough weight, the hair on top is smoother. it is improving 
Lots of people comment on this mane of white waves!
Sounds fab -U - lous , Darling ! As Come Dancing Craig would say . I'd definitely be tempted by the purple streaks you could try it out for the Summer.My Grandma had an amazing natural hair colour , she had black hair originally , and it turned a sort of light inky violet instead of grey.
When she went to the salon everyone used to ask her what colour she used or where she got the colour done. Many wouldn't believe her when she said it was natural.
Grass is always greener though , she'd often say that she wanted white hair.
Mine was like that before it went white - these gorgeous grey streaks that looked as if they had been professionally done. Not purplish - my natural colour was deep reddish brunetter. Then it got to the stage it was more streaks so I started colouring it. Still had streaks, just lighter versions of the base colour. Then it got to the stage there were roots after a week so I gave in to nature and went white ...
Which was that other 70's cartoon character that had the big white blonde wavy hair ( it might have been in Captain Caveman ???) anyway I am now imagining you look like that , you've got an amazing figure as that cartoon character too ( which I'm sure is mirrored in real life).
If only ... Though I do still have a waist unlike many on pred!!!
If you think I'm one of those let me reassure you the last 3 days I've been severely limited. Don't know why but can't manage my usual 2k walk with rex, can only manage limited chores around farm and legs are swelling more than usual. I'm reducing from 27.5mg to 25 at present and having to do a lot of resting. Probably a passing phase. Who knows what tomorrow will bring. Just do what you can each day and yes try to push yourself a little as it is always tempting to just give in. I think it is mainly determined by progressive muscle wastage and feeling weak as a result.
Progressive muscle wastage is a big concern. Thanks. I like the idea of pushing oneself - a least a bit each day. Will keep that in mind. Hope the extra swelling subsides soon and you get back to the regular walks. I lie in bed for awhile in the mornings and try to sense how I am in the new day. I find out later. (-:
try my exercise regime. you can do it in bed before you get up. helps. healthunlocked.com/pmrgcauk...
Thanks so much, Cycli! That will be more productive use of my time.
You have to be VERY careful with pushing yourself. Push too far and you end up back several steps that may take a while to recover.
You could end up with cycli extra swelling legs if you do push yourself , no matter how tempting it is . Take it from someone who made those early mistakes , I found it hard to pace my exercise level early on too.
see my reply to PMR above. Swelling nothing to do with activity Some other cause no one seems to be able to work out.
Hope you find a cause soon if it's effecting you , take care , Bee
thank you
You should pat yourself on the back for how much you can walk already , and that walking will definitely help you slow done any effects on your bones and improve your bone health.
Most people whom talk about exercising as they used to are usually further a long their journey with PMR or GCA and are coming to the end of using steroids , if you look at some of their stories you will see that when they were at the stage in treatment you are at they often weren't as able as you are yourself.
Often those whom get back to exercise very quickly had mild cases of PMR or didn't have other health issues effecting their recovery.
Patience is key , if you are already managing to walk 2km it should make you feel optimistic that you could get back to your old activity level when the PMR has gone.
The best physios tell you not to push yourself to exercise outside your comfort zone , but to build up a little bit more as you go , but if you find you have pain or discomfort from your little increases to go back to your original plan after a rest day and try again when you are ready or feel stronger.
There is no point in pushing yourself if it gives you rebound pain or , even worse , a flare up because it means you can't exercise consistently and that slows down your recovery .
Consistent exercise is better than Intensive exercise when coping with Chronic Illness.
Before trying to get on your bike or gardening it is a good plan to strengthen your muscles first with isometric exercises and then get flexibility and balance improved with gentle stretches , Tai Chi or Low impact Pilates classes . If you go to classes tell your instructor your health issues , have a chair near by and water and only do the exercises that feel comfortable to you. It's usually better to start taking part in only half of the class and then working your way up.
Swimming and Aqua exercises can also help to improve all body fitness while putting less pressure on your joints.
Start preparing for biking by using an exercise bike , a recumbent bike is often best , but set it for a flat surface and only start at a gentle pace for 10-15 mins. Work your way up to a maximum of 25-30.
When you feel strong enough and confident with your balance try just doing short rides on flat road , no more than 15 minutes when you begin outside at first and do it with a bike buddy , in case you have any problems on route.
If you want to get back to gardening you can always try doing the lighter activities first for just 10-15 mins a time with rests , not doing any heavy work and sitting on a stable stool or chair to reach borders and be safe and stable. Never do more than 30 mins at a time in the garden even after you have got more able , pacing is important with your bone issues too , and make sure you have time to sit with your feet up for an hour afterwards , with a cuppa!
On your walks , you can start adding in slight inclines for short periods on your circuit so when you try a hike in the future your legs are ready for it. Do shorter hikes , 1 mile to start and find ones with less hills and steep terrain. Try using Nordic Walking poles for your current walks and future hikes , they help balance and improve your posture and arm strength.
Don't ever go mad , I wouldn't advise doing hikes longer than the distance you walk now. And go with a friend in case of difficulty.
Last prevent rebound pain by having a warm shower before and after any exercise. Make sure you do gentle warm up and cool down stretches on either side of activity , even your walks. Make sure you have good shoes and comfortable clothing .
And I can't stress this enough : water , water , water!
Drink before after and during exercise as your body inflammation causes dehydration so you need more water as you exercise to prevent flares. And always have a healthy snack like a banana or some dry fruit and nuts after your activity.
really good advice.
I hope this response about exercise can be saved for others who have such activities they want to return to someday! I am saving it for myself but it is universal.
So love my 15 minute qi gong, gentle energy boost, with Marissa on you tube. Gentle exercise after my ‘in bed’ hip swivel and stretch exercises. Now able to glide through Marissa’s 15 minutes which helps to get the day going. And it being summer now and the bonny light encourages me out of bed. 🙂🌤
Yes I do understand you! I was high on steroids' the first 6 weeks, and started to bike, and garden and just got on with it all again. I flaired and I am now struggling with all the same symptoms as you describe. Raised the dose as I also had an infection and some stress from family issues, but I cannot do what I used to. Many doctors say that you can go back to normal activity, when well treated on Pred., but I think that it depends on what that was - I mean are you 80 or 50 years old - working or not.
Hi my OH does all the heavy work in my garden I am restricted to the bottom patio.What I do is sit in a chair to do my pots I can clean all the rubbish out,then dig and tidy them up.
I have a child’s watering can that I can manage to water my pots and some of the lower garden as well.
I have days where I have cried buckets because I cannot do my garden, but I am beginning to accept I cannot do things that I could before PMR/RA.
We have to learn to pace ourselves hard I know, take this morning up at six a fruit cake in the oven, washing on so my OH can hang it out when he gets up, now feet up on settee reading the daily posts.
Take care
I'm amazed by your stamina , if I made a cake and did my washing before 7 am , I'd be on the sofa for the evening papers as well!I did enjoy a good chair dance to the Pet Shop Boys at Glastonbury last night though , my healing hip wouldn't allow anything more.
Yes but not done a great deal more apart from a walk after the rain had stoped.I like the sound of your chair dance,will try that take care
I think pacing yourself is the key. You get to know your limitations when you push yourself a little too hard, and you know when to stop from then on. I never do anything for longer than an hour, usually less. So I am decorating and gardening (mainly weeding on my knees) but I don't walk much because that's the main issue for me. Any heavy work I get someone else to do. It's taking forever to get the woodwork painted, one door frame a day, some days none, but at least progress is being made and I feel good. Sanding exhausts me so I use liquid sand paper instead.
What is liquid sand paper please?
I don't know if you can still get it. It's a liquid you put on a cloth, rub onto the paintwork then wipe off. Dulux made it.
You are doing better than most of us Greytree. I can't walk far due to mid-foot arthritis in my right foot otherwise it would be my favourite exercise. I am wondering if you could add some arm/leg weights to your walk regime?
Thanks. I maybe could. I am trying to pump my arms a little - no weights, just my fists. Can’t do much. Maybe soon.
you are doing well! I just completed a 200 meter walk and feel triumphant but weak.I also feel totally inadequate when I read of biking etc and wonder if I am somehow failing. But I also take comfort when I read of fellow sufferers who watched their muscles visibly disappear at 60mg pred...and at 4mg mine are still showing no sign of return, even though I try several times a day to coax them back. Some wonderful exercises have been recommended here but they leave me even more wobbly and exhausted.I still do all my own housework, cooking and gardening in 10-20 minute slots...and I can now work about 8 hours a day (all online) in 3 stretches with rest and sleep between.
I think we are doing the best we can...and it is so much better than the near paralysis that PMR inflicted.
Wising you ever increasing strength.
Don't forget housework and gardening are medium to high intensity exercise activities, so if you are doing those , doing stretches and the odd strolls each day you are doing a lot and should be proud of yourself too.
We all have difference strengths and weaknesses too.
When I'm not nursing a hip injury , I can do a certain amount of walking and light exercises . I can use my recumbent bike in small sessions and do some swimming but I'm not allowed to do hoovering and many of the things you do I can't because of my heart.
It's just great to keep trying as much as you can and keep positive , take care , Bee
Dear Blearyeyed, you always lift my spirits. Thank you.
Many thanks. You are an inspiration with all you do - paced.
Well done on the walking. Regarding biking we hired bikes a couple of years ago in Lanzarote and within 1/2hr they had been returned. I just couldn’t get the power in my legs to pedal even up the gentlest slope.
Last week we thought we would try again but this time on electric bikes. Wow what a difference. You could put a little effort in and cruise along the flat and when you came to a hill just up the power and you’re up the hill before you know it. I’m glad we invested the £60 to hire two bikes for the day as it made my mind up that cycling is just not fit me, so saving about £2-3k I’d planned on buying bikes.
I’m struggling with lack of strength. My arm gets tired brushing my teeth! My muscles feel non existent after PMR and years of steroids and my worsening osteoarthritis surely doesn’t help matters. I’m trying to learn patience and embrace stretching as an accomplishment. I did use my activity tracker to see how much I moved just doing daily house chores. It’s at least a mile every day! That made me feel a bit better.
Try not to worry. I understand. My exercises don't require much effort as they are designed to improve the flex. and mobility of the muscles you have. The pred. has 2 main mechanisms on our existing muscle. Firstly it breaks down fast twitch muscle and converts it to fat. This is why we stumble because our inbuilt automatic reaction to correct means that the muscles don't respond quickly enough. The next type of muscle it breaks down is the endurance muscle hence our strength and stamina are reduced. Nothing much we can do about this or the fat deposits. As for weight the muscle is denser than fat so redistribution affects our looks but shouldn't increase weight. Unfortunately, as we are doing less we use less energy and so if we still eat as we used to we will gain weight. The second mechanism in steroid use is that it appears to prevent the muscle tissue from absorbing proteins and other useful minerals we need to rebuild lost muscle. This double hit is unalterable whilst on pred. and the inability to put sufficient cardio-vascular activity due to our lack of energy and stamina means that we continue to deteriorate whilst on the med. I am trying to set up an exercise regime to test this with some checks and balances so will update you all when I have worked something out. Going to use myself as a guinea pig on this as interested to test my theories.
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