Exercise

[PhilFreeToAsk]

Having just started on steroids 2 weeks ago, I have been wondering about exercise in helping recovery.

Any recommendations on how much to do?What type of exercise has helped you?

Do you have a daily routine?

[PMRpro Ambassador]

Start small! If you try to do too much all at once you may end up causing DOMS (delayed onset muscle soreness) because your PMR-abused muscles can't heal as well as normal to get the training effect. Pred doesn't help.

Literally start with a 5 minute walk out and back and the next day do something else to check your legs have coped. On the rest day use different muscles and maybe do some bicep curls - but not using weights, just perhaps a pair of 500ml water bottles that are half full at most and do 5 bicep curls, rest and do 5 more.

If you feel OK the next day, add a minute out and back for the walk. With the bicep curls add 20ml water and maybe do 6 plus 6. Keep doing that until you feel it next day - and then stop at that level to train for a couple of weeks before starting to up the time/weight/number.

That way you won't overdo it and cause pain. DOMS in PMR-affected muscles can take a very long time to recover and during that time you shouldn't exercise them or it will just take even longer to recover. And being in pain is very off-putting

[PhilFreeToAsk in reply to PMRpro]

Thanks, really helpful as I feel exercise is so important.

My aim was to go for a walk everyday. Today, I extended my walk by 10 minutes.  I was very tired at the end. When I got home, I had always intended to make a soup which I did. I felt exhausted. Reading your post, made me realise that a little rest would’ve been better. Also, breaking walking up across the day may help me and not go so far each time. I think I will introduce the water bottle to start strengthening muscles.

I enjoy gardening. Today, I mixed my time up with sowing seeds which is gentle with weeding and transplanting a couple of small plants. Getting down and up from the ground is quite an effort. I thought I mixed it up well. Still did too much in one go. Old habits.

 I learnt tai chi a few years ago. This I practice every morning since on steroids. It is so gentle. Nearly every joint is used and muscles slowly moved.

A lot to think about and I am rethinking my exercise regime. Probably the most important is a change in attitude to stop pushing so hard.

[PMRpro Ambassador in reply to PhilFreeToAsk]

What you did in a day will come - but at the moment, that is probably at least 3 days worth!!!

[PhilFreeToAsk in reply to PMRpro]

Indeed. Pacing is important and I reckon I could have spread it across the day. Very hard when nature has a schedule and I want to get certain vegetables planted now. In the end, I had to stop.

[PMRpro Ambassador in reply to PhilFreeToAsk]

Just remember that the rest is as important as the exercise!!

[HeronNS in reply to PMRpro]

That is very true. To this day I always have to have an equivalent amount of rest to the amount of exercise. On a day like today, when I did a bit more than I'm used to, rest was definitely in the cards. That and a nice mug of tea. ☕

[herdysheep in reply to PhilFreeToAsk]

I try to work on the basis of 1unit expended, the same is needed of rest, but it is frequently more units of rest to that expended. Over time you will recognise signs in your body that tell you the ratio to use. Sadly, we often find out after the event, hence the value of input on here to learn from others!

[PhilFreeToAsk in reply to herdysheep]

Indeed it is the case.

[Bluey-1 in reply to PMRpro]

’3 days worth’

I realise reading these responses I may not always pace as well as I think I do! Taking an equivalent amount of rest to activity, however gentle, is the way to go. Follow the body at all times. Occasionally I fail at it.

[HeronNS in reply to PhilFreeToAsk]

It does get better, although if you're like me at the point (varies, between 4-8) where your adrenals really have to start producing cortisol again you may have a spell of "deathly fatigue". Today (current dose 1.5 mg pred, but this is my 8th year) I walked 11,000 steps in one go. have spent rest of day recovering, but not deathly fatigued. I also have a "tired" heart so that's not helping. So your idea about consistent walking is a very good one.

[Hidden in reply to PMRpro]

Well put

[piglette]

I go swimming. Mainly because I enjoy it. What sort of exercise do you enjoy?

[PhilFreeToAsk in reply to piglette]

I tried to walk every day. Maybe not far but used to be more vigourously once or twice a week.

I enjoy gardening, which is a combination of a hobby and exercise.

I also attend a Qi Gong class each week and normally practice some simple routines at home when I feel motivated.

[piglette in reply to PhilFreeToAsk]

I garden as well, but I am not sure I put that much effort into it, more planting things, pruning and weeding. Also feeding the birds.

[PhilFreeToAsk in reply to piglette]

It is not always about effort but being in the garden to enjoy nature.

[PhilFreeToAsk in reply to piglette]

Have you found swimming helpful in managing PMR?

[PMRpro Ambassador in reply to PhilFreeToAsk]

I couldn't swim - shoulders and neck didn't let me. But I love aquafit classes. In the UK I went every day Mon-Fri during the 5 years I had PMR without pred and I credit it with keeping me upright and mobile. The opportunity hasn't been available here until recently but the once a week I do now has made a big difference to my mobility.

[Hidden in reply to piglette]

I can't swim :/

[DorsetLady PMRGCAuk volunteer]

From FAQS -

healthunlocked.com/pmrgcauk...

- and plenty of related posts…

[PhilFreeToAsk in reply to DorsetLady]

Thanks. I read the link you sent. I thought it was well written and very informative.

[Maisie1958]

Do what you enjoy- but not too much at a time. To be honest in the early days the less I did the better I felt. Sadly I didn’t realise this at the time- all the best 😊

[PhilFreeToAsk]

Thanks. I am starting to realise that now.

[Sew_And_Sew]

I try and swim three times a week. It's a club pool and it's approximately 18metres in length. I do a minimum of 10 lengths right up to 50 lengths. On average I'm doing about 25 lengths - obviously will depend how I'm feeling. It's only a gentle breast stroke but I'm moving.

I did try the gym to stretch but it hurt to much. I've been referred to an NHS gym support as I feel I need medical advice as to how to do things in the gym. My husband isn't medical so his ideas of stretching didn't suit me at all.

I also walk most days with my husband and Jack Russell dog Poppy. I do use a stick to help me for this as there are sometimes some hills, even small ones, that I need support to get up.

Hope this helps.

[GrandmaPirate]

If possible try to start pilates, slowly building up time and number/type of exercises. It is a perfect way to strenghten your muscles and to measure daily what your limits are. Even my rheumy started herself to do daily pilates. After several years my routine became 50 minutes pilates/day except on Sunday. I believe it is important to address regular exercise into your daily routine.

[Apollothalia]

I’m a yoga and qigong teacher with RA. For me movement really helps. But it’s different for everyone. Start small and gentle and allow plenty of rest time too. Breathing exercises really help too. If anything hurts just stop. Hope that helps!

[PhilFreeToAsk]

Yes it helps.

I attended a weekly Qigong class for health. I have found Tai chi 24 helpful. Having learnt a few qigong routines not necessarily to a high standard but enough to get benefit. Fortunate to have learnt shibashi which I am going to start practicing at home. I will look at breathing and shibashi incorporates slow abdominal breathing so get gentle movements and breath.

The only problem with my Qigong exercises is a lack of muscle strengthening.

It is time to use the techniques that I have learned to be used in situations like this.

[greengages]

I teach Iyengar yoga and it was a huge shock how much affect the PMR had. Do whatever you’re drawn to, small steps and build up gradually. I practiced a lot of recuperative poses and still do to help with energy as well as pranayama (utilising the breath). Supported stretches helped maintain my mobility and kept the spirits lifted. Gradually added in other poses, now back to everyday practice but can’t do what I used to. Rest as everyone has said is vital. Good luck it’s quite a journey

[PhilFreeToAsk in reply to greengages]

Thanks. There is a consistent message from so many people summed up by “Do whatever you’re drawn to, small steps and build up gradually.” Each person’s experience has made me reevaluate my approach and realise that fighting this does not help nor does giving in.

[PMRpro Ambassador in reply to greengages]

I did Iyengar yoga, started after PMR appeared and I had to find a different gym, one with a pool. I was very sceptical when one of the acqufit instructors suggested I try it, i already did Pilates. But she adapted the poses for me and it was wonderful. Missed that all very much when I moved here.

[greengages in reply to PMRpro]

That's such a shame PMR pro, yoga has been my godsend along with this site. The yoga helps not just physically ( I’m back to doing hand balances etc) but mentally and emotionally too. This site is invaluable for information and guidance, thank you to everyone for their support.

[papadapadoo]

Before PMR I used a 35-lb kettle bell for exercise. Now I have a light plastic one which is hollow, and fill it it partway with water. Kettlebell swings are great exercise and not too taxing.

[RunningRabbit7007]

Before PMR my life revolved around exercise - running, weight lifting and intense cardio, five or six times a week. This stopped for five months prior to diagnosis. Once on Pred I had a new lease of life and resumed my regular routine. It didn't last and I became very ill and incapacitated very quickly. That was Sept 2022.

Since then I haven't managed to do anything that hasn't resulted in needing three weeks recovery. The wonderfully knowledgeable people on this forum have enabled me to see the error of my ways. I loved lifting weights but I can't see it being possible for me; just too taxing on my muscles. I have ordered a treadmill to start slow walking. Of course everyone is different but I think the general advice is to go slowly, build up to doing more and listen to your body. All of the things I didn't do! Good luck and take care.

[Hidden in reply to RunningRabbit7007]

Your experience sounds exactly like mine. After a couple of weeks on pred I felt like I had a new lease of life and went straight back into the weights room 4 times a week. It catches up with you though doesn't it.

You'll get it back if you persevere patiently and slowly, you just have to understand that you aren't going to be able to match your pre-PMR gym performance probably ever again, but you CAN get quite close. I'm now 15 months in and can lift lightish weights with no difficulty for most exercises, although I need longer rest breaks between sessions and extreme shoulder engagement exercises are completely out the window.

[RunningRabbit7007 in reply to Hidden]

Thanks that's really encouraging. It helps to hear from people who have similar experiences and positive outcomes. Once I've started the walking and can tolerate that, I will try a few light weights, see how I go.

[BarTat]

Before PMR I was physically active, on my feet most of the time, running a 5km Parkrun most Saturdays. My PMR (started in Dec 2022) made me immobile overnight but within a week of being on Pred I walked a 5k. The next week I walked 4km and jogged1km. Within a few weeks I jogged the whole 5k. I have been gradually increasing my pace but still doing 10% longer times than pre-PMR. I sometimes have a bad few days after a run and have realised that I should not be reducing my Pred on the same days as doing harder exercise!

Hope this gives you some encouragement but the advice you have been getting on here is good. Take it slowly, listen to your body, but I would add: don’t give up. Exercise - in particular walking Outer running is good for bone strengthening which can offset one of the side effects of Pred. Take your calcium too (no one told me that at first).

[WarmVelvet]

Thank you so much for asking the question concerning how much exercise one can participate when taking steroids. I am a very active 69yr old wanting to do more exercise as my muscles are weak and being slim isn’t helpful! I used to participate in yoga and Pilates and gave it up incase a flare up happened. Have started Tai Chi and find it really good from a holistic point of view. Taking 6mg /7mg of pred on alternate days.

Thank you also to Dorsett lady for the link you mentioned to PhilFree to ask. It’s given me such peace of mind. I really appreciate your help. 🙏💖

[DorsetLady PMRGCAuk volunteer in reply to WarmVelvet]

You’re very welcome…

[calibriel]

I’m 72, and my normal regime is swimming up to twenty 25 metre lengths twice a week, with a short routine of Pilates and gentle aerobic exercise on all the other days except one (I usually award myself one day off a week). Pre-pandemic and PMR I used to do much more: swim twice as far, with a 30-minute walk to the pool with my kit on my back. Like everyone else, I listen to my body. If I break the routine for any reason - illness, being away, etc - I build back up again gradually, particularly with the swimming. I hope you find a level that suits you. The Tai chi sounds excellent. I find that swimming (which has always been my sport) and Pilates compliment each other because both work with the breath

[Hidden]

Right back at the beginning when I was almost completely crippled I started out with just walking for maybe half a mile. It's pretty important that you keep up with your exercise, for strength and fitness, and for maintaining bone density but you have to take it slowly, especially at the beginning.

I do the weights again now, but maybe only twice a week, and my sessions are light compared to what they used to be. Two years ago before PMR came along I could keep up with my 21 year old son and could comfortably bench 80kg for 10 reps but now there's no chance of that. I'm lucky if I can bench 45kg now, and that weight really hurts the front delts. ☹️. I do pullups on the climbing bar in the park once a week on a Sunday morning and got back up to 50 reps last Sunday but could only max 7 reps in a single set - it's ongoing and I find underhand (supinated)grip to be easier on the shoulders than overhand (pronated) grip now - used to be the other way round. The main thing is to keep going in whatever way you can but be VERY aware of what you're body is telling you, and if it feels like it's too much, then it IS too much and you need to stop! Cycling is a good one and I do that a couple of times a week for about an hour at a time. No stress on the joints and it's good aerobic work. Other stuff I do : general gardening work, foraging for winter firewood and chopping up logs with my chainsaw and axe. I still work too (self employed electrician) but only on small and very easy jobs.

Hope I got my 'pronated' and 'supinated' the right way round - I always get'em mixed up lol.😆

[PhilFreeToAsk in reply to Hidden]

I’m amazed just how much people are able to do. Some impressive achievements.

[Hidden in reply to PhilFreeToAsk]

You just gotta keep going while keeping a close ear on what your body tells you.

[PMRpro Ambassador in reply to PhilFreeToAsk]

It varies a lot, even for a single person. One gentleman was in a wheelchair at one point (Easter) and couldn't walk to the front gate. He started with the 5min walk and adding time 1 min at a time and the following ski season he was back to the slopes - teaching 4 year olds to ski! He was over 80 at the time.

[AshPen9]

I was wondering about Nordic Walking for improving muscles. There is a group locally and the leader says it helps people to recover from a wide range of conditions. He works with people with neck, shoulder and back problems, and Parkinsons.

[PMRpro Ambassador in reply to AshPen9]

Depends a bit on your shoulders really. And whether you can stride out. I think HeronNS did Nordic walking.

[HeronNS in reply to AshPen9]

Yes, I took up Nordic walking in 2015 after the PMR diagnosis and threat of AA prescription. I had to give it up a couple of years ago when I hurt my knees and had to use a different kind of poles to offset my weight, and must confess haven't done it lately, but I intend to get back into it again after a short trip we're taking in April.

I quite enjoy it. Thought I'd be embarrassed, but only once did some jerk ask me where my skis were, and anyone else who spoke to me was asking for information!

Don't overdo it. Our instructor said no more than 15 minutes a day three times a week to begin, and work up.

[AshPen9 in reply to HeronNS]

Thanks for that HeronNS. I might give it a go. They have beginners sessions and also two weekly sessions for those who know what they're doing, so if I feel daft on my own I can always join in with them! Enjoy your trip 😁

[PhilFreeToAsk]

Thanks. Very interesting.

[cyclingwalker]

Thanks for asking this question. The advice given has been really useful. Regards

[PhilFreeToAsk in reply to cyclingwalker]

It has been invaluable to me. Fantastic experience and support shown by this group. Very impressed.