I’ve noticed over the past few months I’ve lost muscle mass, this was never a problem before pred, I understand that this can happen with long term pred. Can anyone tell me how I can regain/ build up my muscles again, I’ve lost muscle all over my body and it’s horrible, I do walk every day it’s not raining, not far but a little as I’m too exhausted to do a great deal, I’m not up for going to a gym, so it’s got to be gentle, and not too strenuous .
Any help would be appreciated .
Thank you
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2013mayo
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I know others with more knowledge will be along too, but I have been on pred for 2yrs and noticed changes with muscle wasting & muscle weakness fairly quickly. I still have weakness in all muscle groups but have prevented too much deterioration through eating a very healthy diet (lots of protein as this is the main building block for muscle tissue) and exercise.
Diet is fairly easy....meat, fish, quinoa, eggs, cheese, some pulses, nuts, etc. There's lots of advice and information around to advise you.
As for the exercise....try and do something every day, but this has to be no more than you can manage and within your capability on each individual day.
Two years ago I could barely manage a 10min walk but now I'm able to walk for up to an hour with two short stops en route. This does mean I have to be familiar with wherever I intend to walk but that's hardly an issue! Walking is not just good for keeping the muscles healthy, it also keeps my bones, heart and lungs healthy and just as importantly...my mental health! I have also discovered yoga....I practise yoga for osteoporosis, which is gentle and therapeutic and definitely has helped maintain healthy muscle tissue. I feel stronger and can see some definition definitely returning to my legs and arms. (Lots of free yoga on YouTube)
Whilst I'm on pred, I'm definitely not going to have the muscle tone I had before pred, but I do seem to be able to prevent further deterioration by maintaining what I've got.
Hope my experience will help you to decide on your own plan that's right for you.
Me Too! My poor little legs! And without bragging l did have a lovely pair of legs 😉
Mine have become worse since Lockdown as l was Shielded, l did write a Post on it so l’ll add that link & you can read what reply’s l had.
I need to walk further & get myself back into a higher shoe 👠 l can’t inject my MTX in my thighs because there is no muscle mass, thank goodness for my tummy 😉
Hi, Yes I do understand re “ your poor little legs “ I too feel I now have little legs, never was they before, I had nice legs with good muscle tone, not that I was a keep fit fanatic, it was natural, now they are covered in scars and bruises and muscle wasting, not a pretty look 😟
After starting Pred for GCA my muscles melted away very quickly from being well defined and strong aged 54. I never stopped walking my dogs, don’t know how though at some points in the journey. From what I read here, it is a very individual thing as to how quickly fitness is regained and whether muscle bulk and strength get back to previous state. Our much quoted mountaineer who went from wheelchair to summit during their recovery I suspect is rare but a beacon of hope because if one person can do it maybe.....Personally, after 4 years, 8 months off Pred I haven’t got my previous physique back and feel much older. In the last 18 months of Pred I got tendon problems which will have hampered things, then I got Covid back in March 2020 and long Covid after that. I was never diagnosed with PMR but I do notice that if very quickly get strained muscles and I don’t know if this is very mild autoimmune stuff or damage and weakness. I do think the year + I had with poor adrenal function had a lot to answer for too.
So, I am trying to get fit my doing walking and weightless floor exercises as prescribed by a physio and a podiatrist (Achilles problems) in order to be fit enough to even set foot in a gym. With anyone I’d say aim really low and build up and like Pred diet, normal for a well person isn’t of all for Pred bodies. Start really low and work up.
Thank you, Very disappointed that you haven’t got your muscles back to pre pred, I’ve lost muscle all over, legs abdomen arms, you name it. Can’t stand the thought of looking like this forever, it doesn’t notice to my husband or anyone I know, but, are they just being polite? 🤔
When PMR came along I was recovering from a knee surgery and was seeing a physiotherapist regularly anyway, so we just shifted our focus to address issues with PMR. Once I started steroids my ability to walk as long as I needed to returned, but I do feel very tired after a 5-6 mile walk and I never used to. I do joint rotations, a small selection of exercises and a bit of cardio (15-min elliptical or at least 20-min walk) every day. The exercises I do are similar to movements you need to do with your arms anyway (pulling up or down etc) but with a resistance band. I also practice squatting very slowly and a couple of my exercises are a variants of spinal rotations including forward bends.I do feel that my muscles are more vulnerable to accidental injuries, so I try to be careful as recovering from them takes longer than it used to.
I believe that we can ultimately recover, but it requires personalised daily effort. I would recommend seeking advice from a good physio.
Oh wow, I can’t even walk half a mile, I could when I first started my journey with GCA/PMR, but over the last year it’s gone downhill, I do try, I’ve started doing a few squats everyday, but my arm pain prevents any form of exercise with my arms, I’ve just tried holding a can of beans in both arms and pulling up, but the pain is too much. I wish I could build up my strength but at the moment it’s just not there. I do try to increase the walk, slowly, it has improved but not to the level I’d like. I’ve become this weakling.
I am so sorry you have to struggle. I do think you need help from someone who can assess your current situation and give you exercises that are compatible with what you can do as well as monitor your progress. If you are in London I could recommend my physio/osteopath who has a very holistic approach.
Hi, Thank you, I live in Oxford, not far from London, I’ve actually sent a self referral to physio for my arms, but so far not heard anything. I’ve also got my op coming up in June so I’m not sure how long I will not be able to put any weight through my leg, (muscle reattachment).
A good book for these and more suitable exercises is ‘Treating ARTHRITIS Exercise Book, Margaret Hills SRN and Janet Horwood. Sheldon Press ISBN 0-85969-704-5)
It was recommended when the support group had a speaker, Harry, who is a fitness trainer and knew about PMR. He did prepare a special sheet for the group to take home and recommended this book.
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Instead of the beans - get a couple of empty 500ml water bottle and add water - 100ml is plenty to start if that doesn't hurt. if not, 50ml - and use them to do 5 bicep curls if you can. If not, even 2 or 3 is a start. Rest from that the next day - and be good about doing them every alternate day. If 3 is OK, add one. I really do mean ONE. Repeat until you can manage a set of 10 reps. Then add more water - never more than 50mls at a time until you see you can still manage that. It sounds crackers I know - but your muscles have had a long break and they don't rebuild quickly with PMR and pred. If you do so much it hurts and then try again, they will never recover from the DOMS (delayed onset muscle soreness) and you just keep the damage, that is what training depends on. The rest days are crucial too. Do something with other muscles.
Do the same with walking - start with a time you know you can do without penalty the next day. Halve the time - that time out and the same back. Every other day add a minute out, a minute back - until you get to a rest day where you can feel you did too much yesterday. Go back a day and stick at that time until it feels good on the rest day. Then you can start adding minutes again.
It sounds slow - but like tapering, it isn't slow when it works and you don't go backwards! You don't need heavy weights, you don't need long walks - 3 times 10 minutes with rests is the same as single half hour walk but far more achievable. And it is the success of achievement that is really important.
And what about a natural and economic aid like bone broth? Good for connective tissue, cartilage etc and also beneficial for a whole spectrum of issues that confront PMR sufferers? There is a lot of info on the web about it. So don't throw away those bones!!! medicalnewstoday.com/articl...
Bone broth is brilliant. They reckon all autoimmune diseases start in the gut - and bone broth is great to prevent or heal leaky gut. Trying it myself at the moment for Crohns. But you can buy good quality collagen hydrolysate which I believe does a similar job. You just add the tasteless powder to drinks, soups, gravies etc. Hoping the broth works for me, but there are only so many chicken meals I would want in a week - living on your own makes it a bit harder!! I don’t want to be “chickened out” so to speak!
The great thing is that it is cheap - I get my beef bones from an organic butcher in Devon. They stock a collagen dry powder which is also tasteless (Ossa certified grass fed collagen) when you get fed up of the slow cooker.
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