Muscle Strength and Maintaining Weight: I am a... - PMRGCAuk

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Muscle Strength and Maintaining Weight

S4ndy profile image
68 Replies

I am a qualified exercise teacher and was working with the over 60's when I was diagnosed with PMR.

Below is some information which may help people who are struggling with regaining muscle strength and maintaining or putting on weight.

First thing I would say to you is regarding diet. If you are in good health, that is to say no cardiac problem, stroke risk or diabetic and you wish to put on weight then I would suggest that you increase your protein intake to help build muscles and your fat intake to help maintain your weight. As you probably know fat is the thing your body can lay down as a reserve quickly. Carbs also gets metabolized and stored as fat but they have to use more energy to get converted although they do give you a fast amount of energy if you need an energy boost. Therefore, providing you don't have any preexisting conditions I would recommend adding extra protein (meat, milk, cheese, eggs and fish) into your diet. So perhaps an extra cheesy snack or an extra egg. Also you can enrich your food with fats such as adding olive oil to your salads, eat full fat yoghurts, add cream to your cereal or make creamy pasta sauces with an addition of cheese and cream. Sounds like madness but its what's generally done in order to enrich a diet of an older person who can't maintain weight.

There's a nutritional supplement that's given, which is available on prescription which is a high dose of fat. But its revolting and only used if the person cannot eat in sufficient quantities.

My advice is enjoy your freedom to eat cream and cheese whenever you fancy!

Please don't follow the above advice if you are suffering from other conditions without consulting your GP.

On strength training. All muscle strength training relies on micro-trauma to our muscle fibers. ie we damage our muscles so that the repair themselves stronger. This is a natural process but obviously when you lift heavy weights or do repeated strength exercises more muscle fibers suffer micro trauma.

Therefore as our muscles are affected in pmr we need to be careful as the blood supply is lessened and the micro trauma takes longer to heal.

We need to start slowly and gently and build up gradually giving muscles time to recover in between sessions.

My recommendation for upper body would be short slow Nordic walking as this works the core, upper arms and legs. Start out with a short 5 mins or 10 mins and build up gradually. You can go faster as you get better but speed burns calories and you need to hold on to your calories so slow is good

.

Pilate's works the muscles by elongating them. Often in Pilate's a rebounder machine is used to offer resistance to build strength. Pilate's is very good for core strength.

My own recommendation would be to have a personal lesson with a Pilates instructor so that your exercises can be tailored to you. Pilates instructors are highly trained and should be able to offer you a tailored session. You can join a group session when you have built up your strength and endurance. Never be afraid to ask the instructor for help.

Swimming can cause repetitive strain on the muscles and joints although the water does support the muscles. I would keep swimming down to a leisure pace and not try to do as many lengths as you can. Swimming doesn't burn so many calories so is a good one for not losing weight unless of course you are an Olympic swimmer. A gentle aqua aerobic class might help but most aerobic classes by their very name are cardio and are usually to lose weight. Try to find a gentle one. I know I have seen some classes described as

aqua splash which is much gentler and does not concentrate on cardio.

Little and often is the key. You can start from your armchair. Bicep curls in your armchair using full tins of beans as weights, start with small tins and progress to big tins or small bottles of water remembering that a small bottle of water is usually 500mls and is the same as a half kilogram weight or roughly one pound. You should start with a small amount of repetitions say 5 curls a time about 4 times a day and building up very gradually until your can do 10 easily. Cheap and in the comfort of your own home :)

Later as you get stronger you might like to put a few tins in two carrier bags and use those as your weights.

Hope this helps you and anyone else reading. You should always discuss any new exercise program with your gp.

Good luck with your endeavours.

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S4ndy profile image
S4ndy
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68 Replies

That's really helpful, hopefully will be of great benefit.

PMRpro profile image
PMRproAmbassador

Thank you!!!!

Hi s4ndy, I just wondered if you were able to teach still with PMR. If not it must have been frustrating!!

S4ndy profile image
S4ndy in reply to

No I had to give up my business three years ago.

I can only walk short distances and then I am in pain. Not so much the PMR but the disc degeneration and osteo in knees. Also have it in my shoulders.

I know I probably won't be going back to doing what I was doing so it's great to be able to use my knowledge if it helps people here.

Maybe one day I may be able to do talks again and demo's but at the moment I am not fit for much at all. Trying to maintain my mobility and posture and stay positive too.

This too will pass :)

in reply to S4ndy

I am sorry to hear that, but I think it will help new members and older ones here how to at least think about how you strengthen muscle in appropriate ways.

PMRpro profile image
PMRproAmbassador in reply to S4ndy

Just wondering if you could create a programme for people in a similar situation to you? Seated, standing, intensity suggestions. Maybe even something that could be turned into a video and linked from the website. Just letting my mind ramble ...

Baileyw06 profile image
Baileyw06 in reply to PMRpro

That would be great!

pigeonCl-HU profile image
pigeonCl-HU in reply to S4ndy

This too shall pass.... so true, has always been my motto.

Wish I would have invented this little sentence.

Thank you Sandy for your valuable input.

pigeon

Lilbitty profile image
Lilbitty in reply to pigeonCl-HU

Lol... with a little bit of humor to the saying to the "This too shall pass".

My Mom would ALWAYS say this to me when times would get tuff for me and it would seem to pass... HOWEVER...

I think now she meant GAS!!!! 😁

teesher profile image
teesher

Thank you S4andy, that was really helpful. I'm attending a pilates class and find it really good for gently building up muscle strength again and I love to walk. All the best on your pmr journey. I will look forward to reading your posts.

SnazzyD profile image
SnazzyD

All makes sense. I’m now 56 and 2 years down the line from GCA and at 2mg Pred and I thought I’d be building up exercise by now. Whilst my muscles are becoming more bulky, having gone to nothing due of Pred, my problem now is tendonitis and that I pull a muscle at the drop of a hat. Sooo frustrating.

Yellowbluebell profile image
Yellowbluebell

I have pinned your post s4ndy so that it doesnt disappear. Thanks for the advice should help a lot of people.

Twopies profile image
Twopies in reply to Yellowbluebell

How do you do that? Thanks!

Daisy-Roots profile image
Daisy-Roots

Thank you. I'm 4 years in and at 4mg. Was diagnosed with moderate osteoarthritis in right hip at the same time as PMR. Was told to take paracetamol for that. No one mentioned exercise would help. Have always been very active and apart from severe tiredness managed to carry on working and doing most things. Previously had plantar fasciitis for 8 years in both heels which limited my activities severely and I was aware that my leg muscles had atrophied. From March i have also had Trochanteric Bursitis of the right hip. I'm on the wait list to see a physiotherapist but I live in Oxford where the system seems to have completely broken down and it takes months to get an appointment. So I managed to get a private appointment. The private physiotherapist seems to think the hip osteoarthritis has de-generated and that caused the bursitis. I'm now starting Pilates and had a swimming lesson last night to learn crawl as I need to build up as much muscle as I can to protect the hip. I cannot walk far or pain free. What angers me now is despite the fact that I'm an active person I was never given any advice how to manage the physical loss of muscle for either the plantar fasciitis or the hip bursitis. This lack of treating the patient holistically has meant I have crashed between one biomechanical problem to another when with good physio therapy advice could have minimised the effect of these. Thank you for the advice here against weight bearing exercise and PMR, timely for me. I also was never told not to take calcium with pred and have only just stopped doing so.

DavidMF profile image
DavidMF in reply to Daisy-Roots

Hopefully you haven't stopped Calcium completely, just allow a 4hr gap between Perd & Calcium.

Daisy-Roots profile image
Daisy-Roots in reply to DavidMF

No not stopped, just taking at different times and started taking K2. What I have stopped for the minute is Anadronic Acid, but only whilst I get around to researching it a bit more. Thanks for your concern!

S4ndy profile image
S4ndy in reply to Daisy-Roots

Keep taking your calcium, you need to keep your bones strong, especially when taking prednisolone.

Also weight bearing exercise such as walking does need to be done even if only for a short time. It is this which stimulates generation of new bone cells to replenish our skeleton which is under constant renewal throughout our lives. x

Daisy-Roots profile image
Daisy-Roots in reply to S4ndy

Thank you. I know, it's just painful, so I do a bit, rest a lot. Yesterday I managed 4500 step + swimming + Pilates. I'm trying! I'm just exasperated it got to this before I got any sensible advice.

S4ndy profile image
S4ndy in reply to Daisy-Roots

Well done! The most I have managed in a day is 3000 steps! That was over a 24 hour period, using my rollator and maxed out on painkillers! Its not easy

I have a cunning plan though, I need incentives to walk so have taken to borrowing my neighbours dog, a tiny chiuawa and we walk around the playing field behind our flat. It takes my mind off the pain watching his antics and he's happy to ride on the seat of my rollator if he gets tired, which he doesn't :)

Daisy-Roots profile image
Daisy-Roots in reply to S4ndy

Sounds a good plan. It's way down on my pre bursitis levels but I'm happy as long as I can do a bit. The thing that works for me is doing a few minutes, prob only 4-5 then resting about 20 mins. Only possible as I'm not working at the minute. Thanks for your support. Makes me feel better about myself.

Blearyeyed profile image
Blearyeyed in reply to Daisy-Roots

Great to hear about the swimming lessons , a little tip that I have taught is rather than doing the crawl or breast stroke, to reduce the stress to the joint and give you the closed knit muscle exercise that is better you need for joint issues try this.

Use crawl legs ( paddling up and down legs ) and breast stroke arms ( with small slow circling not over extending the stroke) .

As Sandy says , a liesurely pace not speed is better. You are not trying to create the movements that lift body and head out of the water needed for distance or speed swimming .

Legs should also be fluid and not forced deep into the water but kept closer to the surface so strain is kept off the joints.

Always keep your neck muscles relaxed and breath with your strokes to prevent tension causing swimming to be hard or painful. It also increases how much you can do by making the stroke easier.

Laps should be built up very slowly with regular rests when you can simply tread water and do circling movements with the arms for added muscle toning.

Walking in the water with a depth that just hits your waist is also incredibly good exercise.

Also drink some water while swimming as well as before and after as hydration is important to stop overheating .

I also keep a flannel in a waterproof bag that I have soaked in cool water , so that if I feel that I am overheating I can cool down my head and neck with a little wipe.

Back stroke with gently paddling legs but using your arms down by your sides pulsing them like the body of a jelly fish is also a nice technique that is both relaxing and toning without putting too much resistance on the joints. It is easier on shoulders and hips.

Use noodles or floats for buoyancy as long as you feel the need to , they are also useful for aqua exercise for balance and support too. You can just ask at reception at the pool if you need to use them.

Pool exercise , like class or gym exercise should also start slowly if you are not used to it or have a medical condition starting at 20 mins of activity in an hour then after a number of weeks increasing it by five mins a time . Regular rests just floating and relaxing in the water also benefit you. And use a nice warm pool as a cold one does affect how well you can work your muscles .

These are some of the tips I worked out which seemed helpful for new mature swimmers and pool users with health issues many years ago ( feels like centuries!😋😂) as part of my years working as a lifeguard and swim instructor , I find them so useful for myself now.

Daisy-Roots profile image
Daisy-Roots in reply to Blearyeyed

Thank you, I have been doing a hybrid one legged sort of swim. Bursitis a bit better so now I can use 2 legs again. Thanks for valuable advice. A separate chat for exercise, do's n don'ts would be useful.

Mrsd12f profile image
Mrsd12f

Very helpful. Thanks!

SheffieldJane profile image
SheffieldJane

Thanks for taking the trouble to do this post!

Pam47 profile image
Pam47

Thanks for this. Very helpful.

Allsgrandso profile image
Allsgrandso

Thankyou 🙏

nickm001 profile image
nickm001

I would like to add comment to:

"On strength training. All muscle strength training relies on micro-trauma to our muscle fibers. ie we damage our muscles so that the repair themselves stronger. This is a natural process but obviously when you lift heavy weights or do repeated strength exercises more muscle fibers suffer micro trauma."

Very true. However there is added obstacle - prednisone changes metabolic process of protein reconstruction and inhibits muscle repair. Trying to build muscle mass can have the opposite effect - it can be muscle wasting caused by strength training. It has been shown that endurance training at low to moderate level helps to neutralize negative effect of the prednisone on muscle rebuilding. Combination of strength training and endurance training is the only way to recover muscle mass for people with PMR.

S4ndy profile image
S4ndy in reply to nickm001

More great info. Thanks x

Blearyeyed profile image
Blearyeyed in reply to nickm001

Definitely , a light strength training but increasing endurance and flexibility of movement regime is the key to muscle improvement rather than muscle loss.

People also seem to forget ( including the odd physio) that building joint , tendon and muscle strength is not about doing weights , and in fact more work needs to be done to the core of the muscles before weights , even small ones, should be used to create the support to prevent damage to ligaments that can become lax with steroid use and inactivity.

Rebecca6 profile image
Rebecca6

Thank you so much. 65, I have started strength training but ended up exhausted or sore. Your advice makes sense and is the spur to start again, slowly.

Meggsy profile image
Meggsy

Thank you S4ndy! 🌻

Estellemac profile image
Estellemac

Thank you that was really useful. I thought swimming was better but I always had sore arms and shoulders after? I felt I hadn’t don’t a lot but the muscles felt like I had. I need to follow your plan it makes much more sense.

Blearyeyed profile image
Blearyeyed in reply to Estellemac

Yes , this is a thing that people don't realise while swimming its one of the best activities but can lead to over exertion.

You are working the deep core muscles and building up strength but often don't realise how much work or exertion you are doing because the advantages of water exercise from getting the added support to your body in water can mask how much work you are doing.

The added support of water is usually the advantage to swimming or exercise but often people still favour swimming strokes or repetitive movement in water that they did before getting health issues which aren't the most suitable for the joint issues they have or chronic pain.

The right adjustments in stroke and time spent in activity can make a huge difference to how water activities help and can increase the improvement you gain in muscle strength and pain reduction .

I wrote a few pointers to Daisy Roots higher up the post that you might find helpful so you can get the most from water in terms of supported exercise without the strain or tiredness stopping you enjoying the benefits.

nickm001 profile image
nickm001 in reply to Blearyeyed

Swimming can be really good workout, but it has to be done correctly. If you walk or run, style and technique are not as important. With swimming technique is everything. One needs to learn to glide thru the water and relax and use their core muscle to propel themselves thru the water. Here are simple rules for free style:

-body position has to be horizontal and balanced,

- use the body rotation to move your arms, not shoulder muscles

- use your core muscles to propel yourself

-glide thru the water, do not fight the water...

What I am describing is very efficient way to swim - invented by late Terry Laughlin known as total immersion. Using this method one can swim long distances.

Blearyeyed profile image
Blearyeyed in reply to nickm001

Learning good technique for swimming is important , Total Immersion techniques are very good but they do relate more to sports and distance swimming rather than the more adaptive leisure techniques required for exercise with joint issues or for Seniors.

All people could do with some advice and tuition in swimming or any exercise techniques if they have had health issues to learn better ways to use the bodies with their current mobility requirements or body changes.

I will say , I love running even if I can't do it now , and hope to get back to doing it eventually , so I am not bias in my sports but I do have to disagree with you when it comes to your comment on style and technique being less important in walking and running.

Posture and technique are equally important in walking , and especially running, to prevent injury and inappropriate wear and tear of our joints and bones from these activities over time.

Bad walking and running technique causes repetitive damage by putting excess pressure on the joints in an unbalanced way.

Just like sitting badly , poor walking posture causes great strain on the lower and upper back .

Much of the reason for tiredness and bad muscle aches and joint pains after a walk at greater distance or on varied surfaces is because of poor technique , balance and inappropriate footwear.

People, especially those without health issues, also get into the habit of believing that walking and running are things that just everyone can do because they play a part in daily activity , and believe they can instantly start walking or running long distances for exercise .

Not realising just like with other sports , these activities need improving and building up over time as you get stronger.

You only have to look at a person on holiday , going off for a 5 mile hike or extended sight seeing tour when they've been stationery most of the year then trying to get out of bed and walk around the day after.

Running , and especially leisure jogging without proper instruction, causes even greater impact on the joints and damages bone health if done poorly .

Unfortunately, people don't often recognise they need more help in learning better ways to walk or run to make it easier , less damaging , and importantly, more fun in the same way they understand they need some tuition in other sports .

This often stores up trouble with joints , cartlidge and tendons as we get older.

nickm001 profile image
nickm001 in reply to Blearyeyed

there is no doubt that proper technique is important in every sport. Resistance is proportional to your frontal body surface, speed and density of the environment you are moving thru. I was emphasizing the last factor - because water density is far greater then air and thus technique is proportionally more important.

PMRpro profile image
PMRproAmbassador in reply to Estellemac

I couldn't swim - too much repetitive shoulder action in particular. I found aquafit much better - a daytime class at a gym that encouraged older ladies was mainly over 50s but all levels of fitness and we had a good set of instructors who knew enough to be able to say don't do this or try it this way. Remember - any movement in the pool uses 7x the effort the same action takes on land!

enan-illuc profile image
enan-illuc

S4ndy,

Thank you. The information is very helpful.

jinasc profile image
jinasc

I could not resist posting this..........we used it after a trained instructor came and devised some exercises for people with PMR - when we published his handout - at the end we added:-

"EXERCISE FOR PEOPLE OVER 50

Begin by standing on a comfortable surface, where you have plenty of room at each side. With a 5-lb potato bag in each hand, extend your arms straight out from your sides and hold them there as long as you can. Try to reach a full minute, and then relax.

Each day you'll find that you can hold this position for just a bit longer. After a couple of weeks, move up to 10-lb potato bags.

Then try 50-lb potato bags and then eventually try to get to where you can lift a 100-lb potato bag in each hand and hold your arms straight for more than a full minute. (I'm at this level.)

After you feel confident at that level, put a potato in each bag."

I thought this might just amuse you all.

Hopefully when you do create a programme, as PMRpro said 'just rambling' I do so hope you put it on here and perhaps the national could add it to their website.

Lonsdalelass profile image
Lonsdalelass in reply to jinasc

Great, like it! 🤣 🤣 🤣

Blearyeyed profile image
Blearyeyed in reply to jinasc

I love it !!

I plan to start the potato bag exercise plan tomorrow😂😂😂😂😂

in reply to jinasc

It does remind me of when I worked on farms and did carry massive bags of taties around. Sacks of peas, rhubarb, sprouts, cabbage, spring onions....big bags if any of them stretch your arms. 😂😂😂

keepfitdoll profile image
keepfitdoll in reply to jinasc

That's really funny. I think I will try it.

Thanks, but all the advice for PMR seems to aimed at elderly people who aren't very active anyhow. I'm a fit, lean 58 year old who until PMR symptoms started, was extremely active doing marathons, cross country races etc. I used to run 5 times a week including hills & sprints. I'm not on Pred at the moment & my weight is crashing rapidly despite eating normally and not racing - just short training runs. I'm also worried about fat/cholesterol as my father died very young with a MI & my BP tends high, although I'm not on any medication. Glucose normal. 'm also vegetarian. What would you recommend before and after pred - I need to maintain muscle strength in my legs and CV fitness? My BMI is currently 20 dead.

PMRpro profile image
PMRproAmbassador in reply to

So were an awful lot of the "elderly people" you refer to. I was 51, many others were in their early 50s and fit. Men are in the minority - but Skinny Jonny on the forum climbed the Himalayas and ran marathons when PMR hit, he still does but spent some time in a wheelchair. Nick has documented his journey with PMR and his fitness regime. I suggest you repost this as a separate thread so the people you would identify with will see and reply to your comment.

Your weight is falling because of the illness - it should improve with pred just because the body isn't burning up. But if you are losing weight that fast it makes me concerned it may be GCA. You need urgent medical investigation in that context because it is just as risky as the Lyme's - and yes, I know you don't just have PMR/GCA but also Lyme's complicates the picture.

You need a dietician to advise on calorie supplementation - that may help but if you are worried about cholesterol I can't offer the usual calorie increasing advice.

But there is one thing you may have to come to terms with: "I need to maintain muscle strength in my legs and CV fitness?" may not be an option in the short term.

in reply to PMRpro

Tanks - I've lost about half a stone in around 5 weeks, but have lost 2 ones since last Autumn. BMI still OK, but in bottom range. Guess I should pile on carbs & protein for now until/if I go on Pred?

PMRpro profile image
PMRproAmbassador in reply to

That's the best you can do for now probably. The usual would be to say cream, butter, all the other high calorie stuff but if you have a cholesterol problem that isn't sensible.

By the way - I said in the shortterm. Skinny Jonny wasn't in a wheelchair for long but it did take over a year to get back to running even 5km. I don't see any point in gilding the lily - too many people come here having been spun a tale about how PMR goes away on its own in a few months to a year or so. It rarely does - so why lie?

Baileyw06 profile image
Baileyw06

How does using an exercise bike without using tension effect your muscles with PMR? The orthopedic doctor said it helps with hip bursitis and my torn miniscus in my knee. I was starting with 5 minutes and than adding time until I broke my rib which has healed Always something to stop the exercising!

in reply to Baileyw06

Without tension it might be perfectly fine. The only way to tell us have a 5 mins session and see what the result is. Then 10mins and so on. Maybe do it every other day at first. You will know pretty quickly I suspect. If you struggle at 5 or 10 mins why not try fewer mins but 3 times a day? If you manage it without doms being too bad then you can increase more. You have the okay with hip and knee so good luck?!

Baileyw06 profile image
Baileyw06 in reply to

Thanks, I will try that.

PMRpro profile image
PMRproAmbassador in reply to Baileyw06

How does it help with hip bursitis? Movement aggravates mine so I'm intrigued.

Whatever it is, the only way to find if something helps you is to try it once and assess. As Poopadoop suggests - very short and on alternate days at first. If it hurts after the first attempt, try less if possible. Later try adding a tiny bit of tension - with emphasis on the "tiny" for increments as well.

Baileyw06 profile image
Baileyw06 in reply to PMRpro

I will start easy! Maybe it was for my knee and not my bursitis .If it hurts,I will go back to my walking and exercise in the pool.

Devedaaee profile image
Devedaaee

This is a great thread and thanks to S4ndy for starting it. Can’t do what I used to and follow with interest. Maybe we need a men’s exercise thread for the formerly fit?

in reply to Devedaaee

There are lots of women who were formerly fit too!

Devedaaee profile image
Devedaaee in reply to

Ha ha! Sure. I was just supporting an earlier remark. Either way the move away from fitness is a good topic.

S4ndy profile image
S4ndy

Just going to add a bit about cycling.

This was something I really enjoyed and would like to get back to.

I used to cycle about 4 times a week pre-pmr. This kept me fit and helped my knees as its non-weight bearing. My ortho guy had said to carry on cycling as it would help my knees stay mobile.

I found that my balance was affected on the higher doses of pred in my first year. I did try but fell off a couple of times so decided that perhaps I shouldn't cycle until I was a bit better at balancing.

I tried again when I got down from 30mg to 15mg. While I was better at balance I found that sitting on the saddle really made my back hurt. I have a "Big Bum" (yes that really is its name) saddle on my bike which I found to be very comfortable :) I then tried transferring my weight to my shoulders and guess what, my shoulders hurt!

My knees coped better with the bike than they do walking.

However, after cycling about 1 mile on the flat going slowly and taking breaks I was in agony after, felt like I had been on the Tour de France!

So I decided to get an indoor small exercise bike to start to build up strength. I got one that you sit in a chair and use, not a full size exercise bike as I realised my back wasn't up to sitting on a saddle however big it was :)

So, off I went on the exercise bike. I set myself a target of 5mins no resistance. 2 mins in the sweat was pouring off me, felt like I was in the shower! After 5 mins both my legs were tingling and then the stabbing electric shocks began! I hadn't been pedalling fast either, just gently.

Afterwards my thighs and calves began to "burn" like I had done a spin class!

I honestly could not believe how my body was reacting as I had been used to cycling.

I spoke to my rheumy about it. He advised giving the cycling a miss for the time being until we know exactly what's going on with my back. He thought the sweats were due to pred. I already know I have several degenerated discs with bone spurs and nerve impingement which causes symptoms in my left leg. I don't have high blood pressure or any cardiac problems.

So I have two bikes in the garage and a little bike in the living room hidden under a chair. I asked my rheumy again about having another try this week and he said I could try the little bike for a very short time if I thought I could manage.

So I have dusted off the little indoor bike but so far haven't been brave enough to get on it!

Just for the record I was 46 when I was first told that I may have PMR. Was 54 when I started steroids and I am 57 now. I would have said I was healthy and fit for a woman of my age pre-pmr.

So I suppose what I am saying is that its not how fit you were before, its a case of accepting how you are now, today, this very moment and what you can do to keep and improve what you have got. Currently my goal is to maintain my posture, this being one of the most important things of all as without good posture you put stresses and strains on your body. The other goal I have is to keep my mobility and for me the best thing at the moment is walking with my rollator. Another goal is to keep my muscles flexible so I continue to do exercises in my chair to that aim.

They are all small goals but if my expectations was to do what I was doing in 2015 I would be very unhappy indeed.

So set yourself small goals, do what you can, don't beat yourself up or let others dictate what you "should" be doing remember my favourite mantra "this too will pass".

Keep doing what you can :)

Sandy x

PMRpro profile image
PMRproAmbassador in reply to S4ndy

"I suppose what I am saying is that its not how fit you were before, its a case of accepting how you are now, today, this very moment and what you can do to keep and improve what you have got"

Absolutely hits the nail on the head. Full square ...

Baileyw06 profile image
Baileyw06 in reply to S4ndy

So true, sometimes you feel you are not

Baileyw06 profile image
Baileyw06 in reply to Baileyw06

Hit the send by mistake! doing enough to stop loosing muscle but also don’t want the pain or a flare.

selkie2019 profile image
selkie2019

Thank you for the excellent advice x

mleginton profile image
mleginton

This is a wonderful thread! I want to add just a bit to it. I've had PMR for just over 2 years now. I am a Somatic Movement Therapist, Alexander Technique teacher, with training in Feldenkrais and Bowen. And, I was a professional dancer. I have a studio and offices. Somatic Movement Therapy means working with the body and mind at the same time....so in terms of fitness it means proceeding in one's activities with attention and awareness to internal feeling and thought at the same time that one is working a large muscle group (inside/outside mind/body). This point of view and way of doing can be applied to any activity, of course. What I have found is that if I do a ballet barre, or a Pilates session, or my Feldenkrais work, or my own alignment series or eccentric stretching and strengthening method, with this awareness at every moment of how I feel right then --- and not after exercising -- that I can do quite a lot without adverse consequences. In this way I have stayed pretty strong, and now that I am down to 4-5 mg of pred a day, I can focus on building strength up. Of course no grand battements or splits. That would be very dangerous to ligaments and tendons right now. I may never do the splits again -- but who cares?

Throughout this period of two years I did not stop working. I did have to watch my shoulders and arms carefully as part of my work involves lifting people, and doing hands on work, but I only had to actually stop work for one week. That was the week I was waiting for the test results and I had the full-on horrific score of issues. I could not roll over, sit up, reach my microwave, go up or down stairs, brush my hair, do my bra, walk to the car, get in the car without extreme pain, etc. I thought I might be dying. Once I got stuck in the bath tub. As soon as I had the prednisone I went back to work, out of necessity. At first my daughter assisted me for a couple of weeks with very heavy clients. I have a couple patients who weigh nearly 200 pounds. Then clients learned how to help me a little. This was a good thing anyway, as I am 64 and need to stop lifting so much, regardless of whether I have active PMR or not!

Prednisone helped, and I had to start at 20mg when 10, then 15, didn't work. But being mindful so that I didn't injure myself by over-tensing or overdoing was more helpful in my recovery from PMR and staying strong. I realize that perhaps I was in better shape than most, and that I am an athlete through and through, since age 9. Our bodies and minds are all different. I had to find a way to keep my arms and upper back strong enough without causing tendonitis, synovitis, or bursitis. I am on my feet all day. Lightening my weights to 1 pound, and at first using only body weight and isometrics instead of dumbbells has helped me stay quite strong. Now I am getting stronger because I am getting better and I mostly focus on core work and weight bearing at the barre. I've found simple ballet classes the best. I teach them, and they have helped me a lot. Perhaps in part because I know the pathways of movement and strength so well from the past. But I think it is the awareness ballet demands. I'd recommend it if you can find a really good teacher. You need to ask around and observe a class. Is the teacher really watching people? Correcting poor alignment? Tiring people? One should not be tired or panting during a class. Afterwards there should be a "I worked my whole body and mind" feeling, and not an over challenged "I couldn't pick up the steps! Argh" feeling.

Watching out for over- stretching was crucially important for me, because of prednisone's masking of pain. I believe that in addition to basic strengthening work, gentle eccentric stretching combined with breathing can approach the relief many have found with Bowen Therapy. The key is to stretch while controlling the stretch with some counter force in the opposing muscles. And then a full and complete release. This is what I have done. It's worked.

I suggest that Alexander Technique would be a good way for de-conditioned people to begin to build themselves up. This is because it requires mindfulness and good alignment (posture), works a lot with getting in and out of chairs (in itself strengthening), walking with good gait, and a minimum of tension. AT is good too because it leads to muscles and ROM working well in proportional forces. And, it is good for injured and bad backs. I use this work to help people learn to take the strength and control learned in Pilates into everyday life. So often that strength gets left in the exercises studio and people return to their old habits of less that good use of their wonderful, truly magical, system of pulleys and ropes and stops and goes that are the human body's structure for moving.

It's also been my experience as a movement therapist who specializes in my private practice in relief for chronic pain and trauma, that the better aligned a person is the less pain and PTSD flaring they have. And one is never too old to change alignment (posture in motion) habits.

Feldenkrais Awareness Through Movement series are great for staying limber to the degree that is good and safe, and relieved the worst moments of my pain. I use this work with others' shoulder and hip pain, and recoveries from bursitis and surgeries. It's good for that too.

Eccentric stretching (like in Pilates) is, in my opinion, the best way to build or maintain overall body strength and flexibility during and after PMR. It puts you in the driver's seat for how much is good and how much is too much stretch and strength, if you practice your somatic awareness at the same time. You get stronger quickly without too much micro tearing. It's excellent for women past menopause. It helps you stay on top of of the structural changes to muscle, tendon, ligament, timing and release of contraction. Eccentric stretching can be learned quite easily, and when combined with good alignment work, can lead you into getting stronger in all of your activities, by using your body well. If you combine eccentric stretching with using your own body weight to load your bones, and some rhythmic work (Ruthy Alon is a good source), you can make a work out that protects bones and strengthens and lengthens your muscles. Muscles, ligs, tendons exist to move the bones, so if they are strong your bones are more protected.

In the States a report recently came out from Harvard Medical stating that the prior research on aerobic activity for older people, suggesting a need for 30 minutes per day, and touted for many years now, is wrong.

It stated that for most post-menopausal women 1.5 hours of activity per week was just fine. So... that is a 12 minute walk per day. A new report came out a few days ago that stated the health benefits of 1.5 hours of being outside per week being important. That sounds like a nice stroll in the nearby park, or for me -- my walk to and from work under the trees. I probably do walk 10,000 steps per day at work, but I've been doing it my whole life, since I learned to walk, literally (professional dancer, actor, professor of movement, therapist....). That would be too much for most people.

I am very grateful that my career is in movement. Of all the stress-caused illnesses that I could have contracted it is ironic and lucky to me that I got the one that actually improves with gentle movement throughout the day. I find that when I don't move, as on a weekend day where I loll about to rest and read a book -- the stiffness and the pain mount throughout the day. If I do move, it lessens.

Fions profile image
Fions

I'm interested in what you say about cheese and cream. My Nutritionist advised me to drop dairy products because they are inflammatory. I really miss them though!

PMRpro profile image
PMRproAmbassador in reply to Fions

Does it make any difference to YOU in terms of PMR pain? If you removed everything that nutritionists claim is pro-inflammatory you would eat very little. I tried leaving out most things at some point, none of them made the slightest difference.

What DOES make a difference for many of us is sugar and simple carbs. Take processed carbs and added sugar out and you can usually manage to avoid pred-related weight gain and reduce the risk of pred-induced diabetes. And it is healthier.

This is a long journey - there is no point at all in making yourself miserable by cutting food you enjoy and which fills you up.

S4ndy profile image
S4ndy

I gave up dairy for two years (and meat and fish too). It made no difference to me whatsoever.

I have been doing the Fodmap diet since Oct 18. During the foodmap diet elimination where I had to remove soya and lactose, my digestion improved. I am now in the rechallenge stages of the diet and I have found that eating small amounts of lactose doesn't affect me but a lot does. Butter, cream, yoghurt and cheese do not seem to affect me in small quantities either. When I say affect me, I mean worsen my digestive problems nothing to do with PMR pain.

I now have lactose free milk. I can manage a yoghurt to take my early morning pred with and as long as I don't overdo it can manage another portion of dairy a day.

I rechallenged Soya and found I couldn't tolerate it. I knew I couldn't tolerate soya sauce and msg before as it upsets my tum whenever I eat Chinese food. I love Chinese but cook my own now or order what I know I can tolerate.

I am back eatimg meat and fish as it became really apparent that I am intolerant to legumes, anything high fibre and quite a few fruits and vegetables.

Like PMRprosays if you gave up everything the so called experts tell you, we would eat nothing at all.

We each have to find our own tolerances and what suits our body.

Ronswife profile image
Ronswife

Thank you for this wonderful discussion. I think it will help me.

Capprice profile image
Capprice

Awesome tips and advice S4ndy. Just what the doctor ordered 😄

I haven't started swimming yet but your advise to stroll when walking and in the pool (because movements are repetitive) is something I wouldn't have considered. Thanks 👍

I'm now off to seek a private pilates person 🏃‍♀️x

Tamtan2 profile image
Tamtan2

Thank you 🙏🏽

Maisiek profile image
Maisiek

Thank you; just been to my first Pilates and could have cried- can’t even lie in my side without a pillow: but I have a sympathetic teacher ( altho she’s never heard of PMR ) so will persevere if it’s good for me: I have to get on with life but didn’t realise how much I can’t do 😢

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