Balance and muscle strength issues

[Blues1]

Balance issues and loss of strength in legs is progressively a problem to me. I have tapered my pred dose down to 5 mg gradually having been diagnosed withPMR in April 2019 and thought this problem would improve as my pain has decreased. I have difficulty with the stairs and walking uphill but on the flat it's ok although sometimes I feel like I'm wading through mud. Generally my pain is ok , still take paracetamol for lower back and hip pain if needed but it is manageable, and I feel confident that tapering is the right thing to do. Any advice please .

[SnazzyD]

The heavy no oomph in the legs feeling can be poor adrenal function before your natural cortisol production comes back on line. Also, deconditioning from the illness and Pred can be really quite profound. I was 54 and very fit before all this nearly 4 years ago and I’m very much finding I’m having to teach my muscles how to be strong and flexible again. Throughout my journey I walked a couple of miles a day so wasn’t exactly slacking it, but other than walking I’ve gone to pot. However, before my adrenal function got better on low doses I would start out on a walk and suddenly feel like my tank was empty and it definitely wasn’t low blood sugar.

[Blues1 in reply to SnazzyD]

Yes that's exactly how I feel

[PMRpro Ambassador]

It probably won't improve on its own - or even necessarily until the PMR disappears altogether if the balance problem is linked to it. Maybe some balance exercises would help?

youtube.com/watch?v=atMJ2op...(Not working as expected?)

Sorry, bit irritating but it does show the things to start with!

[SnazzyD]

Adding to PMRPro, my balance muscles as in those little ones that one forgets about were shot. My hips and ankles have had to be sorted before anything else. I had a great physio who I went to to rescue my pelvic floor. She noted my useless hips and lower abdo muscles. Turns out my pelvic floor was doing it’s best like a string bag being expected to carry a weekly shop due to poor surrounding muscles, instead of carrying a light picnic.

[Blues1 in reply to SnazzyD]

I had a hysterectomy in my 40s and have a large scar and my lower abdomen muscles have never been right since, I like you say have a weak pelvic floor, all contributing to lower back pain.

[powerwalk in reply to SnazzyD]

Snazzy, do you think the physio did more to help rather than trying to do exercises yourself?

[SnazzyD in reply to powerwalk]

She assessed my problems and then prescribed specific exercises. She also did deep tissue massage when I got tight bits initially.

[powerwalk in reply to SnazzyD]

Right, thank you.

[Viv54 in reply to SnazzyD]

That sounds just what i could do with, im waiting for the lockdown to end. Sadly i will have to find a private Physio as we have at least a year waiting list !The thought of a deep massage is bliss !

[PMRpro Ambassador in reply to Viv54]

I have had both approaches. A few sets of physio appointments were for therapeutic massage but this most recent set a different therapist has worked on very specific area that are causing problems - yesterday was just the left shoulder/upper arm and some neck work I've found the manual mobilisation approach this time has achieved a lot.

[Viv54 in reply to PMRpro]

Great to hear, I'm sure it will help me, I'm doing an online gentle exercise video, I'm defiantly not as stiff, but a massage would be bliss!.Just have to wait till lockdown is over !😊

[SnazzyD in reply to Viv54]

It was private. I’m afraid the NHS physio ‘treatment’ was pitiful. He didn’t know about Pred or it’s effects either. All I got was a sheet for Achilles’ tendon exercises and pelvic floor exercises with no actual eyes-on assessment of any other part of my body.

[Viv54 in reply to SnazzyD]

Oh dear, will look into it.Thanks.

[PMRpro Ambassador in reply to Viv54]

During a webinar with Prof Mackie a few weeks ago I gathered the Leeds physio department also employs similar techniques to what I get here - my experiences in the UK have been pretty poor too other than two wonderful ladies in Durham who had both had similar problems so knew exactly what i was on about. In the webinar it was said that really going privately was the most likely way BUT no-one can afford that for long! What I did find very helpful was the Pilates available at my gym and which was included in the monthly fee for weekdaytime membership.

[Blues1]

Yes exactly

[Kendrew]

Hi Blues1. Firstly, I'm not a physio but I have.... and indeed do....experience that heavy, weak feeling in my legs sometimes when I go for my daily walk.....particularly at the moment whilst I'm just above 10mg. On odd days when I'm walking uphill, although I've no pain, it's felt a bit like walking through treacle and the extra effort required been very tiring.

Seeing the muscle deterioration in my calves and upper legs has been a little alarming, particularly as I was very fit and healthy prior to PMR. However!!....... before Christmas, Yogabonnie introduced a few of us to yoga, offering a few zoom classes. I did a bit of research, read how good it is for osteoporosis and therefore good for developing muscles also. (Healthy, strong muscles aid the development of healthy, strong bones.) On YouTube, there are lots of different sessions to choose from, but there consistently popped up a title, 'The 12 Poses for Osteoporosis'. I do these every day now (just 30mins) and after just 4wks I definitely am starting to feel some improvement in leg-muscle strength, balance and core strength. The poses are simple to do, with the emphasis on NOT doing more than your own body will allow, so anyone can do them.

Not only do I find that half hour so relaxing and calming but the gentle stretching seems to ease any little niggly aches or pains in arms and legs too. I'm seeing a slow but steady improvement and enjoy it so much, that I now 'cherry pick' other sessions also to provide a bit more variety and develop my general yoga skills further.

I know yoga isn't for everyone, but it's SO good for developing bone and muscle strength, and a gentle and fun way to do it. Might possibly help you and be something you'd maybe like to look into also?

[Blues1 in reply to Kendrew]

Thank you yes I will look into it and give it a try

[Logic]

I had the same problem with balance as tapered and got down to 2 or 3 mg. I remember being very nervous outside on slanted sidewalks. I also fell once so I was afraid of falling. It went away on its own eventually.

[Noosat]

After 2 plus years, I have started tapering to 1 and an half mg. All the way I have found my strong competitive runners legs lacking strength. Trying to improve muscle strength/tone is difficult. I walk as much as I am able each day and hope the continual action will gradually strengthen them Good Luck Occasionally I am bit wobbly, so try to work on balance.

[Thelmarina]

Just adding a couple of things. I am doing a gentle online course in Pilates with the exercises taking ten minutes a day and using a chair. You do need to go slowly at first with any sort of planned exercise and I do them alternate days so that the muscles can rest. I also had a prolapse and surgery to deal with it. I was recommended Kegel8, an electronic devise inserted to strengthen the pelvic floor. Sounds much more scary than it it! 😀. I use that alongside the usual exercises to keep the floor strong and it does work. Good luck!

[Hidden]

As I'm really new to pmr and pred started taking pred 23rd dec 2020. Ive done a lot of reading not sure how much I believe or how much is true but did read that exercise bike or an air Walker was good to strengthen legs. Maybe someone with a lot more experience would be able to say if they think this would help

[PMRpro Ambassador in reply to Hidden]

It is - but whatever you do it must be at your level and not doing too much. Normal walking is very good - because natural walking varies from step to step, the surface, the speed, the other movements you make while walking all change. On a machine (airwalker or crosstrainer) there isn't the same variation and it is very easy to do too much. A treadmill also has little variation. And identical repetitive movements are not good in PMR.