Weakness and heavy legs

[simps999]

I have had PMR since July 2022.I am currently on 5mg having had various flares and increased the pred.

My pains in my shoulders and buttocks have decreased but I am still struggling to exercise and walk that far without my legs feeling heavy and generally weak.

Some days are better than others and if I have been too active that's when they are worse.

My GP tested my muscle strength at my last visit and didn't find there was a problem with the muscles

I have also had lots of different blood tests and all are fine , including inflammation markers.

Has anyone else suffered from the same ?

Another question ..

Has anyone found any alternative therapies that have helped them ?

Thanks

[DorsetLady PMRGCAuk volunteer]

Now you have asked the question you will see loads of related posts …

And if you do too much on days, then invariable a bad day follows, you have to learn to pace your activities - this may help - oodles of info included -

healthunlocked.com/pmrgcauk......

At the dose you are at, your adrenals are struggling as well - so maybe have look at this-

healthunlocked.com/pmrgcauk...

TBH, as you are down to 5mg I wouldn’t be looking at alternative therapies for your PMR- or do you mean for your weak legs? If weak legs -then Pilates, tai chi, Nordic walking …

[simps999 in reply to DorsetLady]

Thank you for your reply. As always so prompt and very helpful. I did mean for pmr or general autoimmune .when I was in my thirties , a long time ago ! I suffered with urticaria and had acupuncture and it seemed to cure it .

Just wondered if anybody had had similar that may just help .

[DorsetLady PMRGCAuk volunteer in reply to simps999]

Okay -well Pred is really the only guaranteed med for PMR -although acupuncture may help for add-ons etc -or Bowen therapy as suggested by PMRpro.

[simps999 in reply to DorsetLady]

Ok thank you both

[PMRpro Ambassador]

"if I have been too active that's when they are worse"

You can't dive into exercise as if nothing has happened - you have to start from scratch and find out where your limits are and work from there. You start with 5mins exercise and next day assess how you are. For example, walk for 5 mins out and 5 mins back. If that was OK, add a minute each way, Next day rest and assess, Keep doing that until you feel it the next day and then stick at the level below for a few weeks, If you feel OK with that, then start adding minutes again. The rest days on alternate days are as important as the exercise days. Your muscles have been ravaged by PMR and pred and years of less activity. Muscle STRENGTH is rarely a problem with PMR but condition is.

I found Bowen therapy useful for back muscle problems but in general, a good diet with plenty of protein gives you a good basis. And above all, pacing and resting is essential.

[simps999 in reply to PMRpro]

Thank you for your advice. Thankfully my back issues do seem to have improved.( Fingers crossed !)

[SheffieldJane]

I attend a Joint Pain Programme at my local gym.( Nuffield) It costs nothing and most participants have arthritis, one has Rheumatoid Arthritis, then there is me. It is a 24 week course that is designed for people with joint pain. You do not even have to have a doctor’s referral but they do ask for a medical form giving permission to be provided for things like blood pressure and diabetes. So far it has improved my mood and flexibility but on my third attendance I was in significant pain and had to sit out some of the circuit trading and use of the treadmill and other machines like rowing machines. There is a pool there and Aquarobics and mat work will be involved. We get a lecture about exercise and nutrition. Classes are twice a week. We have full use of what the gym has to offer. I think it is a good thing and the discipline of it suits me. The teacher will spend one to one time with me to find out which exercises are causing pain.

Prior to this I mainly walked on the flat. This is more demanding. My muscles are not as weak as I feared.

[agingfeminist]

There are a few of us on here who have steroid induced muscle myopathy...my muscles visibly wasted away. Exercise and walking do not help..though I do keep moving in a limited way, in the hope there isn't any further deterioration. I can still, just about, lift a 2/3 full kettle (to pur a cuppa). What I really lack is stamina. I lose physical energy in minutes/seconds. 100 meter walk is my maximum and then I rest after it. I sometimes manage 10-15 minute vacuuming...feels like exercise with a purpose.

Qi gong has been possible (video online)

Good luck!

[Smithie49]

Hi. When I first developed PMR but before diagnosis, my legs were one of the symptoms I noticed. They felt like longish lumps of rubber instead of normal legs!!! Three years on, it felt like there was a tight band around my thighs which made walking fast very difficult and any walking tiring. This has eased of late so I feel more normal. Could this be a positive effect of methotrexate which I started at end Dec? I've been on 7.5 mg pred since then - I had a return of stiffness when I tried to get lower than that

[iblue]

Hello, I have become a member at a large community gym/pool facility. It’s all heated in the pool area and offers many different programs/classes as well as exercise equipment. In the pool area there is a circular ‘lazy river’ which I began using for walking exercise to bring my muscles back up to speed. Several years of PMR and Prednisone have taken its toll. The lazy River assists my muscles and joints with movement in the flow of the water, and allows me to pace myself by pushing to move faster, just floating leisurely, or resisting the flow. I’m sharing this because it has been my therapy that I can do, even on the bad days, as just floating in the warm flowing water eases my pain and releases stress from my body. I’m slowly tapering from 2mg and easing my body back into shape. Patiently, with what works best day to day.

[WhatNoCarbs]

Hi. I’m not quite the same but can sympathise. I’ve been on 10mg pred since Oct ‘22. I have slowly been increasing my walking distances after a bout of anaemia and have recently realised that after a mile or so, if I’ve been a bit energetic, like going uphill, one of my legs will suddenly lose feeling and the road feel like rubber. I stop as a result, the feeling goes away and I carry on for another mile. This is not specific to either leg. Most weird and a bit disconcerting! I guess it’s PMR related going by what everyone has been saying.