Weak and painful muscles: I am becoming weaker and... - PMRGCAuk

PMRGCAuk

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Weak and painful muscles

Content1 profile image
19 Replies

I am becoming weaker and weaker and wonder if anyone has found anything that helps? I tried to stay active but am afraid over the last 12 months I have been in Thanks.

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Content1
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19 Replies

I think slowly and carefully increasing what you are doing. There is a good overview of exercise that may be possible in the pinned posts.

I started by just going to the gate initially but worked up every day a few mins. I leaned against the walls as often as I needed to. I still use the same principle walk sit , walk sit. I usually have a rest day as my legs do hurt the day after. I tried "pushing through" a few times but ended up immobile for days again. I even sat holding a cushion in front of me and slowly raised it as high as I could. Some days I am better than others. If I have 3 things out of the fridge, I make 3 journeys across the kitchen to put them back. It just keeps building on mobility and muscles. Good luck!

in reply to

Here's the post I mentioned about exercise from a qualified teacher...

healthunlocked.com/pmrgcauk...

PMRpro profile image
PMRproAmbassador

One gentleman on the forums was in a wheelchair after a flare that needed 30mg to get under control. He was despondent as he couldn't walk for more than a few minutes. This was at about Easter time 2+ years ago.

He started with walking to the gate and back, literally 2 or 3 minutes. The next day he rested to assess whether that had caused sore muscles. If not, he added a minute to the walk. If it was almost too much, he stayed at the same level until he did have a day without any pain. He continued to do that until he could walk for about half an hour in total - 15 mins out, 15 mins back. Then he worked on pace as well as extending it, one or other but not both at first. He has always been very accurate about the times by the way.

By the autumn he was well enough to try skiing! He is a ski instructor in New Mexico - and at the end of the season got an award as the best instructor as voted by the other instructors. The following summer he cycled with his friends, up and down mountains! I'm not quite sure when but he did overdo it and has had to deal with muscle injury as well as PMR but is getting there and did ski over the winter. He is over 80 - I met him a couple of weeks ago and in great shape with no visible sign of PMR. But 2+ years ago it was a very different matter!

The secret is to start VERY small - done the way I describe it sounds slow but the time builds up surprisingly quickly. It will probably help if you get a pair of walking poles - they aren't a support but help your balance a lot.

Good luck!

SheffieldJane profile image
SheffieldJane in reply to PMRpro

What an inspiring story!

PMRpro profile image
PMRproAmbassador in reply to SheffieldJane

He is such a great person!

SheffieldJane profile image
SheffieldJane

I don’t need to tell you that the more sedentary we are, the worse this gets. It is hard to motivate yourself when everything hurts. Do you think that you have become depressed? Being confined indoors for 12 months must be very lowering. Perhaps you should seek your GP’s advice about this specific issue. Gentle Pilates or suitable exercises in your local pool might help. If you are not up to this yet, perhaps your doctor can help.

Hellyowl profile image
Hellyowl in reply to SheffieldJane

Pilates are great for our conditions. You shouldn't be able to hurt yourself with pilates

Lauren103 profile image
Lauren103

Hi

I was diagnosed with GCA and PMR 3 years ago. I have tried everything to keep some degree of muscle strength. I can’t walk for any distance because it causes pain in my lower back. I signed up for Pilates but it seemed a little aggressive for me. I have a yoga routine but I can only do bits and pieces of the routine as sometimes I feel that it makes my discomfort worse. Here’s what I have tried that may help you too. I bought one pound wrist and ankle weights. I strap them on and do some of my regular chores. I think my arm strength has improved. Sometimes when I used to try and flex my arm muscles- like when I had to squeeze water out of a sponge- my arm would actually shake. That doesn’t happen any more. If you decide to try this, do be careful. Ease into it by gradually introducing the weights for short periods of time. In the beginning I would not wear the ankle weights at the same time as the wrist weights. Try folding laundry with the wrist weights on or vacuuming with the ankle weights in place. Clearing the table or brushing your teeth. Small things done on a daily basis have helped me.

PMRpro profile image
PMRproAmbassador in reply to Lauren103

If Pilates seemed too aggressive you were probably trying to keep up with others - Pilates should be adjusted to YOUR level for you by the instructor. It is probably an ideal exercise for helping back muscles when it is done properly! But in a class there is always the temptation to do more than you should too soon.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Lauren103

Would agree with PMRpro on the Pilates front.

I’ve been going for 4 years now, started when I still had GCA. It, like most exercise, needs to be tailored to your needs and ability. If you are doing it in a class, you are probably not getting out of it what you should.

If you can, it’s probably better to have a one-on-one session initially with the instructor, and then maybe progress to a small class, say around six where you can be monitored properly.

SheffieldJane profile image
SheffieldJane

My Pilates instructor just does tailored exercises for my husband and I. She is also a Physiotherapist and just across the road, so I have no excuse apart from general malaise.

Pollyanna16 profile image
Pollyanna16 in reply to SheffieldJane

Totally agree with the last 2 comments. Possibly wrong teacher, maybe too large a class. I can thoroughly recommend a physiotherapist led class & even better 1 to 1 until You feel a little more confident. If she/he is a good teacher she will make sure you are doing the moves correctly & give you alternative moves is something is too much. Good luck.

Noosat profile image
Noosat

You will have valuable comments from experienced people on this site. My small input is that I set small goals and have found I do a little better each week. My legs seem to have lost all the strong muscles they used to have, so I am trying to gradually rebuild. Fortunately, I have a dog who need to run, so no matter how I feel, several rimes a week I believe that I must get her to the park where she can run free while I walk, very slowly. Other days I make sure I move around the house and to the mailbox etc.

Christophene profile image
Christophene

I had been sedentary for 2 years when PMR had me in it's grip. I had always been an active person. And an avid gym-goer; now I go to physical therapy 2x week to regain strength and endurance with an ultimate goal to go up and down stairs normally as opposed to one baby step at a time. That was my solution- in fact going this afternoon. It's good psychologically. Everyone there has an illness or an injury which gives us all something in common and we laugh alot ; it's a happy place.

There are many DVDs on exercise for various ailments; I have one called Yoga For The Rest of Us and Tai Chi which is gentle, but good for balance. Many are on U Tube.

Some form of regular exercise is important, even regular walking , a little everyday until you can increase your time by 5 m., 10m.

Content1 profile image
Content1

Thank you all so much for your help and encouragement. Local physios referred me back to the GP as they said my pain level was too high for the sort of exercise they could offer!! The GP said take more pain killers!! I asked to be referred to the pain clinic to which he said he would but didn't really think they could help! Needless to say I am still waiting, but am at the surgery tomorrow so will ask the receptionist to check that the referral has actually been done. I have purchased a DVD called Use it or loose it, so lets hope that helps. Thanks again.

in reply to Content1

Pain Clinic seems sensible. Years ago I found them very helpful and got better pain meds and other stuff. At mine I had access to psychologist to plan recovery/ rehab and a physio who was used to dealing with pain. You need to get it sorted so you don't get hypersensitive to pain.

instituteforchronicpain.org...

Content1 profile image
Content1 in reply to

Oh, nothing more please x

in reply to Content1

Just trying to get ahead of the game! Hope you get to pain clinic asap. 🌻🤞

Content1 profile image
Content1 in reply to

Thanks 😀

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