Im as weak as a kitten and struggle to lift bags of shopping or a pan from the aga. As I’ve mentioned in previous posts, ive got barely enough energy to get through the day without doing any extra exercise. Having said that I want to do all I can to help myself so wondered if anyone had any suggestions.
If anyone’s in Kent and fancies a ‘buddy’ at an exercise class, let me know.
I’m determined to get stronger but it’s so so hard......😔
I wish so very very much I was near u, but I’m in Bewdley Worcs. but I really understand how u are. Good luck xxxx
Aw. Thank you. It’s so hard trying to get healthy people to understand. ‘Just join a yoga group’ they say. Not as easy as that when some days you can’t even get out of bed.
Is there a Pilates class near you? Also have you thought of swimming?
There are quite a few classes but I want to go with someone who’s in a similar position.
Hi Paula. Pilates is quite a “relaxing” sport (if there is such a thing)! Talk to the teacher, tell her/him your health problems. You would also be out of the house and meet people, perhaps pick up a few new friends.
Hey Paula , sorry to hear how weak your feeling , frustrating or what, I know that one , soo my friend x your fingers right now as I am in Kent 😁so where are you . I do not drive now as unable to , but that’s never stoped me !!
Maidstone is my nearest town. How about you?
SNAP 💥now will you be at the next meeting on the 24th in Maidstone ? I’m smiling here cos someone heard my pyayers
I will indeed! Looking forward to meeting you.
Now don’t be looking for the monkey !!! But it is my character lol should we wear our name badges ? This’ll be my first meeting so not sure what to expect
Monkeymate! Good for you!👏🏽👏🏽
How nice you two will now be mates!
Here’s hoping 😁
I went for the first time a few weeks ago and I’m SO glad I did. You’ll find it really helpful. X
Way good for you!!!👏🏽👏🏽
Yes I could end like Pamela Anderson lol
Hi Paula i empathise so much with u . Its the brains willing but the body not engaging.,like u i want ti get fit but am si weak and hv a terrible tremor due to the steroids which is exhausting me . I dont think u should push urself to exercise just start by doing little things at home even myb a bit of dusting . Or hanging the washing out its all exercise if u cant do these little chores dont even think about exercise classes your body is not ready. But try do smthing nice daily spend time reading a magazine or if u hv the energy bake a cake. Put some make up on things that make u feel good about urself.,just getting out of bed is iften a challenge im sure so take time ti just b ok with yourself for now.,dont drain your precious energy by ‘if onlys’ they dont help and they feed negativities about yourself. I do hope u gradually get stronger., i dont know what has caused your weakness sorry luv big hug wish i could give in person but i live in dorset weymouth xx
Good advice, thanks. I work and sleep - no energy for anything else. Will try and do more chores or do things more energetically. So hard ....... 😔
Hi Paula-kent, I know exactly how you feel. I was diagnosed February 2017 with PMR/Fibromyalgia and watched my muscles and strength waste away. I am so weak now I cannot lift a tea kettle without using 2 hands. I do walk everyday, put on makeup, make the bed and pick up around the house but after that I'm so exhausted I lay on the couch and sleep at least four hours a day. Every now and then I have a good day and go to the grocery store. My Sister and husband help put away groceries, it is such a struggle. I don't live in the UK but wanted you to know, you're not alone with your battle. I will keep you in my thoughts and prayers and hope for a full recovery.
So many people struggling with this horrible condition. It makes me cross and sad to read your reply.
I'm sorry, I didn't mean to make you cross or sad, just know you're not alone and prayers are being said. Take care and make it a beautiful day!
Not cross with you, just your situation 😉
Hi Paula sounds like you may have found your exercise buddy. Sorry you are feeling so weak do let us know how you get on with whatever class you decide to join. All the best.
Hi Paula - 6mths ago to the day almost, I could barely walk around the ward after my surgery and was so weak I didn't think I'd ever walk properly again. And when I got home it was hard picking up the kettle for a cuppa - I had to tip it most of the time. But now I walk a mile round the park almost every evening despite still having the GCA and on steroids etc, and I can make tea single handed again lol. I still get exhausted and tired and still doze off 2 or three times daily for an hour or too, but I guess my message is that your strength will come back very slowly. But it just takes time, so stay motivated and optimistic and don't give up - we're all rooting for you.
I love this site! There’s so much support and always someone there to lift your spirits and help you believe that things will get better. X
Hi Paula-kent, Like you I am very weak and would not be ready for an exercise class. I found a couple of exercises for people in our position which I have found helpful. I will try and explain them and you might like to give them a try.
1. Sit comforatbly on a straight back chair. Imagine there is a £1 coin under your foot. Touch the coin with your heel and then your toe. Try and repeat 10 times for each foot.
2. Keeping your heel on the floor lift your foot and bring it forward as far as you can. Repeat 10 times for each foot.
3. Using something you can hold comfortably in you hand, about the weight of a can of beans, keep your elbows tucked into your waist and palms upward, raise arm to shoulder lifting and lowering SLOWLY , aim to repeat 10 times increasing as you can.
These 3 little exercises take no more than a few minutes but I really do feel some benefit.
I did buy some 250g weights from John Lewis. They only cost a couple of pounds and they are comfortable to hold and look the business!! Not necessary though.
Very useful, thanks. I bought some hand weights from Amazon. They’re sitting untouched on the side as I wanted to be sure is not be causing any damage by using them. Have been yo-yo-ing with steroids recently and can’t seem to find a level that works for me. The last thing I want is extra pain caused by using weights.
I’ll let you know how I get on. Xx
Should be OK so long as they don't weigh more than 250gms and you use them sitting in a straight backed chair with you elbows tucked into your sides.
Buddies make exercise easier and more fun. Can you try Tai Chi or Quigong? Not strenuous but still something until you are stronger. I started to exercise immediately after diagnosis but couldn’t do nearly as much as pre PMR. Over time, I was able to increase duration and weights. I’m not where I want to be but grateful for my progress. I still get tired (4.5 mg Pred).
Quite like the idea of doing something a bit different so will look into your suggestions.
Glad you’re making good progress. X
Did you see "Trust me I'M a doctor" the other night. It had exercises to do sitting or standing. I have started these and hope to build my strength.
I go to a music and movement class for people with chronic illness. We do lots sitting down and each of us move at our own pace. Look on the internet for seated exercise and I'll bet you'll find something. Helps build muscle and improves stiffness.
Whatever you do decide to try - don't jump straight into a whole class at full tilt. Start with a short amount and build up over time. Don't commit to a class you might be wasting money on or join a gym unless you can go for a few minutes every day to start. Or go to an aquafit class that you can do at your level - VERY low to start, aquafit is brilliant but hard work for PMR ravaged muscles at first.
Even going for a walk with someone will do to start and just start with 5 or 10 minutes (or however long you know you can manage OK) - round the block or to a cafe/park bench and back. Rest the next day and see if you are sore - if not add a couple of minutes. Rinse and repeat. Doing 10 mins twice a days is easier than 20mins at once - I could ski but it had to be short runs with a rest on the lift inbetween.
Your muscles are still intolerant of acute exercise and if you do too much you will be very sore the next day (delayed onset muscle soreness it is called) and when you have PMR it will take much longer to go away than it did when you were healthy. It will stop you exercising because it hurts - and that isn't the idea. It is the same if you try to lift too heavy a weight - your biceps will repay you next day by being so painful you can't use them. So start small and build up slowly. If you want to do weights get a couple of 500ml water bottles, quarter fill them with water at first - and then add water bit by bit over time until eventually you get to full and are lifting over a pound!
There is a guy on the patient.info PMR forum who at Easter last year was on 30mg pred after a flare that had put him in a wheelchair. He started with just a short walk to the corner and back and built up slowly as I have described. By last winter he was able to do his usual ski teaching with children for the entire season. This summer he's been out cycling 20-30 miles with his friends. Michdonn is 80 and lives at 2,800m. If he can do it - anyone can!
Building strength is so important but I would urge caution. You want to avoid increasing inflammation which even slightly over-exercising can do and might not be apparent until it's too late.
Please go very gently as others have suggested and if you go to a yoga or pilates class or join a gym find a trainer who understands about inflammatory autoimmune disease and how to help you.
Gentle walking outdoors, in nature if possible, is great for moving, de-stressing and helps with sleep and bone density too.
I've done a strengthening programme designed for people with autoimmune disease and the best thing I learned was simple easy exercises to strengthen the core muscles which then support the whole spine and torso. This helps reduce pain, helps with balance and stability, prevention of injury, increases energy and makes daily tasks easier like climbing stairs or getting out of a chair!
You can do this at home. You just have to be able to lie on the floor!
You'll find plenty of guidance, videos etc for building core strength online and for free 
I'd probably choose one for 'seniors' because they'll be the gentlest...softly softly....
"You just have to be able to lie on the floor!"
I can lie on the floor OK - it's getting up again that is the problem!!!
Ha ha ha! Yes I know what you mean but actually you can do the basic core strength stuff lying on a bed or sofa or even sitting in a chair too! I used to find it quite hard to get down and up from the floor but thanks to these exercises I don’t struggle with that any more.
I wouldn't have a problem but I can't kneel on either knee which does make it painful! Long gone are the days when I could stand from sitting on the floor with my legs crossed!
I couldn’t kneel either and it was excruciatingly painful but by doing 1/2 a second, then a second and building very very slowly I can now kneel on either or both knees for a short time and the more I do it the less it hurts. I didn’t think this was possible. I’m amazed at how the body can respond to very gentle and repeated practice.
🤣👏🏽🤣
Follow up about my chest infection 
Tried to use my new stationary bike for just 10 minutes 
sudden loss of strength 
Information required about PMR
Should I up the pred?
