PMR & Concrete blocks tied to legs feeling, when walki

Hello everyone. Do any of you have this problem when walking? It has been like this for me ever since diagnosis last August. I had a face to face appointment with my GP yesterday about a particular side effect from prednisolone & mentioned to him also about how difficult it is walking any distance. He said I should not stop walking but try to go with it so that I can get as much exercise as possible to avoid muscle wastage which happens with this condition apparently. . I am beginning to think that the muscles on my lower leg above the knee should be exercised to strengthen them. Anyone else have this problem & managed to improve the problem by specific exercises?

[DorsetLady PMRGCAuk volunteer]

Also known as ‘walking through treacle’….could try a sitting down leg exerciser - like this’ just look online..a,so have a look at YouTube for lower leg exercise(for seniors) -

Example

[Carriemetz in reply to DorsetLady]

I got one of these for exactly this reason. It did help, though as pred has gone down, the ‘fence post’ feeling improved as well anyway. Still use it occasionally when my back feels weak. It seems to help with that too. Worth the twenty-two quid!

[Hidden in reply to Carriemetz]

Probably give one a try. Thanks

[Koalajane]

Yes, I just built up my walking slowly and still walk with the aid of a walking stick

[123-go]

I did. Those effects gradually lessened as my 'journey' progressed. It's frequently said here that any exercise you do should be measured and increased in density gradually but NEVER taking on more than your body is comfortable with. Everyone is different and you have to listen to your own body.Walking is good! Remember to walk from the hip not the knee so that you're using all the muscles in each stride.

My mother-in-law used an item similar to MrsNails' recommendation and she walked for an hour on most days well into her nineties ( MiL - not MrsNails 🙂).

[Kendrew in reply to 123-go]

When I was first diagnosed in 2019, I could barely manage a 10min walk around the meadow outside my front door. Two years on I can now walk for an hour (with 2 stops for a few mins to have a rest) which I consider a small triumph. Gradually, I've built it up and patience has paid off. I also do yoga for osteoporosis most afternoons. Helps to strengthen muscles and bones. If I don't feel up to it then I don't do it. Your body will let you know what it can or can't manage on any given day.....if you listen to it!!

[PMRpro Ambassador]

Concrete jeans, walking in mud/treacle/choose your dense medium.

And any sort of exercise you can do and enjoy is good - but start with small amounts and build up slowly. Very slowly ...

[humlies]

Yes I had the same feeling; I was diagnosed in July 2020. I do walk most days and find I have improved since the early days; I no longer walk with a stick. I have a rebounder (mini trampoline) on which I spend about 5 minutes day - this might have helped, but it is fun anyway!

[Daffodilia]

We called it Tin Man legs - got better as reduced pred and PMR eased

[AliDeJ]

Walking through treacle. I believe this is a sign I'm not on enough Pred. It heralds a flare for me. Can't get out of the car easily and my muscles aren't getting enough oxygen as I walk. We're you ok on higher doses?

[Hidden in reply to AliDeJ]

I was on 15mg. I was in a lot of pain & as soon as I took prednisolone the pain went. I began at 15mg & am now on 6.5mg. The feeling in my legs have been with me ever since diagnosis.

[jarn]

Only felt like this BEFORE diagnosis; perhaps need higher dose Pred?

[colmarin]

I have also had this feeling of heavy legs since my diagnosis in March of 2018. Initially on 25mg of pred and now tapered down to 5mg. The heaviness and weakness in my legs always worsens with a reduction in dosage and then gradually stabilizes. The heaviness worsens the longer I walk....though I'm only doing 20 or 25 minute walks. Sometimes I wonder if I'll make it home so I can't venture too far away. Yes it feels like trying to walk through something thick like mud or sometimes I say I feel like I have lead flowing through my veins. Interestingly my bloodwork consistently shows I have a high platelet count and often wonder if this has an impact and if perhaps my blood vessels are not adequately delivering oxygen to my leg muscles???

[Blurry62]

Aargh! I am right there with you today. GCA diagnosed February 2018 and tapering to 6.5 right now. Stiff as a board and so tired. It's so tempting to pop more pred. Because I know I will get an energy boost. . Some days I feel strong enough to stride through the market, but out door on uneven rough ground is mush harder. I've ordered walking sticks to help my get along. ... My doctor says this heaviness is due to deconditioning of the muscles from long term prednisone. Its brutal, I know. We have to try to stay positive; do what we can-when we can do it, and have hope -this will all improve.

[Hidden in reply to Blurry62]

Thank you. That’s the first time I have been given an explanation for the leg problem. Whenever I have mentioned it to a rheumatologist & GPs it was just ignored. A GP on Monday did actually say that long term prednisolone can cause muscle wastage & I must try & exercise as much as possible.

[Blurry62 in reply to Hidden]

It's hard. I understand what you're feeling. Totally. I hope the walking sticks help. They have good reviews. Not exspensive. 24 dollars. They take some weight off the legs as you walk and work the upper body muscles as well. Google Nordic Walking. Its interesting. "Hug"

[PMRpro Ambassador in reply to Blurry62]

Except lots of people have it from the start of PMR and it isn't due to pred then. They do try to push everything on to pred!!!

[Blurry62 in reply to PMRpro]

As I don't have PMR, I can't speak to it all. Unfortunately, I have a long relationship with prednisone.

I may have stumbled onto what many here may call a no Bainer...I was so weary this afternoon that I laid down and slept for an hour and a half. I felt quite a bit better the rest of the evening. I'm going to try napping every afternoon to see if it consistently helps the stiffness, fatigue, and pain.

I wonder if I could have developed PMR at this stage of my GCA journey.

What do you believe? Thanks

[PMRpro Ambassador in reply to Blurry62]

It may not be a case of developing PMR at a stage of the journey - PMR can be a symptom of GCA but is often not noticed at early stages and then is masked by the relatively high doses, only appearing later on as you reduce.

Lots of people find a nap at the right time makes a tremendous difference.