Is anyone else diagnosed with PMR experiencing weakness in their legs?

Posted by aspine @aspine, Nov 6, 2021

I have never noticed a problem with my legs prior to my diagnosis. Twice, I have kneeled down in public places - once in WAlmart - and was unable to get up. Scary!! This has never happened to me in the past. Is it the PMR, or is it prednisone, or is it that I have been misdiagnosed? My PCP is not suggesting a rheumatologist so far, and that alone concerns me.

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@paelwell

I was diagnoses in 2014 and have been unable to walk for any distance since OFTEN I feel as if I am climbing Everest. I have pretty much given up having a normal life and doing alll those things I used to love.

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I also had leg weakness, actually several years before my official onset with a diagnosis of PMR. I have normal labs, but my legs are weaker and coxifemoral joints hurt. Wishing you the best.

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@johnbishop

Welcome @lawhoeburg, That's a good suggestion about going to a fire station n a time of need, especially if there is one close by. Ours is a volunteer fire department and not normally open for business unless it's an emergency call out. They definitely are the best when it comes to helping folks.

Do you mind sharing what brought you to Connect? Were you searching for answer for PMR or other health question?

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I was diagnosed with PMR in April 2022 after 2 months of guessing what was wrong with me. I have classic symptoms of PMR and my doc knows of 9 other patients with PMR. I started on 15mg of prednisone and am tapering 1mg every month. So far so good. I am learning a lot about managing my tapering from this group. A big thanks to everyone that is sharing.

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@sue16833

I also had leg weakness, actually several years before my official onset with a diagnosis of PMR. I have normal labs, but my legs are weaker and coxifemoral joints hurt. Wishing you the best.

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@paelwell I had pain which I peeled one symptom at a time and one of them was hip pain which proved to be in my coxifemoral joints - bilateral. All of that pain was eliminated within in one week by simply learning to walk and keeping my feet and knees a hip's width apart at all times.

I refer to it as sit, stand, walk like a man. Sometimes it is known as SLAM - Sit Like a Man. As a lady brought up in the South this was a titanic shift in basic posture but the relief was immediate. I resisted steroids so I was stuck finding other solutions. Not an easy path but beats taking an extra 5 or 10 mg per day of prednisone for who knows how long to overcome that specific inflammation.

I did have some leg weakness that corrected at the same time.

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A good deal of the time, my legs feel as if I have just swum the Channel--heavy and sore and achy. I am unable to walk any distance.

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@paelwell

A good deal of the time, my legs feel as if I have just swum the Channel--heavy and sore and achy. I am unable to walk any distance.

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My PMR is in remission and I also have a heavy feeling in my legs and can't walk very far without resting. I do try to put in 30 to 45 minutes a day on my exercise bike to help with the leg strength. I also have to wear compression socks which I'm not really fond of but they do their job.

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@johnbishop

Welcome @lawhoeburg, That's a good suggestion about going to a fire station n a time of need, especially if there is one close by. Ours is a volunteer fire department and not normally open for business unless it's an emergency call out. They definitely are the best when it comes to helping folks.

Do you mind sharing what brought you to Connect? Were you searching for answer for PMR or other health question?

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PMR

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I have come to the conclusion that legs are very complicated and can not necessarily be used to follow PMR treatment. I was wondering if anyone else had their legs ultrasounded and had the results? I had mine and they are weird. Would be glad to compair.

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@suetex

I have come to the conclusion that legs are very complicated and can not necessarily be used to follow PMR treatment. I was wondering if anyone else had their legs ultrasounded and had the results? I had mine and they are weird. Would be glad to compair.

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Prior to my lymphedema diagnosis, the Mayo cardiovascular docs used ultrasound to check the blood flow in my legs and determined it was OK. Then they did a lymphascintigram which determined I had a lymphedema. Now I get to wear compression socks daily to help move the fluids upward out of the legs.

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I too wear compression socks although I don't have edema (other than what the pred causes). What they found with me is the sphaynous (sp?) vein, both high and lower, had closed off. No explanation that was obvious. I was wondering if other PMR folks had experienced something similar.

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@jabrown0407

@paelwell I had pain which I peeled one symptom at a time and one of them was hip pain which proved to be in my coxifemoral joints - bilateral. All of that pain was eliminated within in one week by simply learning to walk and keeping my feet and knees a hip's width apart at all times.

I refer to it as sit, stand, walk like a man. Sometimes it is known as SLAM - Sit Like a Man. As a lady brought up in the South this was a titanic shift in basic posture but the relief was immediate. I resisted steroids so I was stuck finding other solutions. Not an easy path but beats taking an extra 5 or 10 mg per day of prednisone for who knows how long to overcome that specific inflammation.

I did have some leg weakness that corrected at the same time.

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Thank you, very helpful!

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