1. < Polymyalgia Rheumatica (PMR)

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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scpartain | @scpartain | Nov 10, 2021
In reply to @aspine "Hi, John, Well, your information is good news/bad news, I guess. But at least it gives..." + (show)
@aspine

Hi, John,
Well, your information is good news/bad news, I guess. But at least it gives me a little more faith in my doctor. As for age, I also am 78. But for the past 13 years I"ve been working in our library, and it is necessary to get down to the ground often. Until now, that has never been an issue. This came on very suddenly. I only knew it was related to whatever it is I'm dealing with. I do wish my PCP would mention referring me to a rheumatologist. So far nothing. How do I approach that diplomatically?

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I was also frustrated because my PCP did not mention referral to a rheumatologist when I was having unbearable pain and stiffness with PMR. I solved the problem simply by making an appointment myself with a nearby rheumatologist and soon began a treatment program that brought immediate relief. I hope you are feeling better soon.

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Mentor
John, Volunteer Mentor | @johnbishop | Nov 10, 2021
In reply to @ncgal "I was diagnosed with PMR 20 months ago. I am presently on 4 mgs Prednisone. Yesterday..." + (show)
@ncgal

I was diagnosed with PMR 20 months ago. I am presently on 4 mgs Prednisone. Yesterday I was shopping in Walmart and did a lot of walking (I am 79). When it came time to get in my car my left leg behind my knee cramped so much I had to drag it in. Then last night I was woken up with my right leg cramping behind my knee. The pain was so bad that I was crying. I've had two children by the Lamaze method (no drugs) and this was as painful as that. Luckily I was able to message the leg until the pain eased up. I do have neuropathy in both legs due to chemo. This morning I have no problems with them, but I know that walking long distances bothers my knees and ankles, which swell because of arthritis.

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Hi @ncgal, I'm wondering if the leg cramps might also be due to dehydration from not drinking enough water?

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ncgal | @ncgal | Nov 10, 2021

You might be right, John. I know I don't drink as much as I should. I usually add a little cranberry juice or lemonade as I don't like plain water.

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mopo | @mopo | Nov 11, 2021
In reply to @ncgal "I was diagnosed with PMR 20 months ago. I am presently on 4 mgs Prednisone. Yesterday..." + (show)
@ncgal

I was diagnosed with PMR 20 months ago. I am presently on 4 mgs Prednisone. Yesterday I was shopping in Walmart and did a lot of walking (I am 79). When it came time to get in my car my left leg behind my knee cramped so much I had to drag it in. Then last night I was woken up with my right leg cramping behind my knee. The pain was so bad that I was crying. I've had two children by the Lamaze method (no drugs) and this was as painful as that. Luckily I was able to message the leg until the pain eased up. I do have neuropathy in both legs due to chemo. This morning I have no problems with them, but I know that walking long distances bothers my knees and ankles, which swell because of arthritis.

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Hello! I’m so sorry you are experiencing the leg cramping. I too have had times where one of my legs have cramped up or if I move my leg in a certain way it feels like it is close to going into a full cramp. This doesn’t happen often but when it does it’s very painful. I’ve had PMR for 3 months and never associated that with the cramping. I wish you well and that the cramping will subside. Take care!

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aspine | @aspine | Nov 20, 2021
In reply to @johnbishop "I had the opportunity to listen to and meet a great doctor with a patients heart..." + (show)
@johnbishop

I had the opportunity to listen to and meet a great doctor with a patients heart at Mayo a few years ago at a social media gathering. He has a website with lots of great information and some possible approaches that might come in handy when you meet with your doctor. Check out these pages...

Tools for the Visit: https://patientrevolution.org/visit-tools
Communication Barriers: https://patientrevolution.org/barriers

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Hi, John,
Just wanted to tell you that the link of Nov 6 for communicating with your doctor was very helpful to me. I watched it and got the tools I needed to ask my PCP for a referral to a Rheumatologist. Thank you very much. Now, I just hope I have asked for the right Rheumatologist!

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Nov 20, 2021
In reply to @aspine "Hi, John, Just wanted to tell you that the link of Nov 6 for communicating with..." + (show)
@aspine

Hi, John,
Just wanted to tell you that the link of Nov 6 for communicating with your doctor was very helpful to me. I watched it and got the tools I needed to ask my PCP for a referral to a Rheumatologist. Thank you very much. Now, I just hope I have asked for the right Rheumatologist!

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Hi @aspine, I'm happy to hear the Patient Revolution website information was helpful! Can you let me know how your appointment with the rheumatolagist goes?

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aspine | @aspine | Nov 20, 2021

Yes, I most certainly will. Especially since I'm not sure what I'm looking for in a good Rheumatologist. You might have some good insight on that, I would think!

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Nov 20, 2021
In reply to @aspine "Yes, I most certainly will. Especially since I'm not sure what I'm looking for in a..." + (show)
@aspine

Yes, I most certainly will. Especially since I'm not sure what I'm looking for in a good Rheumatologist. You might have some good insight on that, I would think!

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My personal criteria for picking a rheumatologist might not guarantee a good choice 🙂 For me, I want a doctor that is a good listener as well as a good communicator. I also would want to know how much experience they have. Here are some tips that may be more helpful in choosing one.

8 Tips for Choosing a Rheumatologist: https://www.healthgrades.com/right-care/rheumatoid-arthritis/8-tips-for-choosing-a-rheumatologist

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anniekirby | @anniekirby | Jan 6, 2022

Since my diagnosis in early 2020 I have always had weakness in my legs. During Prednisone but it eased when I was in remission for 6 months and now again while I am out of remission but not on Prednisone as the pain is tolerable. I have used a stick at times and had a fall. I go dog walking every day and this has helped. I also have a regular cramp in my left leg.
I don’t live in the US but in a small country with more limited medical services unless you can pay so don’t have access to the same resources. This type of forum is very helpful thank you.

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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Jan 6, 2022
In reply to @anniekirby "Since my diagnosis in early 2020 I have always had weakness in my legs. During Prednisone..." + (show)
@anniekirby

Since my diagnosis in early 2020 I have always had weakness in my legs. During Prednisone but it eased when I was in remission for 6 months and now again while I am out of remission but not on Prednisone as the pain is tolerable. I have used a stick at times and had a fall. I go dog walking every day and this has helped. I also have a regular cramp in my left leg.
I don’t live in the US but in a small country with more limited medical services unless you can pay so don’t have access to the same resources. This type of forum is very helpful thank you.

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Welcome @anniekirby, I'm happy to hear your PMR is in remission. Mine is also in remission and I try to do daily exercises to help build my leg strength as well as work on my balance. I do have some Nordic walking sticks to use if I go on a long walk but don't use them for everyday walking. They really help with my balance. Walking is really good too. Here are some exercises I found that might be helpful if you haven't already tried them.

Balance Exercises for Seniors: 11 Moves to Try - Healthline: https://www.healthline.com/health/exercise-fitness/balance-exercises-for-seniors

Do you do other exercises to help with your balance and leg strength?

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