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.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) group.

@aspine – PMR can sometimes be difficult to diagnose due to the number of conditions that can mimick PMR. The National Organization for Rare Disorders has the following information under related conditions. You might want to discuss it with your PCP.

"Polymyositis is a rare inflammatory disease characterized by degenerative changes in muscles and supporting connective tissue. Muscle weakness may occur rapidly and affect the neck, trunk, and upper arms and legs. Joint pain, swelling, and tenderness may be present. Eventually, it becomes difficult for affected individuals to rise from a sitting position. In some cases, individuals may have difficulty climbing stairs, lifting objects, and reaching overhead. The exact cause of polymyositis is unknown, although the interaction of inherited, viral, and environmental factors may play a role." — Polymyalgia Rheumatica: https://rarediseases.org/rare-diseases/polymyalgia-rheumatica/

Also, exercise does play a role in PMR and can help – "Both exercise and rest play important roles in PMR treatment. Regular exercise is essential for maintaining joint flexibility, muscle strength and function. Good forms of exercise include walking, riding a stationary bicycle and exercising in a pool. Rest is also necessary to give the body time to recover from exercise and other activity." — Polymyalgia Rheumatica: https://www.arthritis.org/diseases/polymyalgia-rheumatica

I don't think you are alone with leg strength. Even though my PMR is currently in remission I have similar concerns. It's difficult for me to get up from the ground although I am 78 🙂. I try to do leg strengthening exercises daily along with some upper body exercises.

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@johnbishop

@aspine – PMR can sometimes be difficult to diagnose due to the number of conditions that can mimick PMR. The National Organization for Rare Disorders has the following information under related conditions. You might want to discuss it with your PCP.

"Polymyositis is a rare inflammatory disease characterized by degenerative changes in muscles and supporting connective tissue. Muscle weakness may occur rapidly and affect the neck, trunk, and upper arms and legs. Joint pain, swelling, and tenderness may be present. Eventually, it becomes difficult for affected individuals to rise from a sitting position. In some cases, individuals may have difficulty climbing stairs, lifting objects, and reaching overhead. The exact cause of polymyositis is unknown, although the interaction of inherited, viral, and environmental factors may play a role." — Polymyalgia Rheumatica: https://rarediseases.org/rare-diseases/polymyalgia-rheumatica/

Also, exercise does play a role in PMR and can help – "Both exercise and rest play important roles in PMR treatment. Regular exercise is essential for maintaining joint flexibility, muscle strength and function. Good forms of exercise include walking, riding a stationary bicycle and exercising in a pool. Rest is also necessary to give the body time to recover from exercise and other activity." — Polymyalgia Rheumatica: https://www.arthritis.org/diseases/polymyalgia-rheumatica

I don't think you are alone with leg strength. Even though my PMR is currently in remission I have similar concerns. It's difficult for me to get up from the ground although I am 78 🙂. I try to do leg strengthening exercises daily along with some upper body exercises.

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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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@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?

Jump to this post

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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That has happened to me also, when I was first diagnosed with PMR. I was referred to physical therapy and that helped tremendously.

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weakness is something i always experience right before a flare..PCP should not be managing pmr without input from a rheumatologist

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Hello, @aspine if you were properly diagnosed with PMR and on the appropriate dosage of prednisone, your symptoms should have abated. My PMR symptoms were such that I could barely maneuver on a mat to do any stretching exercises. The pain and stiffness were too intense, from the groin to the ankles, and, in particular, the backs of my knees were incredibly stiff. No amount of stretching or walking helped that. I understand now that the immune system attacks the blood vessels – so getting blood flow to the area is impossible. I had to push my Primary Care Doctor to do the appropriate blood tests and when I told him I thought I had Giant Cell Arteritis, GCA, (a diagnosis suspected by a friend, a specialist), he scoffed. He changed his mind when my sed rate (ESR?) came in at 119 and referred me to a Rheumatologist immediately. You know about 30% of people with PMR develop GCA, which can be life-threatening, and you need to be monitored for that, maybe something to point out to your doctor. Any problems with vision, tender scalp, head and neck pains, dry cough, loss of appetite, anemia can be GCA, and a higher dosage of prednisone is needed. If untreated, stroke or blindness can result.

Finally, since you work in a library and need to kneel down, you can request a reasonable accommodation under the Americans with Disabilities Act. Maybe request a different task you can do and ask for someone else to do the kneeling. The Job Accommodation Network (JAN) is a great resource for exploring reasonable accommodations. Good luck!

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@tsc and @aspine. You are so right, @tsc. I was diagnosed in March, 2019, with the dreadful GCA and have experienced all the symptoms you related – loss of vision in one eye, two strokes, DVT in leg, heart attack, tender scalp, head pain, weakness, leg neuropathy, profuse sweating, blackouts, etc, some of which still persist. GCA is nothing to fool with, and needs a rheumatologist on your medical team!

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I too had leg weakness at least a year before the onset of the symptoms of PMR. I couldn’t understand how I could go on four mile walk and then have difficulty get up from the floor. This disease is a practice of getting the medical help you need, patience and doing your best at keeping a positive attitude, practicing gratitude. I’m 72.

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Actually that's how I started out before PMR was suspected as the cause. I had difficulty lifting my legs to even get in a car. I have not taken predosone for personal reasons, but after a few months of aquatic therapy the leg weakness improved and is no longer the problem it was. I think the important thing is to keep moving inspite of how you feel. Exercise those muscles is key.

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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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@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?

Jump to this post

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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@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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