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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milld835 | @milld835 | Jan 20, 2022

In reply to @labby "Yes, I have weakness in my legs; in fact walking is difficult. My feet and toes..." + (show)

Aw. That's so difficult. My thighs up to my neck were affected, but not below the knees. I'm so grateful for that. My legs still do get tired though and dragging winter boots around doesn't help. 🙂 Take care...it will get better.

aspine | @aspine | Jan 20, 2022

In reply to @scpartain "I was also frustrated because my PCP did not mention referral to a rheumatologist when I..." + (show)

Thank you for your comment. Unfortunately, in the area where I live, doctors seem to be at a premium. PCP's are an endangered species. I kid you not!! And this is not a rural area - rather an area close to a state capitol. The Rheumatologist I wished to go to does not accept new patients without a referral from the PCP, and that seems to be the case for most specialists around here. I guess because they're just too busy. This is a problem that needs fixing!!

scpartain | @scpartain | Jan 20, 2022

In reply to @aspine "Thank you for your comment. Unfortunately, in the area where I live, doctors seem to be..." + (show)

I'm very sorry that your area has such a shortage of doctors. I think this is the case with many areas and it makes it so difficult and frustrating to get necessary treatment. I agree that it's something that needs fixing and hope you are able to find a qualified doctor to help you soon. Best wishes for a successful outcome.

paelwell | @paelwell | Aug 13, 2022

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.

John, Volunteer Mentor | @johnbishop | Aug 13, 2022

In reply to @paelwell "I was diagnoses in 2014 and have been unable to walk for any distance since OFTEN..." + (show)

Welcome @paelwell, I'm sorry to hear that you have been dealing with the symptoms since 2014. I'm assuming you were diagnosed with PMR in 2014, are you still dealing with the pain or taking prednisone daily?

sharonanng | @sharonanng | Aug 13, 2022

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

I recently met with my primary care physician and she encouraged me to continue to advocate for myself with doctors. I find it is best to be direct and honest with my doctors. I go to each doctor appointment with a written list of my questions and concerns. If I feel the need to see a specialist, I request one and rarely have any issue with a referral. Best of luck to you. By the way, I am also 78. Hmmm.

lizbethobrien | @lizbethobrien | Aug 14, 2022

In reply to @sharonanng "I recently met with my primary care physician and she encouraged me to continue to advocate..." + (show)

Has your primary doctor order blood work that would show specific autoimmune markers? My primary doctor was the one who ran all of my initial labs in June of this year and by the time I met with the rheumatologist she had the information she needed. Now she repeats certain labs every month. I guess I am a bit confused as to why your primary doctor is not making sure you get to the right type of doctor thru a referral etc. Are you going to Mayo?

lizbethobrien | @lizbethobrien | Aug 14, 2022

I am 60 and in good health. However on May 1st 2022 the symptoms appeared. Within several weeks PMR moved throughout my body. I was fatigued, loss of appetite and was becoming more debilitated. So yes the pain etc was all over until I started taking prednisone.

flymetothemoon | @flymetothemoon | Aug 14, 2022

I would suggest seeing a Rheumatologist for PMR with this condition. I do believe long term use of Prednisone effects our bones. I developed a stress fracture in my foot while on it just from walking a lot. Also, there could be other contributing factors. Osteoporosis, arthritis etc. A Rheumatologist is best one to handle.

John, Volunteer Mentor | @johnbishop | Aug 14, 2022

Hi @lizbethobrien, I would like to add my welcome to Connect along with @flymetothemoon, @sharonanng and others. Sorry to hear you joined club PMR. The good news is that there are a lot of us here for any questions you might have from a patient to patient perspective. My primary care doc is part of a local Mayo Family Clinic and like your doc ran the ESR and CRP tests before referring me to a Mayo rheumatologist for the diagnosis. I've had 2 occurrences of PMR, the first when I was 64 back in 2007. I was started on the magic bullet (20 mg prednisone) and within hours I was back to feeling good. I did struggle tapering off of prednisone the first time and it took 3 and half years to get off. One of the main things that helped was a great rheumatologist who had me keep a daily pain log along with the dosage of prednisone and also supported tapering very slowly. He told me not to taper when the pain was too high. For me, that was over a 2 on a scale of 1 to 10.

My second time around with PMR was 6 years after I went into remission. I was able to taper off in a year and half the second time around, mainly because I made some lifestyle changes - eating healthier, less sugar and more exercise.

Has your doctor or rheumatologist suggested any tapering schedule or other suggestions?