Pain in legs with PMR

Posted by tomek456 @tomek456, Oct 1 2:13pm

Has anyone experienced severe buttocks pain and running all the way down into your shins and calves? My Rheumatologist says that is more likely a back nerve compression issue when it gets below the knees. But my spine doctor doesn't think that is the issue even though my MRI shows moderate spinal stenosis and a herniated disk. To my amazement, when I mentioned PMR, he asked what is that! It takes months to see a doctor and when you do they tell you go see another doctor! Meanwhile I'm in a lot of pain and the poison, prednisone.

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

Profile picture for ropnrose @ropnrose

@kathleendw I've been taking simvastatin for decades. Never had any aches or pains until PMR/GCA in July 2024. They're doesn't seem to be any rhyme or reason to this disease.

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@ropnrose how do you know it’s from the statin and not PMR? Can they mimic each other? Maybe taking a statin with PMR makes the pain worse? I have PMR and also take Simvastatin. My Doc says there’s no connection, but I’m not so sure.

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Profile picture for aflik @aflik

@ropnrose how do you know it’s from the statin and not PMR? Can they mimic each other? Maybe taking a statin with PMR makes the pain worse? I have PMR and also take Simvastatin. My Doc says there’s no connection, but I’m not so sure.

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@aflik I don't have answers to your questions. I have not had a discussion with my doc regarding the statin and PMR. Since Prednisone and Actemra can increase cholesterol, I never considered eliminating it. I'm happy that I am relatively pain free. I have some minor hip and knee pain, but I'm 69 yo. I've finally been able to increase my activity level this summer.

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There is a previous post related to Vitamin D deficiency. After checking vitamin D level, I additional vitamin D and the leg pain reduced to almost nothing. Try an internet search for NIH PMC12430293. There is a PubMed Central article on the study, "Vitamin D Status and Response to Supplementation as Predictive Factors for Early Remission in Polymyalgia Rheumatica".

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On leg pain: one of my first symptoms was pain in the quadriceps, along with unnatural hip movement. (Other muscles and joints followed, and thankfully I seem to be tapering prednisone successfully for the moment.) And on the association with other drugs, I cannot tolerate omeprazole: extreme pain in the thighs.

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I've had pain from hips to my knees (mostly hamstrings) but I always see shoulder and hip qhen i searched symptoms. Not much mention about legs. I have no spinal issues, and this all started at the same time, so I'm certain its the PMR

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You could be right, especially if its your thigh area and your hips. Standing up or sitting down is very difficult. Just finished an episode of that type of pain, and its PMR, blood test confirmed . You could have shoulder and neck pain, or pain in the hip and thigh area.
Good luck, just stay hopeful that some doctor somewhere will find a cure.

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My initial pain was in the back of my thighs when going upstairs. I also had morning pain in my shoulders. Then I was diagnosed with PMR and the symptoms were in line with other people with PMR. I have been on prednisone since March and have tapered to 3mg. It works most of the time but as I increased my exercising I feel some discomfort. I don't want to increase prednisone. My shoulders are stiff and sore in the morning but using resistance bands to stretch them out is a big help. I do other exercising later in the day but the bands really help and there is no pain using them. They just feel good.

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Profile picture for subway @subway

You could be right, especially if its your thigh area and your hips. Standing up or sitting down is very difficult. Just finished an episode of that type of pain, and its PMR, blood test confirmed . You could have shoulder and neck pain, or pain in the hip and thigh area.
Good luck, just stay hopeful that some doctor somewhere will find a cure.

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@subway ,

Thanks so much for your comments. I'm down to 4mg now but it wasn't easy. Can't wait to get to 3mg. While I still have the PMR I can already see better results on my body since getting under 5mg. I wish you the best in getting over this dreadful decease quickly.

Tom

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Profile picture for tomek456 @tomek456

Thank you so much for all the replies. Seven months ago, I was hiking, camping, bike riding, working out, and now this disease has put a complete halt on all that. I've managed to taper down to 6mg prednisone, but the mornings are brutal; lots of pain and stiffness. My CRP and ESR levels are normal, so apparently, I'm one of those few that don't show elevated levels but still have PMR. When I first came down with the disease, before I started prednisone. I could barely walk in the mornings, and I was unable to raise my arms higher than stomach level because of the stiffness and pain. I also ended up in ER unable to barley move at all and in severe pian. Of course, they didn't know what was wrong with me. They did blood work and a CT scan. Everything was normal. So, they shot me up with Morpheme and 50mg of Prednisone and sent me home in a wheelchair. Next day I felt great but that only lasted a few days. Not sure what may have triggered the PMR in all of you but here is what happened to me. In Jan of 2025, this year, I was scheduled for surgery for enlarged prostate. Four weeks prior to that I came down with a respiratory illness that was going around. One week prior to surgery I recovered from that. Two weeks after the surgery I came down with the flu, probably caught in the hospital. Within one month of the surgery, I started hiking and riding again but started to notice pain in my pelvis area and thought it was from the surgery. Then in a few days I woke up in the morning with stiffness and pain in hips and shoulders. So, I'm guessing all of that may have contributed to triggering the PMR. I can't believe after all these years they still don't know what causes it. Anyway, I would love to hear from you all and others timeline on what transpired prior to getting PMR. I'm sorry that all of you are going through this and I wish you all better health now and, in the future. Note: I use ChatGPT, an AI app, and it has given me a plethora of information on PMR. I've learned more from that than I have my doctors.

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@tomek456 Hi,

Normally golf, walk the dog, do yoga, dance in a show choir and jump up from bed! Just diagnosed and wondering if I had a virus prior to the pain and stiffness starting. We were in Portugal on a bus tour and my husband developed a cold and cough. There were a few others with coughs, so not sure what virus as no one tested for Covid. I was fine, but when I got home, I noticed pain and stiffness in my anterior and posterior hip muscles and thought it was from the trip as I had to push and pull both suitcases. ( my husband was using a walker). However, the pain/stiffness continued and my CRP was 40. I wonder if I also had the virus with no symptoms and the PMR then started from that. My Family Physician in Calgary was able to contact a rheumatologist right away and he diagnosed PMR. Luckily, I will be seeing him in January. I am on 15 mg of Prednisone and note that my symptoms still fluctuate. Yesterday, I was great and today, not so much. LOL

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