1. < Polymyalgia Rheumatica (PMR)
Profile picture for tomek456

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 csimmonds
csimmonds | @csimmonds | Nov 30 9:54am

Let me know if it helps you too. I hang a long band over a hook that hangs on the back of a door. Pull down on that. Then I wrap it around a bed post that is shoulder height and pull straight back. I need to find a way to pull in a downward movement. For the amount of effort I find it very effective.

REPLY
Profile picture for juliemcgee62
juliemcgee62 | @juliemcgee62 | Nov 30 10:22am
In reply to @joanmm "@tomek456 Hi, Normally golf, walk the dog, do yoga, dance in a show choir and jump..." + (show)
Profile picture for joanmm @joanmm

@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

Jump to this post

@joanmm Covid woke up my PMR
I take methatrexate because pred has bad side effects for me
I have no pain.

REPLY
Profile picture for mun68
mun68 | @mun68 | Nov 30 10:52am

yes!!! that’s how my PMR symptoms started… i had a cortisone shot in my spine and also put on cymbalta( which i just started to taper off of). i think the inflammation of PMR effects all the nerves in the spinal area from my own experience this past year and a half. i was great when i started 20mg of prednisone but as i tapered off of it, even with monthly infusion of actemra. i have pain and stiffness in my right leg

REPLY
Profile picture for geg
geg | @geg | Dec 1 8:31am
In reply to @joanmm "@tomek456 Hi, Normally golf, walk the dog, do yoga, dance in a show choir and jump..." + (show)
Profile picture for joanmm @joanmm

@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

Jump to this post

@joanmmive I’ve had PMR for over 2 years and been on prednisone which helps immensely until I get to 2 mg. This is my second taper to 2, in fact I was down to 1 mg q 2 days but the pain returned slowly everyday a bit worse. Yes, exercise is most beneficial, if you can get out of bed, or from a sit/stand position without assistance which is the case gor many inflicted with PMR initially. If 15 mg is working for you …. Rejoice!!! I suspect the rheumatologist might suggest a slow taper. Good luck!

REPLY
Profile picture for savitchcrew
savitchcrew | @savitchcrew | 6 days ago

That is exactly how my pain was at the worst. When I started getting pain relief it resolved. 2 yrs PMR on prednisone( down to 3 mg) MTX (15mg weekly) and Humira (for seronegative RA.)

REPLY
Profile picture for jabrown0407
jabrown0407 | @jabrown0407 | 6 days ago

I have decided to speak up about my leg pain. I had leg pain in my buttocks and thighs. The thigh pain was a searing pain and the buttock pain was more like a muscle pain. I went online to see what I could find and decided I had trochanter bursitis. I then went to my knee ortho to confirm my self-diagnosis and he confirmed it. We treated it with some steroid injections until I went to a Sports Medicine doctor who has treated it with wet needling. The treatments resolve the buttocks pain and some of the thigh pain, but not all. The searing thigh pain is resolved with prednisone (oral and/or injections) when it gets bad enough to require bigger guns than the needling.

Recently the Sports Medicine doctor has offered some private pay options that might have longer term higher quality help. No decision yet. Trochanter bursitis is now a chronic problem that is a result of my PMR.

REPLY
3 replies
Profile picture for aisp3b
aisp3b | @aisp3b | 6 days ago
In reply to @jabrown0407 "I have decided to speak up about my leg pain. I had leg pain in my..." + (show)
Profile picture for jabrown0407 @jabrown0407

I have decided to speak up about my leg pain. I had leg pain in my buttocks and thighs. The thigh pain was a searing pain and the buttock pain was more like a muscle pain. I went online to see what I could find and decided I had trochanter bursitis. I then went to my knee ortho to confirm my self-diagnosis and he confirmed it. We treated it with some steroid injections until I went to a Sports Medicine doctor who has treated it with wet needling. The treatments resolve the buttocks pain and some of the thigh pain, but not all. The searing thigh pain is resolved with prednisone (oral and/or injections) when it gets bad enough to require bigger guns than the needling.

Recently the Sports Medicine doctor has offered some private pay options that might have longer term higher quality help. No decision yet. Trochanter bursitis is now a chronic problem that is a result of my PMR.

Jump to this post

@jabrown0407 Years before PMR I used to get that kind of muscle pain in my buttocks. I even bought a special cushion for my chair at work. I also had continuing back pain and later on, I had a laminectomy. The buttocks pain went away after recovering from my laminectomy. However, I am now on a low dose of methylprednisolone (2mg/day) and I can feel slight pain in my buttocks along with the bilateral PMR pain in shoulders.

REPLY
Profile picture for tomek456
tomek456 | @tomek456 | 5 days ago
In reply to @jabrown0407 "I have decided to speak up about my leg pain. I had leg pain in my..." + (show)
Profile picture for jabrown0407 @jabrown0407

I have decided to speak up about my leg pain. I had leg pain in my buttocks and thighs. The thigh pain was a searing pain and the buttock pain was more like a muscle pain. I went online to see what I could find and decided I had trochanter bursitis. I then went to my knee ortho to confirm my self-diagnosis and he confirmed it. We treated it with some steroid injections until I went to a Sports Medicine doctor who has treated it with wet needling. The treatments resolve the buttocks pain and some of the thigh pain, but not all. The searing thigh pain is resolved with prednisone (oral and/or injections) when it gets bad enough to require bigger guns than the needling.

Recently the Sports Medicine doctor has offered some private pay options that might have longer term higher quality help. No decision yet. Trochanter bursitis is now a chronic problem that is a result of my PMR.

Jump to this post

Thank you for your input and info.
Tom

REPLY
Profile picture for sjc123
sjc123 | @sjc123 | 5 days ago
In reply to @jabrown0407 "I have decided to speak up about my leg pain. I had leg pain in my..." + (show)
Profile picture for jabrown0407 @jabrown0407

I have decided to speak up about my leg pain. I had leg pain in my buttocks and thighs. The thigh pain was a searing pain and the buttock pain was more like a muscle pain. I went online to see what I could find and decided I had trochanter bursitis. I then went to my knee ortho to confirm my self-diagnosis and he confirmed it. We treated it with some steroid injections until I went to a Sports Medicine doctor who has treated it with wet needling. The treatments resolve the buttocks pain and some of the thigh pain, but not all. The searing thigh pain is resolved with prednisone (oral and/or injections) when it gets bad enough to require bigger guns than the needling.

Recently the Sports Medicine doctor has offered some private pay options that might have longer term higher quality help. No decision yet. Trochanter bursitis is now a chronic problem that is a result of my PMR.

Jump to this post

@jabrown0407
Curious what do you mean by searing pain in thighs. Is it just in the front (quads), or just upon rising from a chair, or all of the time? Did your Sports Med doc tell you this condition could be “a result of “ your PMR?

REPLY
1 reply
Profile picture for jabrown0407
jabrown0407 | @jabrown0407 | 5 days ago
In reply to @sjc123 "@jabrown0407 Curious what do you mean by searing pain in thighs. Is it just in the..." + (show)
Profile picture for sjc123 @sjc123

@jabrown0407
Curious what do you mean by searing pain in thighs. Is it just in the front (quads), or just upon rising from a chair, or all of the time? Did your Sports Med doc tell you this condition could be “a result of “ your PMR?

Jump to this post

@sjc123 The thigh pain is all the way around my thigh. No portion of my thighs were excluded. The pain is constant, totally unrelenting. Searing pain feels like there is heat being generated internally as the source of the pain. Yet placing your hand on the skin there is no warmth. Not only did the Sports Medicine doctor confirm that PMR could be the cause, my PCP did as well as my Rheumy and Dr Google. However, I have recently been diagnosed with vasculitis, which has a lot of overlap pain wise and inflammation wise with PMR. Parsing what belongs in which bucket is impossible.

REPLY
View MoreView Less
Please sign in or register to post a reply.