Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

Looks like PMR might be the journey I’m on. I was an active 75 year old in the spring but about the first of June I noticed tingling in my legs and slight pain behind my right knee. By the middle of July the tingling, and now leg pain on both legs increased. A fall on my back, because right leg gave out, sure concerned me but I continued mild slow exercises to help back, maybe legs. By the end of July, pain moving over buttocks and up my back, difficulty sleeping because of pain behind knees and behind thighs, prompted appt to primary care doctor. He ordered blood tests, told me to take Aleve for pain and we would look at results the next week. By the following week pain increasing, difficult walking. I contacted my biological sister (I’m adopted) who said our mother had Lupus and Rheumatoid arthritis and could hardly walk. She died at 75 about 50 years ago. My tests showed normal SED number, blood in urine a concern, but nothing else too abnormal. I questioned the statin I’m on, doctor felt this wasn’t cause. A CD of back ordered, but results were kind of dismissed as cause. I asked for a Lyme disease test which was negative. I think my doctor is ready to pass me on to another source but did order an MRI (scheduled for today) a neurology appointment. EMG test of nerves and the questions remain. It was our daughter who suggested looking at PMR, never heard of it, happy to have found this site and any suggestions because it sure sounds like what is going on. I don’t want to undermine my doctor but I feel I have to advocate for myself. I know I’m not alone, many folks on difficult journeys, but this came on pretty fast so have lots of questions and few answers.

Hello @jlg75, Welcome to Connect. I'm not a doctor and have no medical training but I have had 2 occurrences of PMR and for both my pain was all over my body and not just in the legs and lower back. I had issues walking also. Had to use a wheelchair for my rheumatology appointment when I was first diagnosed with PMR. There are a lot of conditions that mimic PMR. Hopefully you will learn more after your MRI and neurology appointment. I think spinal nerve compression can also cause lower back pain along with some of the symptoms you describe. It's good to hear that you are advocating for your own health. We are our best advocate,.

Have you thought about seeing a rheumatologist who normally have a lot more experience with what ails us old folks?

Thank you for your quick response. I have researched rheumatologist in our area, reading their views, treatment approaches and beliefs about solving what’s going on. I don’t want to bring this up yet to my doctor but want him to help look for answers. He thinks neuropathy but it has been a bit of a struggle as that is what he only focus on. The pain is in my shoulders now too. I will request a C reactive protein test. Also learned this morning two neighbors also have PMR. We live on a lake so wonder…what’s in the water?

Hello all, new to PMR and finding this Connect site very helpful.

I'm a 63 yo male, diagnosed in late June of this year and feel lucky that I was diagnosed quickly, especially after seeing others suffer for years before proper diagnosis. I'm also a type 2 diabetic with mild hypertension.

In April I started having more stiffness in my hips/back than the typical morning stiffness, but not horrible and kept putting off seeing an ortho, thinking it was mild sciatica. In mid/late May, my hip flexors started getting sore and then my right knee started to get stiff/sore. I finally got an ortho appointment June 7th. By the time of my appointment, both hip flexors and knees were sore and stiff (4-5/10 pain scale) pain dropped a bit after early morning walk with the dog, but was constant and built throughout the day. The x-rays showed no damage, but blood tests showed elevated inflammation markers (CRP and ESR) but rheumatoid factor and ANA were negative. He thought it may still be Rheumatoid Arthritis, so he gave me a referral to see a Rheumatologist and a prescription for a 6-day pack of methylprednisolone. Within a few hours felt a lot better and the next day all the pain was gone. The day after finishing the course of meds, the pain started coming back and the following day was fully back. Well, as everyone has found out, it was two months out to see the rheumatologist and the pain started increasing and was in both hip joins and both knee joints. Both shoulders and wrists were also sore, but I attributed that to over exertion to compensate for lifting/pulling my self along because of the leg pain. It took a week to see my new PCP's Nurse Practitioner (NP) and by then, June 26th, the pain level was at a constant 5-6/10 and walking didn't help much anymore. A full panel of blood tests ruled out Lupus, Lyme's, gout, HIV, etc. The inflammation markers were up 3x and 5x from previous elevated tests. I was prescribed Meloxicam, but unfortunately the pain was getting worse, or so seemed because it was constant without any relief and lack of sleep. I could only work for 2-3 hours a day and then went home and laid flat with a pillow under my knees that let me doze for 15 minutes every couple of hours. The entire next July 4th week it was so bad I stayed home in misery. A couple of times I extremely painfully got into the car and sat for 5 minutes but was in so much pain I went back in and laid down. I called the NP on that Wednesday and she called in a 20mg dose of prednisone and we both agreed I most likely had PMR and not RA. Finally within a couple hours of starting, things improved and a few days later I felt fairly normal, except that by early evening the pain and stiffness started returning. After a follow up visit with my NP on July 26th, we thought it best to split the prednisone to 10 in the morning and 10 in the evening and that did the trick. I was feeling back to normal, except for being a bit exhausted and weak from the inactivity as well a losing 20 lbs in 5-6 weeks. Finally saw the rheumatologist about two weeks ago. She agreed that it is PMR. She seemed a bit surprised that I had bilateral pain in all joints (except ankle) at the same time. I also had not seen anyone describe that in any of the posts here or anywhere online. She did "scold" me for splitting my prednisone dose and insisted I only take in the morning as well as asking why I was on such a "high dose" at 20mg and the need to start tapering. Also started me on calcium/vit D supplements for bone loss since I will be on prednisone for awhile. Within three days of dropping to 17.5mg in the morning only, things came roaring back...... I immediately returned to 10mg morn and eve for two days and by the next day was back to pain free. I then went to 10mg morning and 7.5 evening and have only had very mild stiffness pain (1-2/10) in the shoulders the past ten days. At the two week mark, I will go to 7.5 morn/eve and see how that goes.

A few closing items:
- As I mentioned earlier, I feel lucky that this was diagnosed quickly
- Looking forward to tapering the prednisone, but will do it on my schedule, not as prescribed by my rheumatologist. Some great threads on tapering on this site! It is messing with my sleep and blood sugars, as well as having the typical jitters, flushing and very occasional heartbeat issues, but that is better than the pain, as long as I can taper down.
- Also, some good threads here on our providers not listening to us as individuals, but thinking everyone is the same.
- I've attached an article from a doctor who went through the same thing and really struck a cord with me.

Thanks, Terry

Hello all, new to PMR and finding this Connect site very helpful.

I'm a 63 yo male, diagnosed in late June of this year and feel lucky that I was diagnosed quickly, especially after seeing others suffer for years before proper diagnosis. I'm also a type 2 diabetic with mild hypertension.

In April I started having more stiffness in my hips/back than the typical morning stiffness, but not horrible and kept putting off seeing an ortho, thinking it was mild sciatica. In mid/late May, my hip flexors started getting sore and then my right knee started to get stiff/sore. I finally got an ortho appointment June 7th. By the time of my appointment, both hip flexors and knees were sore and stiff (4-5/10 pain scale) pain dropped a bit after early morning walk with the dog, but was constant and built throughout the day. The x-rays showed no damage, but blood tests showed elevated inflammation markers (CRP and ESR) but rheumatoid factor and ANA were negative. He thought it may still be Rheumatoid Arthritis, so he gave me a referral to see a Rheumatologist and a prescription for a 6-day pack of methylprednisolone. Within a few hours felt a lot better and the next day all the pain was gone. The day after finishing the course of meds, the pain started coming back and the following day was fully back. Well, as everyone has found out, it was two months out to see the rheumatologist and the pain started increasing and was in both hip joins and both knee joints. Both shoulders and wrists were also sore, but I attributed that to over exertion to compensate for lifting/pulling my self along because of the leg pain. It took a week to see my new PCP's Nurse Practitioner (NP) and by then, June 26th, the pain level was at a constant 5-6/10 and walking didn't help much anymore. A full panel of blood tests ruled out Lupus, Lyme's, gout, HIV, etc. The inflammation markers were up 3x and 5x from previous elevated tests. I was prescribed Meloxicam, but unfortunately the pain was getting worse, or so seemed because it was constant without any relief and lack of sleep. I could only work for 2-3 hours a day and then went home and laid flat with a pillow under my knees that let me doze for 15 minutes every couple of hours. The entire next July 4th week it was so bad I stayed home in misery. A couple of times I extremely painfully got into the car and sat for 5 minutes but was in so much pain I went back in and laid down. I called the NP on that Wednesday and she called in a 20mg dose of prednisone and we both agreed I most likely had PMR and not RA. Finally within a couple hours of starting, things improved and a few days later I felt fairly normal, except that by early evening the pain and stiffness started returning. After a follow up visit with my NP on July 26th, we thought it best to split the prednisone to 10 in the morning and 10 in the evening and that did the trick. I was feeling back to normal, except for being a bit exhausted and weak from the inactivity as well a losing 20 lbs in 5-6 weeks. Finally saw the rheumatologist about two weeks ago. She agreed that it is PMR. She seemed a bit surprised that I had bilateral pain in all joints (except ankle) at the same time. I also had not seen anyone describe that in any of the posts here or anywhere online. She did "scold" me for splitting my prednisone dose and insisted I only take in the morning as well as asking why I was on such a "high dose" at 20mg and the need to start tapering. Also started me on calcium/vit D supplements for bone loss since I will be on prednisone for awhile. Within three days of dropping to 17.5mg in the morning only, things came roaring back...... I immediately returned to 10mg morn and eve for two days and by the next day was back to pain free. I then went to 10mg morning and 7.5 evening and have only had very mild stiffness pain (1-2/10) in the shoulders the past ten days. At the two week mark, I will go to 7.5 morn/eve and see how that goes.

A few closing items:
- As I mentioned earlier, I feel lucky that this was diagnosed quickly
- Looking forward to tapering the prednisone, but will do it on my schedule, not as prescribed by my rheumatologist. Some great threads on tapering on this site! It is messing with my sleep and blood sugars, as well as having the typical jitters, flushing and very occasional heartbeat issues, but that is better than the pain, as long as I can taper down.
- Also, some good threads here on our providers not listening to us as individuals, but thinking everyone is the same.
- I've attached an article from a doctor who went through the same thing and really struck a cord with me.

Thanks, Terry