Where have you experienced pain due to PMR?H

@kjoed53

It sounds like you have a good team of doctors. Often one doctor will diagnose PMR and that is the end of it. I understand that PMR is a "diagnosis of exclusion" however, I doubt everything else ever gets excluded. There would be too many medical conditions to exclude all of them. Many conditions mimic PMR or have symptoms that overlap with PMR

Patients get the impression everything else was excluded and prednisone is the "only option." We get told to take prednisone while we wait until PMR "burns itself out" which seems ridiculous to me. Prednisone doesn't cure many things and long term use tends to create additional problems. Prednisone is detrimental to many medical conditions if you have one in addition to PMR.

PMR was the start of many of my problems ...or was it prednisone? No way of knowing ... I guess.

I do know that I had another autoimmune condition before PMR was ever diagnosed. When I was diagnosed with PMR, my first question to my rheumatologist was, "What happened to my other autoimmune diagnosis?" as if my diagnosis was being changed. My rheumatologist was astute enough to say my other autoimmune diagnosis didn't go away. She said it was still there but "unfortunately now I had PMR too."

PMR doesn't exclude other medical problems. There is always the possibility that something else causes PMR symptoms or there is something else in addition to PMR. I think this may explain why everyone with PMR is different. There is an infinite combination of medical problems and things that can cause PMR-like pain.

I can't complain about any of my doctors. I have severe arthritis, spondylosis and stenosis of my cervical spine. My chiropractor stopped treating me because of it, so when I started having shoulder pain, that was the first place to look. Lucky for me that the head of the neurology practice thought outside his expertise and ordered blood work instead of the extensive surgery that would have been required to address all of my cervical spine issues. My rheumatologist caught the blood disorder because he wasn't just looking for PMR. Each of my doctors referred me to someone they knew so that I was able to see six doctors in the first 3 1/2 months this year.

@kjoed53

I never complain about any of my doctors. I appreciated every one of them even though they tend to give me bad news all the time. I'm very grateful for my rheumatologist's persistence for finding a way to get me off prednisone.

I haven't encountered any doctor that said they knew everything. Only one person on the internet claimed they were "entitled to know" everything about taking prednisone for PMR and tapering off prednisone. I was amazed the person couldn't taper off prednisone either and still had PMR since they knew everything.

There is always more that is unknown compared to what is known for any medical condition including PMR/GCA.

I have severe lumbar spinal stenosis and that causes me to have pain. A neurosurgeon says I need a multi-level lumbar fusion. I'm not sure what caused all the "degenerative changes" to my lumbar spine. I suspect spondylitis had something to do with it. Spondylitis can also cause structural degradation to the spine. If I had listened to the person who knew everything about PMR and prednisone, I would still be taking prednisone for PMR.

@dadcue
Know-it-alls on any forum or on the internet in general are dangerous. Many people suffering through their days are susceptible to crackpot theories and influencers pushing misinformation and incentivized products. I am so grateful for the multitude of nonjudgmental support and information that is shared here. There are parallels and divergence in all our stories. PMR truly treats each of us as individuals.

@remargulies
I was diagnosed with PMR in December,2025 .
In October, 2025 I started with right arm pain which kept interfered with my sleep. Then the ends of my fingers went permanently numb ( except my pinkie). I started getting stiff with problems turning over in bed, getting dressed. I could only sleep sitting up because of pain.A massage therapist and physiotherapist agreed that they could not improve my symptoms. Because there is a family history of PMR, my GP started me on 15 mg of prednisone and I felt better in 2 days.
The numbness in my finger tips remained but pain was gone. I then saw a neurologist who thought I could have carpal tunnel as well. I have been wearing splints on my hands at night now for 4 months. The numbness has improved to more of a tingle in my finger tips. I am down to 3 mg of prednisone now and noticing my fingers are not quite as good. But I have also been doing more lifting lately.My GP says hand pain is not typical of PMR. I have not seen a rheumatologist.

I have a ton of hand pain and it came at the same time as my PMR. Also feet pain, but not all of the hand symptoms.
Needle-like electric spark feelings in finger tips (especially right thumb which is mostly noticeable when typing on my phone. This does not happen in my toes.
Most painful is the feeling that the bones of my hands (palms) and feet (soles) feel like they are made of double edged razor knives. Gripping and walking can be very painful,
My doctor PCP (whom I prefer over my rheumatologist) said it was just another Prednisone side-effect, but he was only familiar with the numb/tingly/pins and needles.
I wish mine was that minor.
My rheumatologist is young (I’m probably her only PMR patient) was clueless to this and these Precnisone side-effects. She suggested the night splints but I’ve been hesitant to buy any because there are so many different ones to choose from and they are too pricy for my to do a trial-and-error study.
As I have tapered down Prednisone from 40mg/day to 1.5mg/day, my feet pain has disappeared and my hand pain is primarily just stiffness pain now, and the right thumb rubbing around the phone screen electro-tingle.
You’re not alone.
Good lwishes and let us know if anything helps.

PMR started 8 months ago with
hip/upper leg pain and shoulder/arm pain. It progressed to my body from my ankles through my butt to my neck until diagnosis of PMR 3 months later and. Prednisone. I was almost pain free (pain level 2) experiencing the energy of Prednisone at 20 mg per day. I dropped to 15mg for a month and then to 10 mg since 2 hours sleep is not enough. I now get 6 hours sleep and just started tapering Prednisone 1mg per month. Morning pain is the worse and is ramping up, especially on my left side - calfs,, hamstrings, glutes, hips, back, shoulders,neck with stiffness. Acetaminophen helps in AM some days. Level 6 pain. I can function better in late afternoon and evening.

@eltje It is frustrating when the doctors don't know or can't provide an explanation for this.
I've been dealing with numbness and sharp stabbing pains in my left foot. My GP ordered an ultrasound to check for blood flow issues in my legs. That was normal. He prescribed Gabapentin for me to try for the shooting pains. (it helps) But my rheumatologist said that the prednisone "typically" wouldn't cause the numbness. All I know is that the tingling started when I was first dealing with the PMR pain when I was first diagnosed in March. It gradually got worse after taking prednisone. I'm inclined to think that there is a lot we don't know about the effects of prednisone on the body.

Across the back of my neck and dhouldets

My worst pain was in my upper arms. I could not lift them without crying like a baby. Getting dressed was excruciating!