In PMR is there pain or no pain when not moving?

[Ripley52]

I've been treated for PMR for several years now. Currently on 5 mg pred daily. Last time seeing my newish rheumy he diagnosed fibromyalgia in addition to PMR. Also, and here's my question, when I told him that I only have pain when I move, he said that if it was PMR (or only PMR) I would have pain even when motionless. Since this began 7 years ago, my experience has been that when I am completely motionless there is no pain. So, is that typical or no? I can't seem to find any medical articles which specify. Thank you all for sharing. I love this website.

[PMRpro Ambassador]

What utter rubbish - there is no black or white answer! Everyone is different. And if you are on enough pred to really manage the inflammation, you can be pain-free all the time. It depends on where the inflammation is - legs may not hurt until you start using them, climbing stairs for example. If the blood flow to the muscles is compromised, then the pain will only happen when you use the muscle enough to require more blood and oxygen supply. That is what claudication is - the pain caused by a lack of blood supply to the muscle concerned. By the time you get to resting pain in peripheral vascular disease, you are in trouble.

I really really wish I knew where some of their ideas come from ...

[Ripley52 in reply to PMRpro]

Hi PMRPro. Thank you for responding. I had to laugh when I read your first words, as that was my initial thought when he said it. I've probably seen 6 or 7 rheumies over the past years, and some of their "opinions" just amaze me. When this all began, and before taking any meds for it, I felt like I had broken glass under my skin in my neck, shoulders, upper arms, hips, thighs. Rolling over in bed at night was excruciatingly painful. Once pred was first prescribed it was like a miracle. I cried happy tears because of the relief from the pain. Lots of tests done to exclude other causes, and it seemed like PMR was a solid diagnosis. So, anyway, thank you again.....your response is much appreciated!! Wishing you all the best during the holidays. I know you have had a rough year.

[PMRpro Ambassador in reply to Ripley52]

I had that feeling in my feet and I suppose it would describe the skin feeling too. But they try to tell you PMR doesn't affect feet - yes it does, Leeds did a study. And I have had no evidence of it being anything other than PMR in the last 12 years. If you can give it a different name and cure it - I'll take it and run!

[Twopies in reply to PMRpro]

Interesting, I’ve never been pain free, not even on starting doses. When I saw a rheumie for an eval, he said, “oh, you’ve got a really bad case.” Whatever that meant. I’ve read that 70% of patients are pain free on pred—I thought that meant that 30% aren’t?

[DorsetLady PMRGCAuk volunteer in reply to Twopies]

Not sure you’ve read that correctly…we often quote the fact that somewhere it’s stated that people should feel at least 70% better on Pred…

[Constance13 in reply to Twopies]

I've never been pain free either. As the years have gone by I recognise most of the PMR pain, as against arthritis, but not always.

[PMRpro Ambassador in reply to Twopies]

After my years on the forums, I'd fight the idea that 70% are pain-free! But are you sure you haven't mistaken the "70% global improvement in symptoms after starting pred"?

[Sharitone in reply to PMRpro]

Maybe from the only other PMR patient they've ever had?

[PMRpro Ambassador in reply to Sharitone]

Or in their dreams

[Noosat in reply to PMRpro]

Great answer !!!!!!!!!!!!

[Elle914 in reply to PMRpro]

Hi PMRpro,Your post clarified the issue of claudication, when after a long day walking around fairly easily at work, I come home and stiffen up like the tin man. I know I should move around more in the evening but I’m too damn tired.

So I decided to use an exercise band, moving and stretching my knees and legs sitting on the couch. The pain and stiffness eased considerably, enough do I could walk up the stairs almost normally.

Well, I found a way to exercise on my bum. I actually love walking but not at night when it’s freezing outside. It’s a great use for band therapy. Thought I .would share.

[HeronNS]

Even after seven years since I was suffering with undiagnosed PMR, I distinctly remember that I only hurt when I moved. When I first moved after even a short period of inactivity it could be and usually was excruciating. After loosening up it would be better although there were a lot of things I couldn't do at all.

[Ripley52 in reply to HeronNS]

Hi Heron, YES! What you just described was exactly the same as my experience. And, yes, I also would do better after a bit of movement and loosening up, but still had many things that I could not do at all. I remember discussing with two different GPs and one rheumy what I was going through and getting these quizzical looks....like they didn't believe me. Ugh. good times. 😉

[HeronNS in reply to Ripley52]

Those are the medics who need to experience what we do. Problem is, I think, they aren't getting best information when in training so they are prejudiced (they literally pre-judge) against the lived experience of real life patients when we don't match the textbook description.

[Noosat in reply to HeronNS]

You said it right. I have pain/discomfit when I walk or exercise, but OK when sitting or lying down It could be due to bone loss or arthritis as sometimes I get slight relief from high dose of Tylenol. I try not to blame everything on PMR although recognizing it is at the root of most of my difficulties

[Ripley52 in reply to Noosat]

I've not heard of pain from bone loss. Is that something you have heard or read about?

[PMRpro Ambassador in reply to Ripley52]

The line is that osteoporosis is not painful unless you develop fractures - though I think compression can be enough to be painful. However - I've lost count of the number of patients I have heard say they have pain with OP. Of course, it could be they expect it to be painful ...

[Noosat in reply to PMRpro]

It is painful when it is bone grinding against bone

[PMRpro Ambassador in reply to Noosat]

You can say that again!!! Which is why getting a plaster cast on a broken limb to immobilise it is a good move!

[Noosat in reply to PMRpro]

I meant to say osteoarthritis. Have lost 3" in height over the years

[PMRpro Ambassador in reply to Noosat]

Hope that doesn't happen to me - I'm a short-arse anyway

[Noosat in reply to PMRpro]

I used to help short people reach the top shelf in the grocery store, hard to realize cannot do that any more. Do find some of my slacks are no longer a little short.

[Nextoneplease in reply to Noosat]

I’ve lost at least 3” - frankly I can’t bear to measure any more!

[HeronNS in reply to Ripley52]

This got me researching. As one would expect, osteoporosis comes with mineral deficiency, and this can cause bone pain. There are nerves around and through the bones, although not actually part of bone so presumably this is why we can feel pain which seems to originate from bones. I had a tibial plateau fracture a few years ago and I honestly can only remember pain from the associated soft tissue injury. The doctor treating me in the ER wanted to send me home with 50 oxytocin. I declared I wouldn't have those in my house. An hour later a different doctor prescribed 20 tablets of Tylenol 3. It took me, with help from hubby, a year to use those up for headaches. I probably didn't need any pain relief for the fracture, although I took it proactively at bedtime about three times to help with sleep. So it would seem a healthy bone doesn't have much pain sensation.

[Noosat in reply to Ripley52]

look up osteoporosis

[Joanbill13]

I’m pain free until I move. Very comfortable in bed!