Symptoms of PMR

[Aries789]

I’m still in denial . GP just took raised plasma levels as meaning PMR. I don’t have any pain in neck, shoulders & arms , just achey hips , painful knees & feet & thigh muscles . Everything I’ve read on line says PMR never effects knees & feet ? Surely raised plasma can indicate something else other than PMR ? Happy to hear your thoughts , thank you 😊

[PMRpro Ambassador]

Then you haven't read here! I had sore hands and feet - tendinitis. And I had knee pain that one rheumy claimed was OA, she could feel it. 13 years later there was still no sign of OA in that knee when imaging was done. The foot and knee pain went with pred, took a few months but it went. RS3PE syndrome affects feet and hands and is not uncommon alongside PMR - google it. Although PMR mostly affects shoulder AND hip girdles, it may only be shoulders OR hips.

However - you are absolutely correct, raised ESR doesn't just happen with PMR. All the raised ESR and CRP mean is that there is inflammation present somewhere and it may be due vasculitis, arthritis, an infection or even injury/post-op trauma. CRP will shoot up to amazing levels with a chest infection too.

Have you any other symptoms that are typical of PMR? Or some that aren't?

[Aries789 in reply to PMRpro]

The knee pain started years ago , as did feet , both severely affect my life , had xrays no OA, have one permanently swollen toe now , the pain is in the tops of my feet. Thigh muscle pain started about 3 months ago . Hips have been aching for years , they only really hurt at night in bed , I’m a side sleeper. I suffered severe SPD when I was pregnant , totally hormone related , went immediately after birth. I’m thinking more along lines of hormones again due to the good old menopause? I struggle with stairs , getting up from sitting down , I can’t crouch or kneel, walk very far , struggle getting out of car . I’m so confused 🤷‍♀️

[SnazzyD in reply to Aries789]

Whilst menopause can cause people to feel a bit generally achey painy in a fluey kind of way, it doesn’t cripple people in certain areas. If that was the case, half of womankind would be incapacitated I expect. People I’ve seen desperate for HRT were not asking for it because they were becoming disabled, it was more for a generalised malaise and mental health.

Presumably you sleep with support between the knees to help the hips? Night pain can also occur because there is a peak in inflammatory substances in the early hours and with an inflammatory condition there are spades of it in the system.

As PMRPro suggests look up RS3PE to see if it rings true for you.

[PMRpro Ambassador in reply to Aries789]

There is one form that is due to hormone imbalances - and I believe that can be checked for by fairly simple blood tests. Have you discussed it with your doctor? Though somehow, I'm not sure that would have raised inflamamtory markers. The person I came across with that had it identified by the practice nurse when she struggled to get up onto the couch for a smear test. The nurse recommended which GP to see - the one who knew about it rather then others who'd just have said "your age"! She was put on hormones and bingo - stiffness gone!

[SnazzyD]

Well, I understand your search for another diagnosis but people do report issues with their feet and knees, so you may have triggered a tsunami of replies there. Baton down the hatches. However, even if they are not due to PMR you’ve almost got the PMR full house in the painful hips and thighs anyway.

[123-go]

My PMR started with pain in upper arms and shoulders and gradually moved down my body affecting hands (I used to wake with my fingers curled and so stiff and painful that I had to uncurl them one by one and try to flex them to enable some movement). Buttocks felt like I was sitting on rocks, painful thighs, swollen knees and feet. Two days after starting Prednisolone I felt I'd been re-born.

[DogAgilityObsessed]

All my pain initially concentrated around hips and upper legs. Looking back I’m fairly certain it started at least a year before diagnosis although it took 6 months before I first visited the GP who started a battery of tests ruling out causes. Then during lockdown my arms started aching and I couldn’t lift them.

[OzLon in reply to DogAgilityObsessed]

Interesting to read your experience. I haven’t got arm/shoulder pain as yet - just this weird itchiness on my upper back for the past 2-3 months - but I would say that the pain in my thighs started about 6 months ago (around the time my mum died) and has got worse as my stress levels have increased (unremitting work stress + caring for my elderly dad in lockdown - he has prostate cancer - plus I’m away from my home, my job, my life and haven’t seen my partner since February as he lives overseas).

I finally got to speak to my GP today, but she wanted to rule out PMR because she said it always appears in the shoulders and I only have pain in my thighs/lower back/hips. I eventually persuaded her that we should do a blood test to properly rule it in or out. Now comes the problem of trying to sign up as a temporary patient with my father’s GP...

[PMRpro Ambassador in reply to OzLon]

It does NOT always appear in shoulders - that may be where patients notice and complain about it. But the criteria say either/or/both hip and shoulder girdles.

[Alisonmartha]

I have shoulder pain, lower back pain, hip, thigh and knee pain. Also have had pain in the elbows, arms and feet. I noticed that conditions such as TMD, frozen shoulder and tennis elbow can be related to PMR. I have had all 3. However , the most hideous thing for me is not the pain so much, it’s the complete exhaustion and fatigue.

I haven’t lost weight though! 🤔😂

[PMRpro Ambassador in reply to Alisonmartha]

No, me neither!!!!! That would have been a minor compensation ...

[tangocharlie]

PMR can be a whole body experience, for me it was shoulders, neck and legs nitially but I've had a twinge in just about every other part of my body at some stage which I'm sure is relaed. My feet an legs still swell up big time if I don't take enough steroids. If your GP suspects PMR s/he will probably try you on a short course of steroids ie Prednislone to see how you respond and that forms part of the diagnosis. Of course lots of things respond to steroids, but it's a case of if it looks like a duck and quacks like a duck it probably is a duck