High sed rate, diagnosis of PMR, bilateral pain in arms, shoulders but not the "characteristic" stiffness in the morning.

[darkred]

Wondering if others with PMR lack this diagnostic criteria, whereby one wakes up with painful stiffness, which then gradually lessens after an hour or more. The signs of PMR were otherwise very strong -- but lacking this characteristic. How common is this?

[SheffieldJane]

I think we all express this disease differently to some extent. I don’t experience painful stiffness in the morning but it increases in the evening and it’s hard to get out of a chair at bedtime. I am much better keeping active during the day. I experience stiffness when I first go out and move badly, this improves as I get going. I am much better after an active day, as long as I don’t over do it. It is a blessing to feel comfortable on my bed.

[darkred in reply to SheffieldJane]

My first bout with PMR involved my lower body. Pain getting out of a chair, yes! Pain turning over in bed (involving my pelvic girdle/lower body), yes! I was caring for grandchildren and kept going. Like you, an active day was better. I received an accurate diagnosis of PMR and that was good. Luckily, I connected with a rheumy and got the effective treatment. Success after one year! I have empathy for those on this forum who maybe did not get an accurate diagnosis which delayed successful treatment. I am now on my second bout of PMR, which involves my upper body and not my hips/lower body. My first bout was 2010-2011. My second bout started in April 2023 and I am now being treated after requesting my primary care physician do a sed rate. It was 63. An interesting aside: My sed rate was not abnormal in 2010! !! Conclusion: Everyone is different and every episode can be different in how it presents.

About early morning stiffness: Not true in my case. Pain was the same throughout the day, not worse in the morning, both in 2010 and in 2023. Thank you for your reply!

[PMRpro Ambassador]

I was stiff - but not really painful. Too many doctors labour under the delusion that all PMR patients demonstrate all the listed PMR signs and symptoms. Same with GCA. They don't.

[piglette]

I never had stiffness. The rheumatologust in diagnosis said “you have stiffness in the morning don’t you?” He then said “of course you do”. I just wanted to say “no”. I was in pain all the time. With pred there is less pain but no particular stiffness in the morning.

[Mayadill in reply to piglette]

And me. My hips weren't stiff, just useless. My legs and shoulders weren't stiff, just agonising.

[Bcol]

I think stiffness and some achy pain came into at the beginning, but that then morphed into agony and complete immobility in every joint. Pretty much carried into hospital. Pred removed the pain completely and full mobility returned gradually over a few weeks. CRP 131.4 and ESR 54.

[Merryfield]

Never have had am stiffness due to PMR. 128 sed rate, painful and weak right shoulder, frozen and weak right hip so bad could not raise leg. Pred made it all go away.

[agingfeminist]

Once the PMR had really got hold of me (it took a couple of months of pain and stiffness in neck, shoulders and then legs) I was virtually paralysed for the first hour in the morning. I could not get out of bed,,, then my PMR was diagnosed and my first 20mg of pred transformed my life...until GCA popped up a few weeks later.

Perhaps PMR is an umbrella term for a host of related diseases that respond to pred...but actually present somewhat differently (except the pain and/or stiffness are bilateral and located in muscles)

[PMRpro Ambassador in reply to agingfeminist]

"Perhaps PMR is an umbrella term for a host of related diseases that respond to pred...but actually present somewhat differently (except the pain and/or stiffness are bilateral and located in muscles)"

Not necessarily different diseases, though of course they could be, but definitely different versions - and a few of the really good thinking rheumies are of that opinion too.

[agingfeminist in reply to PMRpro]

sorry that's what I meant by related diseases...it is interesting that there are things in common but such a range of symptoms experienced

[PMRpro Ambassador in reply to agingfeminist]

I suspect it comes down to where you are on the spectrum of GCA/LVV/PMR - and it is obvious from the results of the clinical trials of tocilizumab that there are at least 2 versions of GCA since only half of patients respond entirely and get off pred showing they have inflammation caused only by IL-6, while the rest have other causes of the inflammation not caused by IL-6 which don't respond to TCZ. And that is probably exactly the same for the rest.

[agingfeminist in reply to PMRpro]

perhaps not a continuous spectrum but a sort of quantised version - with each version having very distinct immunological features (as you suggest for GCA)

[WaltzG]

Started with classic pain and stiffness in legs and cldnt get out of bed and inability to raise arms. Nevertheless was told vaccine side affect by Dr!!

[Exflex]

for me it was bilateral throbbing pain in the arms, a pain no amount of pain relief could touch. It was sudden onset and in the middle of night every night thereafter until diagnosis and Pred. My GP checked for stiffness but I had none. First he tried me on a muscle relaxant tablet for 4 days that had no effect, then Pred for 5 days which had an almost immediate effect, ie within 4 or 5 hours. So in response directly, PMR presents in different ways, but the common denominator is that paracetamol / Ibuprofen doesn’t touch, only steroids work.

[Darkchocolate1]

I never had stiffness with PMR just lots of debilitating pain. My rheumatologist asks me if I am stiff in the morning and each time I say no he looks at me like I am not telling him the truth. Two and a half years in still no stiffness. Each of us is somewhat different. I have been having pain between my shoulder blades for a while and just learned 3 cervical spine disks are bulging and pressing on the nerves. It is a burning type of pain. It is good to know what is or is not PMR pain so we can treat appropriately.

[sidra1968]

Mine wasn't really like that..my neck got worse as the day went on. Seems it's different for everyone.

[Viveka]

No stiffness - bilateral stinging , soreness and aches at the front of the shoulders. Could extend arms normally but repetitive movement very painful.