pmr and leg pain

[BabyRuby1]

Been diagnosed with pmr 2 years ago, now on 3 mg. I see my rheumy tomorrow which I dread because he doesn’t think my leg pain is caused by pmr. Some days my legs feel like someone hit them with a baseball bat! The sides and front of my thighs and back of my thighs, back of knees, sides and back of lower legs. Both Sides of my butt and right shoulder. My Rheumatologist says only upper front thighs are effected by pmr but I have pain sometimes all over my legs. Knees not effected just seems pain in muscles in legs

What do you wonderful helpful people think of my dilemma ? 😩😩😩

[123-go]

If your rheumy doesn’t think your leg pains (which sound pretty awful) are PMR related what does he think is causing them and what is he going to do for you?These are questions that need answering. Try not to feel intimidated by him: it’s his job to investigate your symptoms.

Pre-diagnosis the length of both my legs were affected-thighs, knees (swollen to double normal size) and feet where I could barely fit into trainers with laces pulled apart. Once on Prednisolone the swelling/inflammation subsided dramatically.

Do read this:

academic.oup.com/rheumatolo...

[DorsetLady PMRGCAuk volunteer]

Show him this picture - from this article-

academic.oup.com/rheumatolo...

Areas affected

[PMR_sufferer1]

So i too get cramps in.my.legs from time to time. ALSO when i got PMR the pain in my groins ead terrible.To be honest tje doctors are clueless on regard to PMR in my opinion.

Trust me you have PMR !

[Mayadill]

Where do they get it from, in which medical textbook - my SHINS, my shins at diagnosis caused me probably the most terrible pain I have ever experienced in my life. No pain in my thighs.

[PMRpro Ambassador]

"My Rheumatologist says only upper front thighs are effected by pmr"

Rubbish - every patient is a bit different but it is well known that hamstrings can be involved in PMR and has been demonstrated in a study using PET-CT:

pubmed.ncbi.nlm.nih.gov/291...

Claire Owen is a leading researcher in the PMR field and her first finding about hamstrings was published in the BMJ in 2016 so hardly new.

And an oldie:

onlinelibrary.wiley.com/doi...

found some patients with calf pain as a presentling feature of what evoled to recognisable PM over time.

What is the calf pain like? Is it worse in relation to anything in particular - walking for example?

[BabyRuby1 in reply to PMRpro]

well today I saw my rheumatologist

Told him about pain in front of thighs front and back behind knee pain, calf pain He said these are not typical of PMR as I figured he would say…he’s not sure what my pain is from….said I could have blood flow problems in my legs, referred me back to my GP for some leg blood flow thrombosis tests! God help me….I told him about this group and some of the recommendations…he was not happy 😆😆😆😆he said “are these people specialists, doctors?” “Have they written books on PMR like I have”

Blah blah blah….I give up! Anyway he wants me to stay on 3 mg till June 1 then alternate half mg for a month, etc. he said the next time I have a flare, come in immediately so he can blood test me and look at my symptoms

My blood work ESR was 3.9 today…not bad for the pain I have 🤔🤔🤔🤔

[PMRpro Ambassador in reply to BabyRuby1]

I have actually! Who is it? What's his book? I have the Dejaco and Dasgupta compilation one and I know you aren't under Dejaco! And the links I gave you are from people like him so he needn't get stuffy - some medics think they have a monopoly on understanding medical texts.

[BabyRuby1 in reply to PMRpro]

🤣🤣🤣🤣. Yep he is one arrogant doc

[Flivoless]

Your Rheumy is wrong. When I first succumbed to PMR, two year ago, the pain started in shoulders then back of knees followed by hips. 15mg of Pred had no effect but 25mg controlled the pain within hours.

[BabyRuby1 in reply to Flivoless]

yep he is a little arrogant

[Flivoless in reply to BabyRuby1]

As indeed most of them seem to be, in just about every Country. 😡

[PMRpro Ambassador in reply to Flivoless]

My rheumy is not even a tiny bit arrogant, looks about 15 and is a world name in the field! Then there is Sarah Mackie - so dismissive of her gifts and she's forgotten more about PMR than most ever learn. There are goodies ...

[Broseley]

My pain and stiffness started in my knees, then my hips and back. Eventually it spread to my neck and jaw. Never any shoulder pain. I saw a rheumy at the Urgent Assessment Centre due to the headache I had developed as GP suspected GCA. Rheumy diagnosed GCA and PMR due to my high ESR and CRP (in the 80s). Pred had an immediate (within 6 hours) effect. So we're all different!

[BabyRuby1 in reply to Broseley]

he sure questioned me about jaw pain. Luckily I don’t have any so GCA is out

[PMRpro Ambassador in reply to BabyRuby1]

They have a fixation on each GCA symptom - they aren't compulsory! You don't HAVE to have jaw pain in GCA or headache - some people just don't ...

[BabyRuby1 in reply to PMRpro]

will you be my doctor ? 😁

[PMRpro Ambassador in reply to BabyRuby1]

I dismissed that idea 50 years ago - occasionally I regret going the science way but not often!!

[BabyRuby1 in reply to PMRpro]

thank you for your time and helping all of us with your knowledge 😁