pelvic pain

[Buttonshutton]

Hi. Just wondering if pelvic pain can be a symptom of PMR.

The last couple of weeks I’ve noticed kind of a dull or pulling sensation as if I’ve been riding a bike. I haven’t. It isn’t there all the time. Comes and goes mainly happens when I first start to walk after sitting then goes off. It’s weird. But I don’t want to just assume everything is PMR. Never had this before with it and am in year four. Down to 4mg pred just wondered if anyone else had experienced pain there. I am going to go to the doctors as I’m winding myself up it’s something more serious. I have health anxiety which is horrible

[Creas]

Yes, I have a dull ache in my glutes. It was one of the later symptoms for me and the low dose pred I take doesn't keep it totally at bay. I either up my dose slightly when it is bad, or take a pain killer on top of the steroids. Naproxen (though I know I probably shouldn't). If I over do the gentle stretching, it gets much worse so I get really annoyed when people try to tell me I should be doing physio. I'm often told I can't have PMR as I'm too young (58!).

[Buttonshutton in reply to Creas]

Hi. Thank you for replying. I’m 54 I’ve been known to pop the odd naproxen too. This weird pain does go round the back sometimes too. I too have done the too young battle A PET scan stopped all that eventually. But then the rheumatologist sacked me cos I argued with her text book theories of reducing and waiting to introduce methotrexate. So annoying isn’t it.

[Creas in reply to Buttonshutton]

Just seen your bio and was interested that you say your markers are fairly normal. I have that too though I gather what the NHS call normal is not considered normal either abroad or in the private sector. The NHS seems to have a very very generous view of what normal is. I think that gives them the excuse not to do anything 'yes, you're normal, now go away'!

[Buttonshutton in reply to Creas]

Yes. Amd also wasn’t the typical shoulder pain at first. It was my hamstrings. They had no idea until a friend suggested bat it was and the GP said it wasn’t considered due to my age ! Since seen a different Gp at the same practice who seems much more clued up on it. He said my markers will probably never be totally normal despite not being that high. I thought that was interesting too

[Creas in reply to Buttonshutton]

I was once told that the elevation of my markers was so slight that it could be due to a mild allergy to cats or something.

[Buttonshutton in reply to Creas]

Wow. That’s the best I’ve heard yet ! Bet you didn’t know whether to laugh or cry !

[Creas in reply to Buttonshutton]

Yes! Thank heavens the prednisolone worked anyway though that didn't stop one NHS consultant trying to tell me I had fibromyalgia (which isn't inflammatory and doesn't respond to pred)!

[Buttonshutton in reply to Creas]

Wow! I had to write a letter to my GP at one stage as no one was listening to me I was so frustrated.

[PMRpro Ambassador in reply to Creas]

What did they run at? My ESR ran at 16-18 during a dreadful flare - perfectly normal many would claim. Except MY personal normal is low single figures. The range isn't for one person - it is the levels found in 95% of a large population of nominally healthy subject, 10K or so.

[Buttonshutton in reply to PMRpro]

They tell me the CRP levels which was 4.8 in June 2024. The highest it had been was 21 when diagnosed in July 2021. I didn’t know hamstrings was common and the doctors certainly didn’t. That’s interesting and as you say. If the information is out there. Why don’t they know !

[Creas in reply to PMRpro]

Just looking at the only results I can find, Feb 2024, shortly before I saw the good consultant who told me these weren't 'normal', CRP was 6.4 and ESR was 32.

I have to say, any average taken from the UK population is likely to be far from healthy given the public health these days - I imagine most people in the UK apart from health nuts and immigrants (who often seem to have much healthier diets) are inflamed. In Cyprus where people eat fresh meat and veg, not processed food so much, and don't drink much more than a glass of wine a day, the 'normal' is considered to be lower.

But it is interesting that one doesn't necessarily have to have a hugely raised CRP/ESR to have acute pain from PMR. I wish the medical profession would catch up with reality - doesn't anyone update them?

[PMRpro Ambassador in reply to Creas]

It is out there - plenty of literature with warnings that normal markers does not rule out PMR - or even GCA, Up to 1 in 5 have markers that are still "in normal range" though as I always say, that doesn't mean they aren't raised for them. But for some reason, some people just don't mount the acute response. If you told me those results I;d say there is SOMETHING going on, they are just out of range - but a miss is as good as a mile sometimes.

[Creas in reply to PMRpro]

Yes, I've scoured the net and read such reports but my GP seems to stick religiously to what is statistically usual. I think he totally disregarded my comments about the small % of people with PMR who do have fairly normal markers.

[PMRpro Ambassador in reply to Creas]

Then he's not a good doctor - we are not machines ...

[PMRpro Ambassador in reply to Buttonshutton]

Hamstrings are recorded as commonly being affected in PMR and over 50 is the age range - though that doesn't mean it doesn't happen younger. I know PMR is my specialist subject but if I as a MOP can find these things - why can't they with their access to medical databases?

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

[MarksPoint in reply to Creas]

Interesting....do you know what actual numbers the NHS consider to be normal? I am in Australia and my pain doctor is often telling me that the 'normal numbers' given by different medical societies varies enormously country to country.....she is scathing of this practice.

[Creas in reply to MarksPoint]

Just googled this and NHS consider (for CRP) anything under 5 mg/L to be normal. That's a bit high though, I'd say. NHS even considers 10-15 to be only 'mildly elevated'. I don't think any inflammation is normal though the western diet makes it so - since these 'norms' are calculated by reference to averages amongst the relevant population. Perhaps they should refer to it as 'average for UK' rather than 'normal'. The average amongst people eating the Mediterranean diet is of course must closer to zero!

[PMRpro Ambassador]

Really anything new or unusual should be checked out - because it isn't always PMR and could be something that can be dealt with very easily or that needs more complex management.

[Buttonshutton in reply to PMRpro]

Thank you. I’m going to check it out tho that terrifies me. I didn’t want to assume PMR but was curious

[SnazzyD]

I’ve had pain like that when I was having pelvic ligament problems and pelvic floor strain. At the time I had niggles in various tendons as I got to low doses. It felt like I had been on a horse all day. It eased off in a pelvic bones but it was some time before i could do something strenuous without getting that feeling back. I went to a pelvic specialist physio eventually when a prolapse appeared at the advice of my GP.

[Buttonshutton in reply to SnazzyD]

Exactly that like been riding a horse or bike. I’ve recently had a friends large dog too and it’s started since then so did wonder if had pulled something walking him as he’s young and strong amd rubbish on his lead but that said o only walked him on his lead twice, my partner did it the rest of the time. I had our small dog. I’ve had this before too but only a few times and not very regularly like now. Thank you for replying. It’s reassuring to know someone else has had similar.

[IlovePorridge in reply to Buttonshutton]

Hi Buttons, I'm definitely no expert and can only speak from personal experience. I experience similar pain and discomfort in my thigh. pelvis and groin area. Mine is due to osteoarthritis in my hip. Speak to your GP to put your mind at ease. Health anxiety is awful too.

[Buttonshutton in reply to IlovePorridge]

Hello. Thank you for your reply. I know it’s awful. My friend has been diagnosed with a rare cancer. So that’s triggered me I think.

I’ve been to the doctors this morning and had an examination. The doctor couldn’t see or feel anything untoward and thinks it’s either I’ve pulled something or it’s the lovely PMR playing up. She’s a women’s health specialist so I got lucky to see her and she’s reassured me. Offered an ultrasound for further reassurance too

[Creas in reply to Buttonshutton]

I moved a giant sack of logs prior to getting a frozen shoulder which subsequently mutated into PMR. It only takes one ill-judged movement to cause all nature of damage when one's a bit older - I did something similar when I was helping my husband put our solar panels on the roof. I don't do any lifting now - just not worth the risk. The NHS physio didn't realise I had a frozen shoulder but a year or so later, a consultant saw it straight away and gave me an injection there and then which worked immediately. That shoulder pain never came back. I wish I'd seen that consultant when I first got the shoulder then I might never have got PMR. NHS really is a false economy for us, and for them and the taxpayers!

[LeeSaint]

Hello, I am 53 and have been diagnosed with PMR for 6 years. Luckily my wife is very understanding about my physical limitations some days. Yes I have hip joint pain as well. Most of the time it is not bad but then during flair ups it gets worse. When that happens I increase my daily prednisone from 5mg to 10mg for about a week until things calm back down. I have other chronic pain so I take methadone everyday. The prednisone is the med that helps the most with my PMR. A couple years ago I had to have my left shoulder replaced. Recovery sucked and took 2 years of PT. But the severe pain In that joint is gone. I am more limited on use but it is a trade off. Find a doctor you trust and will talk with you and explaine every aspect of treatment and possible alternative treatments and find what works best for you.. there is no 1 size fits all. The max dose of prednisone i take is 15mg a day, during severe flair ups for a week to 10 days then I always drop back to 5mg.. it is important to stay under 7.5mg for daily doses so your body doesn't stop making its own version of prednisone. I think it is called cortisol. Also remember you are not alone. There are other people in the world that understand what you are going through every day. Keep your spirits up and live life don't just survive. God bless.

[Shiba64]

Hi weirdly I've had exactly the same issue when I reduced to 4mg! I said it was if I'd slipped and done the splits and overstretched everything down there - yet I knew I hadn't. But as you say the discomfort wasn't there all the time. And also like you it started lower body - backache first then into my legs (knees to hips) then neck and shoulders. Totally against what the supposed norm is. I've always say it's cos I'm back to front and never do norm 🤣 I'm also coming up to 4 years and currently back up to 7mg as things not been great all over but it is easing - be assured you're not alone so don't worry it's something worse - maybe you need to up your dose? 😊

[Buttonshutton in reply to Shiba64]

Hi. Oh how strange is that. Sorry you’ve had it too. Yes exactly that. Splits or bike riding feeling. I’ve got a little bit of discomfort in my legs too which is as you know where started. Shoulders are ok. I maybe need to temporarily up it if some inflammation is creeping up but was so pleased got to 4…but suppose better to temp go up and get rid of any excess than leave it and end up at the top end again. It’s so misunderstood isn’t it. All this 18 months nonsense. Thank you for your reply and hope you feel better soon

[Shiba64 in reply to Buttonshutton]

I was pleased I'd got down to 4mg too and persevered for 4 weeks but then thought no can't put up with this. And yes it certainly isn't very well understood - though had a med review with a clinical pharmacist (a first ever) and she totally understood 😊 it was so nice to talk to someone that did know the condition.Hope you sort out and feel better soon too 😊