getting a diagnosis of pmr

[Mashed]

I developed sudden onset of severe bilateral hip girdle pain and stiffness on waking about 4 weeks ago . It goes as day wears on but not completely and comes back at night and disturbs my sleep. Also pain in upper arms back of thighs and neck although this is not as severe as hip pain. Also general feeling if unwellness when tired. Previously fit and well and active. ESR normal CPR 18 ( lab normal says 0-5) Gp wanted to refer me to a physio. I’m sure it’s PMR what are other’s experiences of getting a diagnosis. All other blood tests normal.

[SheffieldJane]

It wasn’t easy to get a diagnosis. Ask your doctor if you can trial Prednisalone for a couple of weeks. It is a diagnostic tool. You are in for blessed relief if it is.

[Mashed in reply to SheffieldJane]

Thank you for your reply and advice. I will definitely ask for this once the blood pressure is sorted out ( it went very high during my appointment but I’m sure it was because I was so stressed )

[PMR2011 in reply to Mashed]

Pain causes the BP to rise. They cannot consider that BP your usual until the pain is sorted.

[PMRpro Ambassador]

Hi and welcome!

Sounds very PMR-ish, very typical presentation and you even have raised CRP! Physio won't help PMR but maybe the physio will recognise they may do more damage than help.

I had no raised markers and it took me 5 years to get a label! Experiences range from that to just a few days before getting to try a moderate dose of pred.

In the meantime, if you have ANY visual symptoms, pain in the jaw when chewing that goes when you stop, scalp pain or headache - back to the doctor and tell them this could be giant cell arteritis and your sight is at risk. If they won't use some common sense, off to A&E and tell them all the signs.

[Mashed in reply to PMRpro]

Thank you for your reply and advice re GCA symptoms My CRP was 18 (0-5 normal) and GP thought it should 80+ to suggest PMR.

[PMRpro Ambassador in reply to Mashed]

Oh what nonsense! Where on earth did he pick that number from? Along with a bunny in a top hat or at the bingo?

Up to 20% of patients don't have raised levels of either ESR or CRP. Now an ESR of 80 might be a reasonable thought but plenty of us never got to those levels and 80 for CRP would be more suggestive of GCA. 18 for CRP is pretty high for most patients - and indicates a fair bit of inflammation so physio should NOT be the first stop.

[Missus835 in reply to Mashed]

When I had a PMR diagnosis in Jan. 22, CRP was 42. He's full of rubbish. Predisone helped my symptoms immediately. 20 mg to start. For 5 months my GP said the agony I was going thru was "old age". He has since retired. Best of luck with your journey. Stick with this forum, you will learn so much and it is beyond helpful.

[Body_bonkers in reply to Mashed]

GP is wrong as CRP of 10+ is enough for PMR diagnosis but it can also be normal. It's nearly two years since I started having symptoms and rheumatologists seem to change their minds like the weather which seems to be common amongst us ! Make sure they've done a thorough investigation to rule out other diagnosis before starting steroids because it becomes more difficult afterwards. The response to steroids is usually pretty fast in PMR (if initial dose is right) and was advised you can be on them up to three weeks without having to taper

[DorsetLady PMRGCAuk volunteer]

If it is PMR - and it certainly sounds suspiciously like it, this may give more info - and a trial of steroids for a week or two would probably confirm - not sure with CRP at 18 why GP hasn’t considered that -

healthunlocked.com/pmrgcauk...

[Mashed in reply to DorsetLady]

Thank you for your reply and suggestion.My blood pressure went sky high during consultation - I think that was due to my stress response after she told me her plan was a physio referral!! I have very healthy BP normally but now need to monitor x2 daily for a week before they will consider steroids as they can cause bp to elevate apparently

[DorsetLady PMRGCAuk volunteer in reply to Mashed]

Steroids can elevate BP, but not always horrendously so… and they do usually return to more normal levels as you reduce Pred.

But untreated inflammation caused by PMR can do damage as well - some doctors don’t seem to understand that - and are unreasonably paranoid about steroids….

Hope you get relief soon..

..and as advised CRP doesn’t have to be raised to be PMR , and certainly not in the 80s… mine was in 50s after 18 months of misdiagnosis- and I most certainly had GCA…

[piglette]

You must be very careful going to physios if it is PMR. You need to make sure they know about PMR.

[Gimme in reply to piglette]

Are you concerned that they might make you overdo it, or the possibility of actual mechanical damage? I don't mean to be disingenuous as it would seem to be common sense, but wondered if there is a specific reason. From personal experience, my range of movement is still pretty good and before there was a suggestion of PMR, I have been subjected to deep massage for the stiffness that meant that I couldn't sit down for a week. Is this the kind of thing, or are you thinking of even worse?

[PMRpro Ambassador in reply to Gimme]

Repetitive movements are poison in PMR - and what does most physio in the UK comprise? Handing over a sheet of generic exercises and sending you away to do them without checking, these days after a telephone appointment even. I have physio here that is very useful - but she targets myofascial trigger points and I have at least 45 min, much of it hands on and exercises that are rather difficult without the equipment she has. You can't do exercises if the muscles are in spasm, they have to be released first.

The work on myofascial trigger points is similar to deep massage but has never left worse - even if a bit sore for a day or two.

[Gimme in reply to PMRpro]

Interesting, thanks. I got the generic exercises too. I'm not sure how much one on one physio happens on the NHS nowadays, now you mention it. They seem to send people to classes, or at least that is what I was offered. The only option I have found is to go to a good sports physio privately. Though, I've never found physio much help for anything tbh. Even if they free me up, I ping straight back to where I was in a few hours and you have hit the nail on the head, my muscles are in spasm. Mind you, if I do have PMR and I have had it for as long as I think I might have, the lack of progress might make more sense. Oh gosh, I do find all this very depressing.

[PMRpro Ambassador in reply to Gimme]

I had a triple approach here when my entire back went into spasm at the start of a major PMR flare 6 months after my husband died. My rheumy does what he calls neural therapy when it is really bad - subcutaneous injections all over my back, specifically over trigger points, and sometimes daily infusions of high dose NSAIDs to relax the spasmed muscles, on that first day when I was taken to the ED by ambulance as I could not move without excruciating pain, one session with him meant I walked out under my own steam! I then had at least 12 hands on physio appointments over several months, probably more because originally I could barely walk even with crutches,

And I attend the Pain Clinic in the long term where she does the subcutaneous needling every 4 to 6 weeks - called by the Germans quaddeln after the blisters it forms, it is a technique in which an anaesthetic, lidocaine, is injected just under the skin. Many doctors use this treatment for painful muscle tension in the neck and shoulder area. The local anaesthetic is injected directly into and around the hardened muscles and results in speedy relief but it can be done with saline, steroid or even dry. The concept is that it stimulates the underlying muscle tissue to heal itself and relax. It hurts, burns, like hell at the time - but it is very rare for a patient to refuse them when offered and many of us actually ask for them because we know it works.

[Gimme in reply to PMRpro]

Goodness, you have been through it. That must have been awful.

[PMRpro Ambassador in reply to Gimme]

I considered asking for a bed at the hospital as I spent so much time there!

[Gimme in reply to PMRpro]

Anyone who still describes this as a benign illness needs their heads looking at. I have never been anywhere near as bad as you were, but it still makes me pretty miserable at times.

[PMRpro Ambassador in reply to Gimme]

Actually, in general I don't think it has been that bad apart from the 5 years undiagnosed at the start. The reason last year was so bad was really to blame on Covid when I didn't have any of my usual support plus my husband fell and fractured his spine just before Covid, and that preceded his decline - also with no support of any sort due to Covid and lockdown effects. I got through the winter OK and then it all hit at once. I have had myofascial pain syndrome most of my life and that impacts on a mild scoliosis - both together mounts up.

But you are right - nothing benign about PMR for many people.

[Missus835 in reply to PMRpro]

Wishing I had been able to afford the needling when my spasms began. Now into front ribs. Ugh.

[potterylady in reply to PMRpro]

That is a really interesting treatment. So glad it helps.

And also so horrible that you weren't diagnosed until after 5 years of symptoms.

[piglette in reply to Gimme]

My medical centre has an in-house physio. In fact he is private and rents a room. The GPs are always recommending physio on the NHS or private if you want it faster.

[Gimme in reply to PMRpro]

However, you have both made me think. I wonder if any of the physios down the gym had any experience with PMR.

[Bridge31]

Could you try another GP at the practice and ask for a trial of Pred. ? You shouldn’t have to be in pain whilst you wait for a physio appointment.

Some GPS’s seem to want to refer you to a physio for anything pain related. I don’t know if it’s first on their tick list or whether it’s just easier for them to get through their patient list.

[Mashed in reply to Bridge31]

Thank you, I think the physio referral is definitely on their tick list!

[Brooklyn747]

Your symptoms sound suspiciously similar to p.m.r.I went to a rhummatologist who said my problem was mechanical and referred me to a physiotherapist. After 3 sessions and a twice daily regime of exercises it helped not one iota. Then acupuncture, then cannibis oil then finally prednisone...Hallelujah. 20 months later have tapered to a small dose, have to say this journey is very challenging.

Wishing you a proper diagnosis soon.

Hope it's not p.m.r. but would be surprised if it isn't 🤔

[Mashed in reply to Brooklyn747]

Thank you for your reply. Oh dear I’m so sorry to hear this. Did you have any raised inflammatory markers? I was wondering if I should just make a private appointment to see a rheumatologist but your experience is making me doubt whether it’s worth it? It’s all very confusing isn’t it.

[PMRpro Ambassador in reply to Mashed]

It depends who you see - if you ask for a recommendation here and say where you live and how far you are willing to travel to a private rheumy, you will get on better, Private rheumies are only NHS rheumies who do private work so if they are not good in the NHS they are unlikely to be better outside it. But there are plenty of good ones around when you know.

[Mashed in reply to PMRpro]

Thank you for your reply and advice re using this really helpful platform to ask about rheumatologists in my area. I will do that now.

[Brooklyn747 in reply to Mashed]

Hi Mashed, it wasn't until my 3rd blood test that my C.R.P. was markedly elevated. That was 4 months of horrible pain.

Because of the blood results the local doctor prescribed prednisone.

Before that she diagnosed me with fibromyalgia and put me on Celebrex which didn't dent the pain.

Seems like medicos rely too much on test results rather than a pas symptoms.

Wishing you well, I so hate this disease.

[Brooklyn747 in reply to Mashed]

I did reply to you Mashed but accidentally put it under PMRPRO comment to you...sorry

[Daffodilia]

NHS physios didn’t recognise my PMR - gave me exercises for lower back pain and shoulder which did not help at all- private one referred me to GP with a letter which helped

[Mashed in reply to Daffodilia]

Thank you for your reply. I may consider seeing a private physio to hopefully get them to write to GP with their opinion just as you did.

[Daffodilia in reply to Mashed]

The nhs physios just did not listen to what I said - the lady private physio listened and actually examined me without outer clothes - said I won't treat you but I will send a letter to your doctor - you have a fever and bilateral pain and stiffness

[marionofnorwich]

I developed symptoms in lockdown. When it lifted enough I went to my osteopath and after three treatments nothing had changed (normally 1 or 2 treatments sorts out any of my back problems) so I called the GP. I was referred straight to a physio service (no face-to-face, all on the phone) and at the end of the phone call he said he thought I had PMR and referred me back to the doc. I must have had a blood test but don't remember that but very quickly started on 15mg of Pred. Within three days I was cleaning and active whereas at the start of the week I couldn't be bothered to pick up a sock. But diagnosis was very quick once I was able to get an appointment

[PMRnewbie2017]

I have classic PMR where bloods track my symptoms. As this only started four weeks ago for you, you may find that your ESR and CRP continue to rise if you're left untreated. Could you try a course of Ibuprofen to prove to the GP that the pain and stiffness is not mediated by Prostaglandins. In PMR our pain is mediated by Interleukin 6 and prostaglandin inhibitors as mentioned above don't work. I also get the feeling of unwellness if a flare is brewing and for me that's another pointer, even if my muscles aren't too sore. For the record, when i first presented 6 years ago i was told it was post viral fatigue because i also had had a heavy cold!! Keep at it and good luck.

[Mashed in reply to PMRnewbie2017]

Thank you for your reply. I have told them painkillers don’t seem to make much difference. They are repeating a blood test and doing another for something else. I’m unsure for what yet as haven’t seen the forms ( complicated system at my surgery!!) but I hope you’re right that it points in the direction of helping with a diagnosis. It’s weird isn’t it, it’s like you’re pleading with them to give you a diagnosis for a horrible disease and something that you really don’t want to have!

[sidra1968]

Sounds like PMR to me. Exercise made my PMR worse, so be careful there. And tell them you want to trial Prednisone for 2 weeks..you'll know if it's working.

[cranberryt]

I haven’t read all the commebts before replying, so I apologize for that. To get a PMR diagnosis, first everything else must he ruled out. (like RA, thyroid, Lyme, etc). Did your dr. run all those tests? I did a month of physio before I was diagnosed and during that month I went from slight pain in my groin to not being able to walk or dress myself. At that point my doctor ran all the other tests and gave my a prednisone trial followed by a diagnosis of PMR. So I would push for more tests if you haven’t had them. I can tell you the only thing that helped from physio was the deep heat towels at the end. 😂