I'm absolutely certain that I have PMR. But my blood tests all came back normal, including the erythrocyte sedimentation rate and the inflammatory marker test, and I'm only 56. My GP has just left me on NSAIDS and paracetamol with physio. It's not working. How common is it to have PMR with no obvious inflammation?
Also, if cortisol relieves PMR, is it fair to say that the cause of PMR is adrenal insufficiency, possibly caused by trauma or prolonged stress? I've had my symptoms for about 10 months now though I only went to the doctor on the second occasion when it went particularly acute, about a month ago.
When the symptoms first began, it was just my left shoulder and my neck and I put it down to some ill-judged asymmetrical lifting I did. I play tennis (6 hours a week plus 4 hour matches some weekends) with my right arm and carried on doing that. It was only when the pain didn't seem to go away and I couldn't play tennis anymore as the pain had moved to the right shoulder and hip that I went to the doctor.
I'd be very interested to know if anyone else has had any similar experience or pearls of wisdom for me! I've read with great interest most of the posts here.
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Creas
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A lot of people have been forced to go privately, including myself. My GP kept saying I had a virus. I was in so much pain. If you can get your GP to give you steroids for a week or so as a test, in my case the steroids had a magical effect pretty quickly. If they work it is pretty likely it is PMR. If they don’t work your GP should try and find out what the problem is. Around 20% of people do not have raised inflammation markers for some unknown reason.
Yes, I'd read that (about trying steroids to see if they work) - will keep on at the GP. I think they are expecting the physio to recommend the next step but I have to wait a few weeks for that appt. Interesting you say about 20% don't have inflammation - that's quite a large minority.
The physio is not the person to recommend the next step. From your GPs point of view a week of steroids as a trial is no skin of their nose. As DorsetLady says studies say up to around 20% do not have raised inflammation markers. The real point is that some people do fall into this group even if it were only 1%!! No one really knows why we get PMR, but in my case I am pretty certain it was stress.
Thank you - yes, I asked to try steroids briefly but GP said no and I'm being forced down the NHS slow route. Hope I don't go blind from Occult GCA in the meantime! It's frustrating.
Hello, it still sounds a bit lopsided rather than bilateral so if it were me I’d go to a good osteopath or a very good physio who is good at diagnosing. GP’s are not musculoskeletal specialists and you need a bit more evidence. If their findings support your thoughts it might add more weight. They do need to know about PMR though.
Up to 20% of people can have normal inflammation markers.
Prednisolone is much more potent than natural cortisol and it has great wide ranging anti inflammatory properties. Our own cortisol isn’t up to the job even if it is being produced normally so it isn’t that our own cortisol production isn’t happening. Our own cortisol production stops during treatment because the adrenal glands don’t need to produce cortisol while the body is awash with Pred. When the dose drops below about 8mg or so, the adrenal glands need to make up the difference.
It did seem to start off lopsided but now is quite bilateral. I wonder if the damage I did with lifting, which initially affected one side, triggered the PMR. Yes, I will follow it up with the physio. It's an NHS one so not sure how good it will be but I think it's outsourced so that's promising.
Interested that even if adrenals are fully functioning they don't produce enough to relieve PMR. I'm terribly curious to know what causes it. Surely there must be some inkling.
If they did whack up production to the levels needed to deal with this very abnormal level of inflammation you’d probably have all the Cushingoid side effects of Pred, like people with Cushing’s disease do.
Hi Creas. My story is similar but I'm 20 yrs older. Pain in the back of my head and neck then stiffness spreading to my hips. A friend with PMR suggested it might be that so I researched everything I could find. A visit to the GP resulted in blood test which came back within 'normal' range. He refused steroids. In desperation I used someone elses pred to see if it worked its speedy magic and it did. I then wrote the saga and sent it to the head if our medical practice and was prescribed pred. It was a battle but not uncommon from what I've read on here. Good luck.
Ah, now there's an idea! I 'borrowed' a friend's naxopren initially when I was struggling even to get basic pain relief from my GP. I wonder if she has any pred in her cupboard. I'm going to Cyprus soon so might see someone there. Much more efficient in my experience.
The standard definition of PMR is "an auto immune illness characterised by over production of Interleukin 6". Having a low cortisol level doesn't cause the symptoms which we call PMR. Unfortunately we don't know what causes PMR but we are learning that it is a complex illness which affects muscle and connective tissue and has different presentations. There is no test for diagnosis, but one reliable "test" is a short course of Pred.
Some of that sounds similar to me. I was told that I had PMR in Nov 22 and initially refused pred. Then I got flu and a chest infection in January, and taking the steroids for the chest infection clinched it.
I've never had raised inflammatory markers, but I am certain I have PMR from everything that I have read in this group. The Rheumatologist that I saw 2 or 3 weeks ago now thinks that I don't have PMR, although he said that I did when I spoke to him in May, and he wants me off the pred so that he can see what else is going on. Ideally, I want off the pred too, but when I spoke to my GP after, she said well, that's what we all want, but don't be hard on yourself, your body might have other ideas, which sounded a lot more compassionate than the grumpy rheumatologist. Though, I am happy that he is considering that I might have more than one thing going on, which is what I have believed all along. I get the impression that he is leaning towards late onset RA now. I just wish that they would stop contradicting themselves and each other, instead of this nebulous maybe/maybe not diagnosis. I get a different opinion from each person I see and no consistency of care.
I'm not sure that it is that unusual to have one side that is worse than the other, after all, none of us are completely symmetrical, and if you are very dominant on one side, the muscles will get more use on that side and it makes sense to me that it would show up more on that side. Especially as I have noticed that the pain and stiffness is aggravated by repetitive movements that are one sided. My symptoms initially started on the right and slowly spread to the other side, but the right remains much worse than the other side most of the time.
I initially put my symptoms down to sporting injuries that didn't respond to normal treatments. I reckon that I have had the PMR for a very long time and the pattern has been flaring and remitting. I would bet that my unresponsive injuries were flares and rather than them healing, the autoimmune activity died down for a bit. I described the pattern to the GP that I saw last week, without saying what I thought has been happening, and she even suggested herself that the autoimmune activity might have been going on as far back as my 20s. Though, all that is so long ago, it's all rather speculative now.
oh, and I definitely put my PMR down to years of prolonged work stress and ongoing anxiety starting from personal trauma at a young age. Too much bad stress does horrible things to your body.
Mine started off on the left shoulder/arm/neck despite me playing tennis with my right arm (a lot of tennis, I'm team captain - 6 hours a week and 10 hours in the weeks when there's a match at the weekend) but spread to the right arm/shoulder and the hips generally. Still no diagnosis - just being given painkillers by the GP. Naproxen latterly taken with paracetamol. They then added amitriptyline into that equation and I stopped that pretty soon as it wasn't doing anything to help.
The drugs don't last the night so are useless in the middle of the night when my symptoms are at their worst and I wake in agony. The worst of the pain tends to go by lunchtime though I can always feel the pain in the neck and shoulders if I move them.
I've been told I was referred to rheumatology on 9th Sep but was told that even in they'd put me as an emergency, it would be many months before I see anyone, and that first referral is just for 'an opinion' - not even a scan.
I might see someone in Cyprus next month while I'm on holiday - you can see who you like there within a couple of days and they'll do an appropriate scan and interpret it and give you a prescription all in one appointment for less than 100euros. Much better than our ludicrous system!
Trouble is, I doubt you will get the one scan that really shows much in PMR, a PET-CT though an ultrasound might be enough for showing shoulder bursitis.
Up to 20% of patients have inflammation markers that are not outside the "normal range" - it depends on the source you quote, others are lower but at least 1 in 10 show normal range markers although that doesn't mean they are not raised for you. Mine have never been particularly high, bumping along at about 16-18 for weeks during a massive flare when I could barely walk. My personal normal is low single figures but 16-18 is well within "normal range". But the normal range is NOT a range that is acceptable for one patient - it is the range that covers 95% of a large population of nominally healthy persons used to establish the normal range.
As for "only 56", the guidelines give 50 as the starting age although good rheumies say they have patients under 50 who have symptoms that can only be attributed to PMR as there is no evidence of anything else. The youngest patient in the literature was 24 years old.
Cortisol does NOT relieve PMR - that is why pred is used, it is a far more effective antiinflammatory and they are two different substances. Both are corticosteroids but they are different in much the same way German shepherds and corgies are both dogs. Cortisol has a role in normal physiology where inflammation actually has an important role in how the body runs - inflammation is not always bad. There are people who allege PMR is caused by adrenal insufficiency and in a few PMR patients they have found low adrenal function but it is by no means universal and not regarded as the CAUSE of PMR.
The "cause" is a deranged immune system which is unable to recognise body as self and turns on its own tissues creating inflammation because one (or more) particular inflammatory substance is being produced in an unregulated manner. The derangement is thought to be the result of years of insults to the immune system and eventually something is the final straw that breaks the camel's back - both the insults and the final straw are thought to be a wide range of events: illness, trauma, stress, environmental or chemical stresses which can include drugs, vaccines, pollution and so on. Behind that, there is also a genetic component that makes some people more likely to develop it but not in the hereditary sense, more making you susceptible to various things but that is there, it still requires that final trigger to start it all off.
It is also not a single, heterogenous disorder, there are many different faces of PMR, varying in age, presentation, duration, severity. But too many doctors think the text book they saw at medical school covers us all - and want a one size fits all diagnosis and management. Doesn't work ...
Hello for me it was my physio and not the doctor suggested PMR to me. That was on a pre physio telephone appointment.I tyen contacted my GP abd explained and like PMRPro said with steriods if the pain goes then its likely to be PMR.
I would add that usually PMR is Bi- lateral which is another pointer.
Many GP,s dont understand PMR although my GP's have been amazing.
PMRpro didn't say if the symptoms go with pred it is likely to be PMR, it was someone else. That is only one brick in the wall of evidence although there are doctors who say that, Other things respond to pred as well including LORA (late onset RA) and the critical point is the dose: PMR is felt to be characteristic in responding well to moderate doses - 15-20mg - but in not all patients, some doctor give too much or too little and that clouds the view.
It was my GP that said 'if it (Pred) works, then it's likely to be PMR and if it doesn't, it probably isn't and you can stop taking Pred with no harm done'.
For me, it worked within about 4 hours and so I don't understand why other GPs don't think along the same lines (but I am not a medic!).
It isn't as simple as that though - if pred doesn't work it is unlikely to be PMR, but for all sorts of reasons, some people need more than 15mg to get the improvement. I also had a result in 6 hours with 15mg, from almost immobile to able to walk down and back up stairs normally. The rheumy didn't want to know! But there are others for whom 20mg doesn't work in hours but it does in 10 days. And others who got little result but a PET-CT showed all the signs of PMR - difficult to argue with that. What pred can show is it isn't fibromyalgia - it isn't inflammatory and doesn't respond to pred.
Why don't they think that way? Because they are terrified of pred ...
When you say you have had all the tests done are you only talking about blood tests?Have you also been given any x-rays or checked for Oestoarthritis, or given a nerve pain assessment?
Of course , the possibility is still there for you to have PMR even without raised blood markers but there are other conditions that seem to mirror PMR pain and can be just as debilitating which are often triggered by Stress and Overactivity too which don't respond as well to , or require Steroids that is good to rule out at first.
Fibromyalgia is one of these and this neurological pain condition can occur in the hips , neck and shoulders first. It doesn't respond well to steroids or NSAIDs for most people and is usually improved with nerve relaxant medications in combination, like Pregabalin or Duloxetine with Paracetamol and , Gentle Physiotherapy, Paced Activity and Trigger Avoidance. It requires testing by having a pain score assessment and full physical examination to find out which pain points are effected. The GP can do this and can trial you on a low dose of nerve pain medication to assess you response.
Fibromyalgia can occur because of repeated Stress and trauma causing a change in the pain signalling response between body and brain.
OA also requires x-rays and scintigraphy, it can be helped by NSAIDs but sometimes also requires nerve pain assistance when it is first developing and is improved by similar physiotherapy, Diet and pacing activities to Fibromyalgia.
Have you also had blood tests for ANA , Full Blood Count, Ferritin/ Iron, Sodium , Potassium ( Kidney Panel) Calcium, Vitamin D , Vitamin B12 and Folates. Very low levels of these nutrients can cause similar pain and muscle problems to other illnesses and are worth ruling out early on , and ANA can help rule out other inflammatory conditions like Reactive or Rheumatoid Arthritis. You can request these tests on the NHS from your GP if they have not been checked yet.
Get the results because if you are not deficient but have borderline low results this can still be adding to you symptoms and will only continue to get worse without diet changes or supplementation while your body is dealing with pain or inflammation.
You sound like you could benefit from being referred to a Rheumatologist whom is experienced in treating both PMR and other conditions like Fibromyalgia and OA, although this will take some time on the NHS. If you are able to it may be worth going for a private consultation with a recommended Rheumatologist in your area whom also has an NHS list.
This is because you can have an initial appointment with them privately but then ask to be included onto their NHS list for further tests and treatment which makes this option more affordable.
Good luck with finding the answers and take care , Bee
thank you for all that - just rushing out the door but will respond properly later! I haven't had any scans / xrays yet. I've had it for at least 10 months and have only a month ago been to my GP's surgery.
I saw a chiropractor for the first time shortly before eventually and reluctantly dragging myself to the NHS. The chiropractor said my lowest two cervical vertebrae are fused and I have spondylitis of the neck, osteoarthritis of the shoulders and should stop playing tennis and riding horses but do yoga and pilates instead. She also thinks I may have a rudimentary rib on my lowest cervical vertebrae. A friend of my mother's who was a very eminent osteopath said that a lot of chiropractors and osteopaths talk utter nonsense and not to place too much faith in what she said.
Just to jump in on what everyone else has advised. I was diagnosed at 46 and then pmr went into remission but came back again when I was 54.
However in view of your past activities I think I would be asking my gp for xrays and/or an mri to actually see what's going on with the physical structures in your neck and shoulders.
I say this as my past occupation was an exercise teacher and because I was constantly using my body to do the same movements over and over I have now got osteoarthritis in both my ACJs in my shoulders. I was also diagnosed with tennis elbow having never played tennis. This all pre-dates the PMR and was diagnosed prior to the PMR diagnosis.
I think it would be prudent to have imaging done just to rule out any mechanical issues before launching into taking prednisolone long term. I still need some antinflammatories when these other issues flare.
thank you, yes - I'm hoping I'll eventually get an appropriate scan. I'm still playing (doubles) tennis now - matches last weekend and the one before. My acute pain has gone by lunchtime just leaving a dull ache and I actually feel a lot better for the tennis. Won all four sets both weekends with my partner. I can't bear the thought of not playing tennis. It's the only exercise I actually enjoy!
I was similar. Aged 59 and had several visits to GP; X-rays, tests, etc but no diagnosis. Then a private Physio suggested PMR and wrote to GP but they ignored it saying no markers to confirm. A new GP started at the practice and instantly prescribed Pred saying 'if it works, it probably is PMR and if doesn't, it probably isn't and you can stop taking it within a week with no harm done'.
It worked within about 4 hours and about 3 years later after a very careful tapering down of the dose, I was PMR free.
Except none of the possible signs or symptom CONFIRM PMR, each is just a brick in the wall of evidence. When will they learn to think!!! Good on your new GP!
lack of inflammatory markers delayed my PMR diagnosis at the time I was unable to get out of bed or care for myself fortunately my GP kept taking labs because my white blood cells were very high every visit my inflammatory markers kept rising until eventually they were high then very high my regular GP was on vacation and a young Dr. Who was filling in decided it was PMR she started me on prednisone and less than 24hrs it was obvious she was spot on.. rheumatologist delayed calling it PMR which left the door open to different treatments/meds my official diagnosis is “PMR like” I am one of 5 males she is seeing since vaccination
Mine also came on after suddenly playing many hours of pickleball. Age 71. One shoulder had been acting up for two years. Then it got bad and oddly, both of my perfectly good hips were excruciating, back of my neck, shoulder blades. collarbones and pelvis. I didn't have a clue until the also perfectly good left shoulder joined in and I felt like all four wheels had come off. It dawned on me that it was PMR, my dad had it. Beached whale, watch me try to get out of bed.
My labs were also normal but I had already been taking 20mg prednisone just to be able to fly home from a trip. During a taper flare in July my CRP jumped up to 16 from 3.
Nasty rheum I finally got in to see was so offended that I diagnosed myself, that he refused to even consider PMR. I have two experienced Internal Medicine specialists in my family who validated what I was thinking and advised every step of the way, hubby and daughter.
The rheum was very skeptical that I had lupus in my 20's, and Reynaud's. I took steroids and Plaquenil for 7 years back then so I'm not so scared of prednisone. Diagnosis, osteoarthritis, no mention of PMR, lol. I know what this is. He did rule out fibro and RA. He refused to accept me as a patient, too pushy, lol.
My GP is so afraid of steroids, and inexperienced, that she won't deal with my PMR without a validating rheum. So stuck with having hubby refill my RX. (But grateful to have the unusual resources)
We added hydroxychloroquine early since we had a big stash in house, and recently I went to a pain clinic and got started on very low dose naltrexone. Taking a little bit of estrogen, progesterone for my bones, like 1/7 dose, magnesium, vit D, thyroid. I'm having trouble tapering down from 20mg in March, at 12.5 now and hurting.
As a doctor's wife in a very small town I have been able to stay out of the medical system for 38 years, doing most everything almost under the radar for privacy reasons. Husband is the same, we access medical care in another town where our neighbors can't read our medical records.
I was not real active until pickleball last winter. It was a miracle for me, getting in such good shape, the social aspect and participating in the magic of so many people just laughing out loud. Carefully building my leg strength so I can play a little after taking a break, otherwise it can be "crippleball", lol.
This is a common condition that is largely ignored. We end up on our own waiting for it to go away, while we yo yo trying to taper off steroids.
Similar story, I hope it helps a little. The more you know the more assertive you can be with your doctors.
I've just read your interesting post which raised my hope that I have this obscure PMR condition. I have been unwell for at least a year with a variety of painful symptoms, which I have linked to PMR but my GP does not agree. Like you, my blood results are all normal incl. ESR; I'm due to see the GP next week to discuss further. I have been referred to an NHS Neurologist for intermittent imbalance and ear/neck/gland issues but have to wait 40 weeks. ENT Consultant did not find any cause for these ear pains. I too thought I'd pulled a muscle in right shoulder but this has lasted 3 months (Appt with Physio in a few weeks). I may seek help via a Homeopathic Practitioner, as these pains are dominating my life. Thank you for your post.
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