Could this be PMR?

[browny52]

Hi everyone. Since February this year I’ve started to develop pain in various parts of my body. First it was my left shoulder which I put down to sitting awkwardly for too long. This pain seemed to randomly come and go. I was doing a lot of sport back then and attending regular spinning classes. I then got terrible pain in my left hip and thigh which also spread to my knee. This I put down to a spinning injury, so stopped spinning. To cut a long story short I continued with other sports and then got pain in my right hip and sciatica down my right leg and into my foot. I stopped doing everything sportwise and this made everything much worse. I couldn’t sit down for the pain which was now in my backside. Deep tissue massage has helped a bit and I can now sit albeit uncomfortably.

This week I have now started to develop pain in my right shoulder and at the base of my neck. I’ve had a lower back MRI which was clear and am awaiting the results of a hip MRI.

I get no stiffness apart from when I get out of bed but I’ve been like that for years. Once I’ve walked to the bathroom I’m fine. My energy levels are fine. My esr and crp are normal. I’m 52 years old. I just cannot shift the constant pain. Sometimes the shoulder pain stops then comes back. I sometimes get pain in my thumbs and big toes. And couple of times I’ve woken up unable to swallow without extreme pain and feeling like I’ve dislocated my jaw. I also wake up in the night with a painful ear as if ive squashed it too hard. The left bottom/hip pain is a burning sensation. If it’s bad I also feel like the left side of my face is going numb. I’ve been doing physio since February and although this has helped a bit, I cannot shift these pains. One physio has suggested pmr but my GP dismissed it when my bloods came back normal. Could this PMR or just a collection of sports injuries? Any advice gratefully received.

[Marilyn1959]

Hi browny52. My case sounds similar to yours gradual build up of symptoms, various tests on different body parts over six month period, bloods normal. Like you it was my physio who suggested PMR. In the end I paid for an private initial consultation with a rheumatologist who diagnosed it straight away despite normal bloods. I have stayed with him for treatment under the NHS, so only the initial consultation cost me. Best money I have ever spent!

Certainly I think you need a second opinion, as unfortunately some GP'S do not understand PMR, which is not led by bloods but symptoms. GP'S can also be fixed on age, with some under the misconception it can't be PMR at 52. Believe me it can, so don't be fobbed off.

I did not however have any problems with jaw and ear. This concerns me, since it could be associated with GCA. GCA considered a medical emergency since you can loose your sight if it is not treated. I do not have experience of GCA, but others with more knowledge and experience of it will be a long shortly to advise.

Keep in touch to let us know how you get on.

[browny52 in reply to Marilyn1959]

Thank you so much Marilyn1959. Did you look to see a particular rheumatologist or just find one locally? I’m wondering if I should do the same.

[SheffieldJane]

It could be PMR. A significant percentage of sufferers never show any abnormality in their bloods. The best way to find out is to have an experimental, week’s,PMR dose. If you obtain blessed relief, then PMR is your culprit. Let us know how you get on.

PMR can be treated by a clued up GP but some of us see a Rheumatologist.

[piglette]

You are in the problem position of being young for PMR and not having your increased blood markers. 20% of people do not have increased markers and people younger than 52 do get PMR, we seem to be facing doctors who can be a bit blinkered. You could ask your doctor to give you steroids/pred for a week just to test to see if it helps. You should have a pretty magical result if it does. If it doesn’t you can just stop and the doctor can look for another reason for your pain.

[browny52]

Thank you so much for your replies. I keep trying to put PMR to the back of my mind because I really don’t want it to be that. It’s been going on for so long now and I just don’t seem to be getting better. One of the main reasons I’ve thought it wasn’t PMR was because I have no stiffness and full range of joint motion. Just daily pain. My energy levels are also pretty good, but I guess if I am at the beginning this could come later. Will let you know how I get on. Once again thank you for the replies.

[HeronNS]

Has your doctor run the usual tests to rule out other things which cause chronic pain? Is your pain now symmetrical - very similar on both sides of your body - although it started on one side? Then the suggestion to have the one week prednisone trial is probably the next step. If pred doesn't help then it's not likely to be PMR. You would be prescribed something like 15 or 20 mg per day for a week and should note quite a dramatic improvement within a few days at most. Sometimes people need a little more to achieve full or at least 70% remission of pain, but not too much more or the diagnosis of PMR would have to be questioned. A lot of things will respond to high dose pred, but a good response to a relatively low dose is often the key diagnostic tool to confirm PMR.

Some doctors like to insist their patient has fibromyalgia, A good response to pred rules that out as fibro is not inflammatory.

I still had full range of motion until a few weeks before I finally got a diagnosis. It was the difficulty doing some long standing physio exercises plus a dramatic weight loss which drove me to a new doctor and a diagnosis. I must have had some level of PMR for at least 14 months before diagnosis and in retrospect I think I had very early symptoms quite a while before then even.

Good luck. Do let us know how you get on.

[browny52 in reply to HeronNS]

Hi HeronNS, they’ve run some bloods but I’m not sure what they were. The only thing I know is that I tested positive for the rheumatoid factor. Dr said this was nothing though as plenty of people have it without illness. I have pain in both hips but one side will always be worse that the other and this changes daily. The same with my shoulders. The left side has been agony but as the left eases off a bit the right side seems to start. None of it ever seems to get better.

[Constance13 in reply to browny52]

It could be “travelling arthritis”. Just a thought!

[browny52 in reply to Constance13]

Ooh I’ve not heard of that. Will head over to google and have a look. Thank you.

[piglette in reply to browny52]

I always seem to have a high positive rheumatoid factor when tested and the doctor always says it is a false positive, which I believe it is. I always ask for a printout of my results, being a nerd I can see what is going on!!

[browny52 in reply to piglette]

I should definitely do this. I have no idea what’s been tested and what hasn’t.

[PMRnewbie2017]

I agree with everyone who has replied. You could try taking an anti inflammatory like ibuprofen for a couple of days. I would suggest 400 mg three times a day with food. If this sorts out the pain then PMR is not the culprit. You could also ask for a rheumatoid factor test. There are also blood tests for lupus and spondylitis.

The ear,jaw and facial numbness is concerning. I had facial numbness and minor scalp tenderness plus shoulder, hip and knee pain with morning stiffness. Diagnosed with PMR and GCA but my markers were through the roof!

[browny52 in reply to PMRnewbie2017]

Hi PMRnewbit2017. I’m not sure what else they’ve tested for but I did test positive for the rheumatoid factor. The dr brushed that off as nothing. Earlier on in this journey I did a week of 3 times a day ibuprofen. It did help a bit if I remember rightly. I take the odd dose now and again if things get bad but that doesn’t seem to do anything, but maybe I should try and do it for a few days and see what happens.

[piglette in reply to browny52]

If Ibuprofen works it is probably helping something other than PMR as PMR seems to only really work with pred. It is not a good idea to take Ibuprofen with pred as the two drugs are contra indicative. That seems true of all NSAIDs which Ibuprofen is.

[Hindags]

I too agree with everyone else who has given you advice. If you are ok to take ibuprofen, then I’d start with Heron’s suggestion while you are waiting for your MD to give you a trial of Prednisone. My lack of response to ibuprofen was part of the picture my MD used to diagnose me. My gut says starting at 20 Pred would be a better test than 15.

I had unilateral right shoulder pain for about a month and then the full symptoms hit : low grade fever, bilateral pain in shoulders and groin, sky high markers. After three weeks on 15 my Rheumy put me up to 20 to clear out the inflammation more fully and more quickly. Fatigue has never been a big part of PMR for me. That was about 22 months ago. I’m at 4 now trying for 3 on a very slow taper.

[browny52 in reply to Hindags]

Hi Hindags, I’m definitely going to try a few days of ibuprofen and see what happens. Thank you to you and everyone else who has taken the time to give me some help. I really appreciate it. I’ve been getting so desperate to get better.

[piglette in reply to browny52]

I have replied to your other posts, I did not realise you were not taking pred. You say that Ibuprofen does not really work, which makes it sound more like PMR. Do you think that your doctor would prescribe steroids for a week as a trial?

[browny52 in reply to piglette]

Hi Piglette, I doubt it, they just keep sending me to physio. I keep doing the exercises and things have steadily got worse. The last time, the physio’s sent me off to the specialist musculoskeletal unit and the guy I saw there was rather dismissive but I’m now thinking that he too may have thought it was PMR. He offered to MRI my hips and in the next breath said “it won’t show anything” 😩

[piglette in reply to browny52]

Have you had your CRP and ESR levels checked? It may show raised levels. PMR is diagnosed by eliminating everything else it can be, there is no straightforward diagnosis unfortunately. Some doctors give their patients a trial of steroids for a week, if you get a magical result the chances are you have PMR, if not you just stop the steroids and they should look for some other diagnosis. Is it worth trying your doctor again? Go back until they diagnose something, don’t let them fob you off. I must admit I went to my doctor who kept saying I had a virus, in the end I went privately to a rheumatologist, I was in agony by then, who diagnosed PMR in about five seconds. He gave me pred and within 15 hours if taking it I was back in the land if the living.

[browny52 in reply to piglette]

I had both esr and crp done back in July and they were normal. I expect the MSK lot will send me back to doctors again. I’ll suggest they refer m to a rheumatologist and see what happens. Thanks for all your help Piglette.

[piglette in reply to browny52]

20% of people do not have raised inflammation markers do you could be one of them. Best of luck.