Really worried, got horrific shoulder pain and stiffness almost overnight.....been in real pain and got in touch with my GP. He sent me for X-rays and blood tests.
CPR was raised, vitamin D slightly lower than recommended at 49. My x-rays showed arthritis in both shoulders and one elbow.....still waiting for my RF to come back. My GP believes it's possibly PMR but with visible arthritis in elbow and both shoulders joints is that even possible?
I don't have any hand or foot issues and this literally came totally out of the blue.....I'm absolutely gutted and I just think that it can't be anything else but RF due to the x-rays.
What should my next move be? I can access a Rheumatologist through by healthcare insurance but I'm currently struggling to sleep due to the pain in my shoulders.
I just feel that RA would be the end of my life and so actually keen for it to be PMR but I just can't see how it can be.
Any thoughts or ideas greatly appreciated
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Paulx222
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Oh dear Paulx222, I can tell that you are very shocked and have gone into crisis mode, this won’t help. Please try to calm down and stop scaring yourself with the Internet, I would definitely want to see a good Rheumatologist and nail down a reliable diagnosis and treatment plan. Many of us on here have significant arthritis as well as PMR/GCA and others have RA which can be easily confused with PMR. The presenting symptoms are similar. I mean this kindly, as I can go from zero to one hundred at times. Does your horrific pain respond to painkillers? PMR doesn’t really. Has your GP given you anything for your pain? Are you on Pred? Is this helping? That would point to PMR. Once you have more information, please come back so that others can share their experience and knowledge with you. Wishing you all the good luck. 🍀
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You are so right.....total crisis zone....exactly where I am and thanks for telling me that, genuinely, I need to just slow down and try to get a proper diagnosis
Pain killers don't help. I am not on any medication or pain relief currently as my GP doesn't want to muddy the waters when I go to see the Rheumatologist.
This is just an 'out of nowhere' thing that has totally knocked me for 6, hence the post.....just a bit bewildered with it all. Have previously had a seriously infected bursa on my left elbow which, ironically, shows not arthritis!
Anyway, like you say, and thanks again, I just need to slow down and let things run their course.
The suddenness of this pain may mean it is something acute like bursitis or a rotor cuff injury. Again patience and I think your GP is being pretty mean about pain relief. I might be tempted to go to the emergency room/ A&E. A trial of Prednisalone for 2 weeks is a diagnostic tool for PMR. If it gives you relief, the chances are it is PMR.
The fact painkillers don't work does suggest it might be PMR. As SheffieldJane says a trial of steroids for a week or so could point to PMR if the steroids work.
Can I ask, are anti inflammatory drugs such as voltarol tablets classified as painkillers? I have had a bit of joy with those, ibuprofen and naproxen less so if any relief, codeine and paracetamol have had zero effect.
I was certainly expecting the codeine to have helped and was surprised when it didn't.
If Voltaren [yes it is a NSAID -non steroidal anti inflammatory drug] helped a little and other pain killers didn’t that would tie in with piglette comment about it possibly being PMR.
Please discuss with GP on Monday and raise that- and suggest a trial of Prednisolone.
You can probably continue voltaren tablets over the weekend..but not too much - see NHS advice -
Morning Paul, sorry to read of your present worries. As SJ says time to think calmly and objectively about what is happening. It is what it is and stressing about what it maybe is not going to help anything. Plenty of people, me included on the sure with PMR and one or another variety of arthritis. Your symptoms do sound fairly PMR ish and it may be worth you trying another visit to docs and asking for a two week trial dose of Prednisolone at least 15mg which will give a good indication one way or the other. If it works you shouldn't/might not need the Rheumy, any competent GP should be able to cope with PMR. You shouldn't be left untreated in this sort of pain. If you get the time have a browse through some of the FAQ'S on the site which have lots of very interesting and helpful stuff about PMR/GCA. Hope thing get sorted soon.
Really kind of you up reply. This is a fantastic forum and I honestly feel much calmer since posting. I think that I may go back next week as advised because even though Benenden the best I can hope for is an appt in mid Dec and with the amount of sleep I'm getting it's pretty hard to think of getting through until then.
Literally can set my clock by the time I'm woken up by the pain 🤣. 3 am......on the dot.
I think 3.00am is the magic hour when things kick in and when people would think to take their steroids.
I think you need to try and get an earlier appointment if you can. If you say where you are there maybe people on here who can advise on where to go and see if they are on your private health list.
Thanks for the reply, I'm in Bexley, Kent but as part of my health cover I can only use the Benenden Hospital in Kent and I'm looking at the middle of December
Going back to my GP seems an option but he was very keen to pass the problem up and even in his letter of referral stated he didn't want to start treatment as I would be seeing the Rheumatologist.
What are the downsides to waiting? Other than the obvious pain, lack of sleep and discomfort? Does that get worse?
That is very specific health insurance! I don't think you will 'get worse' per se, just be in pain for longer. It's a shame your GP didn't want to start you on prednisolone to see what happened. That is often a marker for people that it is PMR. I don't actually have PMR, I have LVV (Large Vessel Vasculitis) so it is slightly different. But leaving you in pain seems pretty rough to me. I totally get your total shock. Once you are on a path where you know what is happening to you things will get better as you understand it more. You have absolutely found the right place in this forum though and will find, even if some of it doesn't apply to you, you will start to understand things more which helps to feel more in control and 'a little' calmer about stuff. I remember at the beginning I was all over the place in panic. I am much more resigned now and don't overreact in the same way. I could not have survived had it not been for this site. And that is not an overstatement.
" but with visible arthritis in elbow and both shoulders joints is that even possible"
What is visible is more likely to be osteoarthritis - not rheumatoid which is a totally different disorder. RA rarely appears overnight, PMR does and arthrosis of joints is often seen.
"Arthritis vs. Arthrosis. Arthritis is an inflammatory condition involving one or more joints throughout the body that causes pain, swelling and warmth in the affected areas. Arthrosis is a non-inflammatory degenerative condition associated with aging."
Not just aging - past trauma and heavy use can speed the process up.
As already said - stop panicking and stop googling now you have found us! Google tends to present the extreme upper end of possibilities - neither will kill you and neither will mean the end of normal life, even RA, There is a wide range of drugs available for RA and many people live a totally normal life - you don't end up all twisted and in a wheelchair these days. PMR is less easy in that only pred is available in the UK at present though other very effective medications are on the way. But even pred used correctly and with the right management aproaches isn't the end of the world - you don't have to give in yet ...
SImilar age to you with initially severe PMR and in a wheelchair, but a few years later was back at the top of Annapurna IV.
If diclofenac (Voltarol) helps that is probably the arthrosis. And if you have PMR too, as I do, that could well make the arthrosis pain more apparent. diclofenic rarely helps PMR.
The GP is being a bit of a woos - they normally diagnose PMR and try pred as it is also a diagnostic tool. You are on the young side which may be unsettling for him, Not that consultants are any different, He's also being a bit optimistic unless he is assuming you will use Benenden. However - Kent has always been a bit of a desert for rheumies! Most private consultants also work in the NHS - and if they are rubbish in the NHS they are likely to be rubbish in the private sector too but you are paying for the pleasure! All the named Benenden doctors are NHS doctors, working at different NHS Trusts.
I'm not sure how Benenden works for chronic conditions - most private policies have to cover you for the year you are diagnosed in - but the renewal either excludes the chronic diagnosis at renewal or they quote with an enormous premium and you are back at the NHS - if you were lucky with your consultant at Benenden I assume they would add you to their list if you wanted.
3am is early for PMR pain - where is the pain, just in your shoulders? Have you any spinal pain too? Any history of back pain?
Thank you for this. Again. Absolutely right.....Google is not my friend and we are now no longer conversing :).
I will be going through Benenden as my GP has refused an NHS referral until my RF blood results is back and I wanted to get the ball rolling. Absolutely agree re. the quality....it's no better,vi just get it through work so seems daft not to give it a go.
3am is when I've noticed I'm waking up......I think I may wake up a number of times more as I'm kind of propped up on pillows on my back. The pain is mainly shoulders. Nothing I'm the back, even the arthritic elbow is not really painful but the shoulders are conststantly and hips when I've been sitting down for a while. Doddery and painful.
Have to say, the morning stiffness I initially had where I couldn't feel I could even use my shoulders has been slightly improved since I started sleeping propped up rather than lying down.
Really grateful for the advice and tough love. I need it and feel better for it.
Your GP is a bit of a numpty - RF is pretty meaningless, it can be positive and nothing wrong and negative in seronegative RA, ACCP is far more meaningful in early RA.
Get the earliest appointment through Benenden you can - and see how you get on. I think I would aim for Andrew Pool as he does GCA and works in East Sussex NHS rather than Kent. I might be wrong - always difficult to forecast.
I don't understand why your GP is being so cagey, though at least he did countenance he possibility that you might have PMR.
I hope you don't have to wait for a whole month before your appointment: untreated PMR is not only painful and disabling, but very tiring. I was recently offered a specialist appointment about 6 weeks in advance, but then after just a few days they suddenly said 'Come tonight'. Can you ask to be put on a list for cancellations? If the secretary is aware of how much pain you are in, it might help.
Yeah, I'm very, very tired to be fair......I think that's what's hit me today plus I'm not eating really and have lost what I feel is quite a bit if weight the past few days.
Drained. Might give the GP a bell on Monday and ask about the steroids
The disadvanatage of starting pred is that the rheumy might want to see you without and after a month you will need to taper a bit. Check your weight - if you have lost much weight so quickly it might make them prioritise you as it is more a symptom of GCA or LVV than PMR.
Yeah, good idea. Tbf, with the weight, I'm simply not eating. No idea why I'm not hungry or why I have no desire to eat but I'm definitely having to force myself atm
Just occurred to me in the meantime, you may get some relief by using heat on your shoulders and get in the shower straight out of bed and start to circle your shoulders and do some stretches under the warm water. I had untreated PMR for 5 years and kept mobile by going to aquafit in the mornings - after which I could move enough to function.
Just an update before I ring my GP tomorrow .....I still have underlying pain in my shoulders, especially when moving them in a particular way.
Have noticed a stiffness and pain in my hips when bending or having sat for a while. Have been trying to eat better, plenty of hot showers which definitely help. Pain killers doing next to nothing as usual BUT I did manage to get around 5 hours sleep last night on and off we which was incredible and didn't wake up as stiff as usual.
Is that normal? Does the stiffness sometimes improve or should I be getting worse or staying the same? Who knows I suppose, just thought I'd post an update and say thanks again to everyone who has replied to my initial post.
I found mine varied over time - weather can have a massive effect and so I suspect can what you eat! Many of us find too many carbs makes things worse. I also find I am better after a good night's sleep than a night where I am awake and toss and turn.
Doctor still keen to wait for RF result and to wait until I see a specialist. Pain and stiffness a bit worse today but I suppose that could be because I slept a full 7 hours?
Weird stiffness in one finger which I hadn't noticed before and my hips seem the stiffest they've ever been even after a good walk.
All very weird.
Will waiting for a diagnosis cost me? I mean, I presume faster is better but to what extent does a few weeks delay make?
Will call Benenden today and lay it on thick obviously
Depends how you look at it I suppose. For most people not a lot of difference in the long term and a few months is common - because it often isn't recognised - but there are a few people on the forum were years waiting for a diagnosis, me included, it took 5 years and I worked out what it was before they did! And all of us have had longer and more complicated journeys. One man in the USA said his rheumy is of the opinion that when it goes on a long time unmanaged, the immune system "learns" disordered behaviour and the body can't forget the pain so it seems to be conditioned to continue.
Tenosynovitis isn't uncommon in PMR and your finger might be that. I found sleeping well back them left me worse - if I got up in the night to go to the loo I seemed to be less stiff. The movement loosens the muscles a bit. It didn't matter how long I sat at the driving wheel though - stiff after 15mins, stiff after a couple of hours! But I was better driving with the bit of movement changing gear than I was as a passenger.
Think your GP is a bit out of his depth - as I explained, RF isn't particularly helpful but if ACCP is high it increased the likelihood of RA, low it is more likely PMR. However - he's made up his mind to pass the buck!
Yes, I see. Totally get that....have been waking up hourly and so stretching etc.....a straight 7 hours obviously took its toll.
Good to know your thoughts on my finger pain, GP and later diagnosis. Really good of you to keep answering my newbie questions....I'm just still reeling a bit! 🤣🤦
Amazed how things can change so quickly....totally caught me out....wow.
RF came back negative.....symptoms persist including in a couple of fingers on the one hand and also in the hips especially after rest.
Doctor stated....as has been said on the forum that a negative RF result means nothing 🙄🤦😂 and that he would now refer me to a Rheumatologist on the NHS as, if this is RA, my health care probably won't cover much past the diagnostics.
I asked about PMR again and he said 'yes, but your pain is on the joints isn't it' I said I wasn't sure and he said, wait to see what the Rheumatologist says.....he prescribed Naproxen & Co-codamol and apologised that he couldn't do more.
Just as stressed, in pain and as fed up as ever and will chase up Benenden in the morning to see if I can get to see a specialist sooner rather than later.
Hard to say to be honest.....think that the Voltarol tablets which are Diclofenac I believe do seem to ease things a bit but I'm unsure now......ahhhh, I don't know, so weary already.
Very grateful for the help with this. Think a diagnosis is what I need.....and the treatment
Hopefully he will ask you what symptoms you have - and explain why he think it is. Just make a list of what’s gone on so you can refer to it if you need to…
You might get more replies if you raise a new post…not everyone will read this unless they have saved your post…
Always better to start a new one if you’re asking a different question- as I said unless someone has saved your post [like PMRpro and I do] people won’t get a notification. So even if it’s only a few days after the original query it may not be seen by many …whereas a new post will.
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