Since getting back from Cyprus where I saw a Rheumatologist but wasn't there long enough to get to the bottom of my symptoms, I've seen my GP who was appalled I'd been prescribed Pred (too young and no inflammation markers - actually I'm 56 and in Cyprus my ESR and CRP were considered raised though clearly they have higher hurdles here).
He prescribed me one small pkt of Pred and told me to taper down and come off them. The prescription charge was more than twice what I paid for twice as many pills in Cyprus.
He said that in his experience, a lot of weird symptoms like mine do just go eventually, his implication being that I should just do the best I can with NSAIDs and paracetamol and suck it up.
He will retain my referral to rheumatology as a fall back in case things don't get better between now Sep 15 when the referral was requested and spring when they expect I might get an appointment. I've had the pain since March but didn't go to the doctor till July as I'm used to sports/lifting injuries taking a month or two to clear up by themselves.
The amusing thing is, a tennis friend of mine's husband has had problems for a while and has paid to see consultants and he has frozen shoulder which gives him the neck pain v similar to what I have. Looking on the internet I see that frozen shoulder - due to the way the other bits of the body compensate if a painful part is instinctively doing less - can lead to other weird aches and pains. And that it can take several years to recover.
Symptoms very similar to PMR in some cases. I'm surprised that while trying to insist that I don't have PMR, not a single medic I've seen has even suggested I might have two frozen shoulders. Tim Henman's father (who lives in our village) suggested frozen shoulder the minute I mentioned my symptoms but till my friend described her husband's symptoms the other day, I hadn't taken that possibility seriously as the usual stuff on the net about frozen shoulder didn't sound like what I was experiencing. Any thoughts/pearls of wisdom anyone? I'm having to play tennis matches stoked up with NSAIDs right now as our team is tiny and there aren't any others able to stand in for me. My pain is much worse for several days after playing matches.
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Creas
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Presume this is same GP that you have seen previously - if so of course he’s going to think it’s not PMR.
He may be correct, but he’s wrong on age - and of course your inflammation markers are going to be within ‘normal‘ ranges if you’ve been taking Pred.
I would be keeping an open mind until such time as you see Rheumy [maybe privately if NHS wait is too long]. My GP diagnosed frozen shoulder[s], and told me it might take a long time to right itself - and over a period of a year gave me 3 cortisol injections [none of which were particularly successful] and sent me to a physio -again unhelpful.
Despite other symptoms, especially fatigue and later on, headaches, she continued to think so until 18 months later I was diagnosed with GCA in A&E after having lost sight in right eye.
Mine might be an extreme story, but GP’s can go off on the wrong track….
Is the pain only in your shoulders and neck? What about your hip girdle? And is it primarily pain, stiffness, or both?
I was reluctantly diagnosed with PMR over a year ago, although my inflammatory markers were never out of the range of “normal” for the lab guidelines, but I wish I had known what MY “normal” was before I got PMR symptoms and was first tested. I suspect my normal were very very low digits, and when I went into the upper normal range with PMR, that was actually high for me. Just before being diagnosed with GCA in October my sed rate was STILL “normal” (though higher!) and my CRP finally crept out of the laboratory normal range. But not by very much. However, I had a positive temporal artery biopsy! I have recounted all of this previously, but I mention it again here to make the point that some of us seem to have very low, beginning, “inflammatory markers” for some reason, even though we clearly have inflammation in our bodies! (My temporal artery biopsy said “severe.”)
I would also want to mention that months after being diagnosed with PMR (I had extreme bilateral stiffness in the neck, shoulders, and hip girdle; for me pain was milder than the stiffness) I started noticing constriction in my left shoulder. I had some testing… I think it was an x-ray and an MRI. They showed mild osteoarthritis and bursitis. Physical therapy helped that. My point here is that bursitis and PMR are not necessarily an “either-or.” PMR affects the bursae and can therefore obviously contribute to bursitis.
I don’t know if you have PMR but I certainly hope you get more caring medical help that can assist you in figuring out what’s going on and what to do about it!
I also suspect my usual level of inflammatory markers may well have been lower than the UK norm (I don't generally eat flour, sugar and other processed stuff - lots of veg, meat and dairy) and wish I'd had it benchmarked. I have mostly neck and both shoulders in pain and they don't respond to NSAIDS. I also have some hip pain and sometimes excruciating pain which thankfully does respond to Naproxen. I've had a lot of sciatica like pains in my legs, alternating, as well as more general aching and pain in the hip area eg. when getting in and out of the car. Yes, pain AND stiffness. Pain mostly.
Hi there Creas, I have PMR/GCA/LVV and a couple of years ago I had a frozen shoulder. Rheumy gave me a couple of cortisone injections, each of which only worked for a couple of weeks. She then sent me for an MRI which was followed up with a cortisone injection given under ultrasound to get the precise spot. I followed up with physiotherapy, a specific shoulder physio, and it came good. It is possible to fix but the correct diagnosis is crucial. All the best.
Well I'm in Australia, we have a system called Medicare for procedures and PDS for drugs. The former covered the MRI, but you must be referred by a specialist. Ultrasound was covered also, but I paid for the physio because I didn't opt for physiotherapy in the options component of my private health cover, but she was worth it.
PMR is often misdiagnosed as frozen shoulder - and it is when pred injections are given and result in a lot of other more general symptoms improving dramatically that PMR comes onto the screen. I can accept a single frozen shoulder resulting in PMR being missed - but bilateral ones deserve a far more considered view than your GP is taking.
Your GP is totally incorrect - the AVERAGE age at diagnosis over 70 but to get that as an average when a very large number of over 70s and 80s are diagnosed does require there be a lot younger than that as well! Obviously he needed some numeracy education ...
I do realise your desire is not to let down your mates but really, you'd better hope it IS PMR because playing despite the pain may result in permanent shoulder injury and not being able to play at all.
i've had such awful extra pain for days now after playing tennis (even just 1.5 hours, not matches) that I'm now on the verge of telling the team I can't play any more.
I really do think you need to bite the bullet. Pain is there as a warning - and professionals who ignore pain to continue playing end up with some awful problems later in life.
Hi, I went privately to a therapist for my frozen shoulder, I could not even use my arm for anything, total agony, in tears everyday, doctor advised to go private too. Made an appointment, never gone private before at a local Therapy Station, a week later was introduced to a lovely, young man, who i now call my Mr Magic Hands and he performed the "Emmet Technique", very gentle most of the time, I had never heard of it. Doctor said up to 3 years for a frozen shoulder to heal, he had me as good as new in 5 , 3/4 hourly sessions! it was like a miracle to me, that was a year ago, I get an odd twinge now but it is still really good, give it a try x
I had frozen shoulder many years ago. I waited too long and ended up with not being able to move my arm but a few inches. I could not put my hand in my pocket, etc. I ended up having to have physical therapy. I went for a year before it finally cleared up. Very expensive. I started 3 days a week but by the end I was going every other week. It took a long time to get back to normal. I did not take any drugs at all during this process, just had the physical therapy. My pain was centered in my shoulder. Don't wait like I did until it gets so bad that your arm can't function. I kept thinking it would go away and that I had just pulled a muscle.
I am sure that others will be along with more authority than me, but I would say that if it is PMR, and depending on dose, the Prednisolone would take pretty much all of the stiffness and pain away within a few days. If it didn't then you can pretty much agree that it is not PMR. If it did then probably it is PMR even if your inflammatory markers aren't sky-high.
If it is PMR then I think you may be better not continue playing tennis, for now at least. I played a running sport (korfball) but even on higher doses of Pred when I could still walk and run, but found that my leg muscles seized up very easily to the point of spasm. For the sake of your sports life, better hope it is not PMR which, whilst it goes away it takes its time and when you get to lower doses of Pred the effect on muscles is a bit tricker to manage. If you can find a good osteopath or physio, please get someone who can help you to maintain activity and muscle mass. I left it too late as I thought I was doing fine, tapering 1mg per month approx and contracted Covid in April 2020 which sent everything haywire. I joined this forum after that and have learned a lot since then that I wish I had known in the early days. Good luck!
A Very accurate assessment you’ve given here Marion, as I note all your suggestions coincide with my own very long term PMR journey (28 years on pred now, & as my GP advised years ago I’m on just a variable low maintenance dose of 3.5mg - 1mg, that I regulate myself accordingly). This keeps my inflammation controlled & bearable.
I accept my PMR is here to stay, and the little White pill is the only drug I take (I reject all normal pain killers too!) I tell my GP amusingly; Pred’s the ‘One I Love to Hate!’
I have no GCA but a recent full blood count etc showed normal ESR & CRP ( As usual!).
In Para 1 you illustrate how a swift response to Pred indicates it’s likely PMR.
Then you suggest to our friend, take it easy & give deep thought & take great care on continuing any frisky Sporting activities.
Too Right
Very wise words that I endorse too, I’m sure Creas is comforted greatly by your message.
Good luck to all PMR’ers out there, I thank all contributors for their kindness and care that we all gain strength from, here on this brill forum.
Sorry to hear that; hope it comes good for you in the end. I don't think I kept up a high enough dose of Pred for long enough to see whether all the pains would go with it. I still have a supply of pills so could give it a go. But it's a shame not to get the doctor's advice. I'm actually wondering these days why we even have GPs. Better off using the internet much of the time!
Yes, I don't think there is actually one in Norwich, and I haven't been to one further afield myself but I am happy for you to DM me if you think I can help at all. I do know a few people in the city who have, or have had, PMR, everyone with a different tale to tell
Why don't you contact the charity - Fran_Benson can tell you who to speak to, They will help you set something up. Doesn't have to be fancy to start with - just a few people meeting for coffee gives a basis.
PMRpro The trouble is I am a serial organiser and already run too many groups for me to keep track of. I spend my life emailing people and setting up meetings for various things but I will gove it some thought. I also go to Holt occasionally so maybe a small group of us Norwich bods could take a trip up there
If you get together once or twice, maybe someone else would take over that aspect.
Hi...before being diagnosed with PMR I had aches and pains all over but there were a couple of real "hot spots". One of these was my shoulder as I believe it is with many people. I went to see my GP and she was quite alarmed at what she saw. It was a "winged scapula" which I think is caused by a weakness in the muscle (serratus anterior) which holds the shoulder blade tight against the ribs. I hadn't seen it until she pointed it out to me. My shoulder blade sticks out at a weird angle and it can feel a lot like a frozen shoulder. Maybe you could get someone to have a look...I don't know what to do about it though, none of my healthcare people seem to be very interested...!
Hi...thanks. Untreated, what are the other treatment options and what are the nasties to avoid? Physio is the only treatment that I can think of. Perhaps you could help me with this... Before I had my PMR diagnosis I was having physio for a badly swollen hand and one finger in particular which had very restricted range of movement. The physiotherapy only seemed to make things worse so I stopped. I now realise that, by trying to exercise joints that were already inflamed by PMR, I was only adding to the inflammation. Now that the inflammation has gone I am able to benefit from the exercises. Is this a correct interpretation of the effect of exercise on PMR inflamed tissue? My CRP is now down to 4 so I am hoping that physiotherapy on the muscles that have caused my winged scapula will not make things worse as happened to my finger...what do you think?
In PMR it is not your joints that are inflamed, it is the soft tissues AROUND the joints and that is not quite the same thing. Physio per se in the form of repetitive muscle strengthening exercises must be employed with care - despite there being little or no inflammation in the muscles, they are still compromised by the autoimmune component of PMR and it is all too easy to cause DOMS (delayed onset muscle soreness) by overdoing it. It is crucial to find a physiotherapist who understands the limitations experienced by the PMR patient. We aren't being lazy when we say we can't manage something - it is the disease and we can't afford to make things worse.
It is a real conundrum as I am pretty sure I need to strengthen my core muscles and back and legs but everything I do seems to be one step forward two steps back but at least making some progress is worthwhile as I just don't see myself as a an overweight, staggering old woman although I am pretty sure that's how other people see me!
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