Can I ask, has anyone else had trouble getting a diagnosis? I started suffering from terrible pain and stiffness in my neck, shoulders, upper back, hips, buttocks, thighs and upper arms in March. I am a normally fit 61 year old female, and couldn’t understand what was happening to me. I put up with it until June when the pain was causing headaches as well, but due to lockdown I had to have a phone call with my doctor. I didn’t really feel she was listening, and she tried to put it down to lack of exercise, but did refer me to the physio at the surgery the following week. Again we had a phone call and he arranged for me to have blood tests. I was told that someone would then contract me when they knew what was wrong. The pain is now terrible, I cannot turn over in bed or move my arms and legs in the morning. My husband has to get me out of bed, and I am in pain all day. From what I have read (though I normally try and avoid diagnosing myself!) I feel certain I have PMR, but do not know whether this delay in diagnosis is normal. I am feeling very down as I cannot imagine living with this pain . Any advice would be gratefully received.
Waiting for a diagnosis : Can I ask, has anyone... - PMRGCAuk
Waiting for a diagnosis
It took me over 5 years to get a diagnosis - and even then I had done the research myself and took the suggestion to the GP who STILL wouldn't try pred! The rheumy I saw then gave me pred but didn't agree that the 6 hour miracle that happened with 15mg pred was suggestive of PMR and wanted it to be anything but PMR. I got "your age" (51 at the time) and a lot of other guff. I also didn't have raised blood markers which applies for 20% of patients - I might let them off at first sight ...
I'd like to think that the charity has improved the situation but if it has, there are still doctors who slipped through the net.
Thank you for your reply. I’m sorry you had to suffer for 5 years... I am only heading towards 5 months and it’s frequently unbearable! I am always reluctant to be that person who tells the doctor what’s wrong with them, but get the impression PMR sufferers need to be somewhat pushy. It’s particularly difficult at the moment with lockdown, and not actually getting to see anyone..... I’m not sure how they can diagnose without seeing patients.
They CAN see patients - if they want to. But the state you sound to be in, a visit to the ED wouldn't be unreasonable if your GP refuses to see you.
I live in Italy and in the last couple of days I have seen our own GP f2f on a house visit and the GP in the next village so I can get a new driving licence (medical checks done every 5 years). UK GPs are taking the proverbial ...
Took 18months for my GCA to be diagnosed - but the one consolation (if there was one!) is that I didn’t have a clue either.
Let’s hope the blood tests prove you have a problem - and so can get some treatment.
Has the possibilty of PMR been mentioned by either you or your GP? You could say you suspect it as you know someoone ho has it and ask for a 1 week trial of steroids to see if they have any effect. There'd be no harm done if you don't respond to them. It took me nearly a year and about 6 GP visits to get the diagnosis which was by response to steroids. Dig your heels in, it's not right to have to be in such pain.
It took 2 years for me to get a formal diagnosis. Like you, I waited for it to go away first, so went from March to August before asking for a referral to a Rheumy. The first one decided it was my posture (!) The second one didn't know what I had but could see I was a mess so put me on Pred. anyway. He still didn't think I had PMR. The third one was worried I had something worse so ordered a PET scan which actually showed inflammation in hips and shoulders- classic!! The moral of this tale is don't give up- you are probably right and, if it is PMR it will just keep getting worse! Be persistent and don't take no for an answer!
Offer them this to read:
rcpe.ac.uk/sites/default/fi...
and ask if you can try a week of pred as described there. Though 15mg is now thought to be not necessarily enough:
rheumatology.org/Portals/0/...
Thank you SO much, everyone, for taking the trouble to get back to me! The physio I spoke to initially mentioned PMR so he obviously thought it might be. I will take all your advice... It's so nice to communicate with fellow sufferers who understand. I don't think non-sufferers get it, and I feel like I'm making a fuss! 🙁😢
Mention to your doctor that the physio suggested PM R as well, ....and say the help you need from your husband.....
Keep us posted...good luck....
If you have PMR then you are just a few months behind me. It’s not easy getting diagnosis at the moment. I felt I had to jump through a few metaphorical hoops (various blood tests but not the inflammation one, X-ray, painkillers, chiropractor and physio).
I then had a phone conversation with the gp when I basically said I could hardly move despite doing everything I’d been told. I’d done what the physio said etc etc. GP then said I’d better go in. He examined me and I stressed it was getting worse and he did bloods saying he suspected PMR. And the rest is history. Well it isn’t yet but I’ve just started tapering.
So yes insist something isn’t right. Don’t be strong and stoic. Good luck and let us know how you get on.
Yes, I had all sorts of tests before a clever young doctor spotted PMR and tried me with 20 mgs of Prednisalone daily. I was completely out of pain and stiffness in 2 days. Your symptoms sound horribly familiar and your doctor simply must take you seriously. Blood tests may show high levels of inflammation but for 20% of patients they don’t. However, a really positive response to Prednisalone is a pretty sure sign.
It also took me 2 years for a diagnosis. I had been going to physio for knee and shoulder issues and the therapist said she thought something much more sinister was going on with my body as it became more difficult for me to move even after therapy. She referred me back to an orthopedist who specialized in long term pain management and after a series of MRIs and xrays on my back, hips, neck, shoulder and knee asked if she could try a trick and put me on prednisone. I will forever be grateful for her connecting the dots. Within 3 days I was feeling alive again and hopeful with a good referral to a Rheumatologist she knew. Now 4 years into this, 1 year off pred and just back from doctors today ironically to find out its back. The symptoms were not completely the same this time and I wonder if that’s been true for others? My bloodwork too has been inconsistent although SED rate has been hovering around 44 which is high for me. Now that I’m back on prednisone I’m going to be much smarter about my nutrition, diet and strength building. Boy did my muscles atrophy the first go around which made the recovery harder because without muscle, movement became challenging. I was so tired and I lost all my core strength. My body looks and feels completely different and you have to learn to love it. As others have offered, know you’re limitations, be kind to yourself and have patience, including with doctors. And if you can, find one who’s willing to go on this journey with you - because it’s a certainly a journey. One last tip - keep a journal to track whats going on. This has been so helpful for me and my doctor!
If it were me I would ask/demand my doctor for a diagnostic dose of 15mg pred for a week. If, like me, you have a magical cure within 2/3 days it’s PMG!! If not back to the drawing board. Good luck with it all - don’t delay.
Hi I sympathize I had exactly the same issues from my experience my GP didn't actually diagnose PMR he best guessed it and prescribed 15mg of predisilone which had an immediate effect after 5weeks I am now pain free and tapering I felt so bad I was on the Dignitas Web site. If you can't raise your arms above your head and push them backwards and your quads are constantly painful/stiff tell him and demand predisolone I guess your assumption is correct good luck
PS Keep in mind 20% of people do not get inflammation markers in their blood tests. So if your tests come back negative it doesn’t mean you haven’t got PMR.
My surgery sent me to physio who diagnosed lower back pain - went to private physio who wrote to gp I had changed to and got immediate diagnosis and help - can you get a second opinion?
I agree with Loyd. After 9 months of pain and stiffness a new and newly qualified GP put me on Pred saying that if it works, you probably have PMR and if it doesn't, you don't and you can come off after a week without any problems. It worked like a miracle!
Hi there, so sorry it’s taking so long to get diagnosed. You sure sound like you have PMR as very similar to myself. I was 63, fit and active, loved jogging etc. I started with a stiff neck/shoulder, pain in back of head up into ear! GP Treat me for neuralgia, also saw a physio. Continued to feel dreadful, fever, sweats, then like you had to get help to get out of bed, struggled to get off toilet, out of car etc. Went back to GP and took hubby as felt I was getting nowhere. My CRP and ESR were very high but because I wasn’t what GP described as ‘atypical’ she was unsure. I was given 20mg prednisolone to see if it worked and then she said ‘we’d have the answer’ It did work in about 48 or so hours, it was amazing to be able to turn over in bed (simple things). Unfortunately 3 weeks later I also was diagnosed with GCA for which treatment is the same but much higher doses of prednisolone. My advice to you would be to get to that GP and stress how bad you are and that you and physio believe it is PMR. You’ve suffered enough! Hope you get some answers soon x
PS you will get better, it’s just a slow process along the way, but stay on this forum as it’s an absolute lifeline!
If what you describe isn't typical for PMR I'd love to hear what that GP thinks is!!
You and me both! We got there in the end though x
Agree with everything already said above. Tou really have to be your own advocate and do not let them fob you off. If your pain is that extreme it needs resolving.
I had to have what I can describe as a toddler tantrum in the doctors after 4 months of painkillers that didnt help and a physio referral that got refused before they took note and repeated the already raised inflammation markers. Satrted steroids the next day and was so much better in 7 hours.
Best of luck.
Once the go got my blood test results things moved quite quickly fir me, was referred to a rapid diagnosis clinic and a rheumatologist. I say quite quickly but those three weeks were agony, not helped by me really not wanting to take the very powerful painkillers I was offered. Keep ringing your gp, and I hope things get moving for you
You are all wonderfully inspirational and I can't thank you enough for your wonderful advice. I had begun to think I was going a bit mad and your understanding has given me strength! I have just spoken to my GP after 5 weeks of radio silence, and apparently I have been referred to a rheumatologist because of high inflammatory markers, but the bad news is that I might not get an appointment until the end of September 🙁😢 Meanwhile the doctor has prescribed strong anti inflammatories and wants me to report back in a week if they don't help. If they don't, I can see me having a toddler tantrum as well as I cannot put up with this for another 2 months.... 😬 Does anyone have any dietary or exercise advice?? I currently find even walking painful most days, but feel I should be doing something. I have gone from being a fit runner, and gym bunny to being an old lady who can't even get out of bed without help!!!
Do what you can - don't do what you can't. Quite why high inflammatory markers scares them is a mystery. If he is that worried he should be thinking GCA and making an fast track/emergency referral. But there we are!!
Do you happen to know HOW high the ESR and CRP are?
I'm afraid I don't.... the doctor just mentioned it in passing and anyway, in my ignorance I don't know what the numbers mean so stupidly didn't ask. I'm sure I'll soon learn all about it, but I was too focused on making my symptoms VERY clear in a brief phone call. For reference, what is a high reading? So annoying not actually having face to face consultations. I will phone reception for the results. Time to educate myself!!
No real answer to that. The normal range for ESR (the rate at which red blood cells sink the bottom of a vertical tube) is taken as 1-20, some older doctors accept 30 for older patients. That is the range for 95% of a large population, 10,000 or so, so each person has their own personal normal. Mine is 4, so a value of 20 is pretty high for me. But someone else may have a personal normal of 19 - 20 is fine. It really does help to ask and know and keep a record for later.
I cut out all tea, coffee and alcohol- I lost the taste for these tbh, added any anti-inflammatory foods / drinks I could think of : blueberries, cherry juice, green tea, tried aloe juice but even the peachy one is truly disgusting, tried Bowen therapy. Initially I could do very little except sleep but by October (onset July, started steroids in September) I was back doing yoga and seeing osteopath once a week. It was lovely to get going again but I still have a nap most days. Best advice I received when I was desperately sad at how badly my first return session to Pilates went was to listen to my body and take each day as it comes, it is a long haul. Best wishes
Very useful..... Thank you. I must admit I am constantly tired. I have tried yoga, and like you, wanted to cry at my stiffness and pain. I will certainly focus on anti-inflammatory food and drink. Great advice!
Discuss it with the teacher - I managed Pilates and Iyengha yoga with untreated PMR. That was what kept me upright for 5 years! But it had to be adapted for me and sometimes I couldn't do a whole class. I went from a fairly high level of Pilates back to beginner at first.
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