Disappointed or not?

I have been given my test results regarding whether I have PMR or not and, apart from my vitamin D being minutely lower than it should be, all of my symptoms have been put down to stress. I just can't believe it. I have been given some vitamin D supplements and 10% ibuprofen gel to rub on my muscles. I didn't know if I should have been disappointed or not. Well actually I am devastated because I have literally been told to get on with my life for the foreseeable future and I felt as if I was now not being believed and was making up/lying about my pain. This has caused me a great deal of stress, believe me. I was half hoping that I had a diagnosis for PMR so that I could start to get some useful and relevant help. If all this pain and total loss of energy is down to stress I would like to express my utmost respect for everyone who is quietly having to put up with the levels of pain above any that I am enduring.. My pain is excruciating so I can not imagine how you are all feeling.

78 Replies

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  • Hello jeanhayes1966

    Just a (not so, as usual..) quick response and a couple of questions from me, and I'm sure you'll get an avalanche of replies from the experts here too.

    First, who did the tests? - your GP or a Rheumatologist? Unfortunately, many GPs just aren't up to speed with, or interested in PMR symptoms or appropriate treatment regimens. I'm sure you'll hear from others on this forum about this.

    Next, what were the tests for? As I understand it (and if I'm correct), the usual tests for inflammatory markers in the blood (ESR and CRP) are not necessarily indicative of PMR (mine weren't - they contradicted each-other despite my symptoms - see below).

    What are your symptoms, exactly? If a sudden-onset combination of literally crippling stiffness, severe bi-lateral 'big' muscle pain (i.e. shoulders, neck, rib cage, thighs, buttocks) and extreme fatigue (e.g. can't even turn over in bed / get up out of a chair without Herculean effort), my money would be on PMR - these are the classic initial symptoms of PMR until or unless managed with corticosteroids or similar.

    The usual, best 'test' for PMR is an appointment with a good Rheumy and a short physical examination to evaluate your muscle strength (very simple). That, together with an accurate description of your symptoms should be pretty conclusive. Then, if the steroids (usually oral Predinisolone) 'magically' relieve most of the symptoms very quickly, Bingo - at least you know it's PMR!

    That said, I'm not a medic and don't know your wider health context so I suggest you watch and wait for responses from some of the PMR veterans here.

    Hope this helps - keep us posted.

    MB :-)

  • Thank you for your reply. My GP told me that the tests were all to determine if I had myalgia and that the results were all clear. He also tested me for all sorts of nuclear antibodies. I literally go from being ok, although I'm always exhausted to not being able to kneel stretch bend or move very quickly and when I can kneel I can not get up.I can not put my arms over my head from the side because of the extreme pain before I reach shoulder level. I wake in the night with extreme pain in my arms and neck and pins and needles in my hands. When I stand I can not feel my feet as I try to put them down and I have to limp. The backs of my thighs are tender and weak with constant pain. However my doctor says this is all caused by stress. Your reply to me has given me hope that, one day, they will be able to help me.

    Thank you so very very much.

    Jean

  • Hi Jean That sounds like a load of gibberish from your GP. Myalgia is the Greek for muscle pain which you are saying you have got. How can he say you haven't got it unless he thinks you are lying, which I would have thought is highly unlikely. Perhaps he does not speak Greek!!

  • Thank you. I am definitely not lying.An example I gave him was that I took my dog for a 5 minute walk down the road and I was pulled over by him chasing something. It took me over 20 minutes to get myself up. Apart from feeling embarrassed I was extremely worried. I have an hour or so on a good day when I can move around gingerly but apart from that my symptoms are continuous. I walk like John Wayne when ive been sitting for 10 minutes. I'm trying to laugh at the moment but it is extremely difficult. Thank you again for your support.

  • I walk like a penguin, John Wayne sounds more up market. Keep fighting.

  • I must have missed this at the time - your doctor is, at best, a poor doctor. At worst he is downright incompetent. Myalgia means muscle pain - you HAVE myalgia, that is what you are reporting. The blood tests he is doing are to rule out other causes of muscle pain - they are legion and include forms of cancer which is why they shouldn't be ignored or dismissed.

    What you describe are absolutely typical signs of polymyalgia rheumatica. He is being lazy and - like the doctor I had - putting preconceptions about "women of a certain age" into place. Did he ask if you had low mood/ were depressed? It is one of the signs of PMR. Of course you were "anxious" - who wouldn't be if they had fallen and simply couldn't get up off the ground? The most awful things pass through your mind.

    Is this a single-handed practice? Can you get another appointment with a different doctor? And take someone with you - because having a witness sees to concentrate their minds considerably. Especially if it is male - it shouldn't do but it does.

  • My GP kept saying I had a virus. In the end I went privately to a rheumatologist who diagnosed PMR within a few seconds. Do you have bilateral pain in your shoulders and/or hips? I could hardly get out of bed, could not raise my arms without excruciating pain, could not even dress easily. I shuffled around. It was all agony until I was given steroids.

  • A familiar tale piglette? - some GPs not knowing about PMR or spotting the symptoms, and / or mis-interpreting them? :-(

    To be fair on both sides, going back to my early PMR days pre formal diagnosis, I (and my GP, at first) suspected my symptoms to be 'post-viral' following what turned out to be a bout of Bacterial Pneumonia (the type you catch from someone, somewhere).

    Fortunately, my GP relented when I pressed him about the nature of my on-going crippling symptoms (the Pneumonia 100% cured), and he eventually put 2 and 2 together. Result? Suspected PMR and on to the Preds (with miraculous relief from the symptoms within a couple of hours..). An appointment with a Rheumy 12 weeks later confirmed things (as you say, within a few seconds). The rest is history...

    The moral of the story? Like it or not, with health conditions like PMR, sometimes we have to hammer hard on our GPs' doors if the symptoms are so bad, and challenge them if necessary based on the very sound knowledge we gain from forums like this.

    MB :-)

  • I don't think I could have stood the pain for twelve weeks. I was on the way to booking a one way ticket to Switzerland.

  • Well, piglette, I felt like you too, at the time. I just about managed to endure a few surreal weeks of massive pain and immobility, not to mention confusion about the cause of my symptoms.

    But, to be fair to my GP, he did pre-emptively put me on the Preds in anticipation of a positive diagnosis from the Rheumy - with instant results.

    As for a one-way ticket to Switzerland..? Mmm, I'd prefer to come back again ;-)

    MB :-)

  • Those were my symptoms exactly. The first dose of steroids got me feeling so much better, what a relief.

  • Yes, like magic :-) Then the real 'journey' starts!... :-/ Hey ho!

  • Hi, yes I have all of those problems. Your reply is very helpful to me. At least I know that I am not going mad. My pain threshold is usually very high so you can imagine how I felt when my GP said that his hands were tied cause the results spoke for themselves.

    Thank you for your kindness in replying to me.

    Jean

  • GPs have a fixation with stress - and "your age".

    What tests did they bother to do?

  • I agree with everyone here. What tests have you had done? You need a second opinion.

  • And a third, kulina..? :-)

  • Yes, if necessary. After 6 months, the 4th opinion gave me my correct diagnosis.

  • Eeny, meeny, miney, mo...

  • He supposedly tested me for everything that would point to PMR including B12. I cant really remember all of them as I was so upset when I was told there was nothing he could do. I will try to get myself motivated to get a second opinion as at the moment I don't feel that I could cope with more negativity.

  • B12 wouldn't point to PMR - except possibly as a rule-out.

    PMR is a CLINICAL diagnosis, i.e. based on the SYMPTOMS. The blood tests should be only part of the process and, as I've said, for 1 in 5 the bloods won't show anything. Is there another GP in the practice who would agree to at least try a short course of pred? If it works then there is a fair chance it is PMR. If it doesn't, back to the drawing board.

    But you need to be referred and not simply palmed off with "I can't do anything." Been there, done that and I will never do it again.

  • I always request all my test results on paper or have them emailed to me. I keep track of them all and even research them to educate myself. Also, you can take them with you at the next doctor's appointment for a second opinion. Why go through more tests if you don't have to? I realize this is upsetting but the more stupid answers I got from my first doctors the more determined it made me to find the correct diagnosis. Don't allow negativity to stop you from getting the right answers and relief from your pain. It just takes a little more time than it should, unfortunately. I also found that negativity created stress for me and that in turn created more pain. Don't allow that to happen, you are dealing with plenty so try to keep stress at bay. I used to bring my husband to my appointments, in case there was something I missed or got too upset to think straight. Good luck, I hope you feel better soon.

  • It depends where you live - the systems on opposite sides of the Atlantic are very different and it isn't always possible.

  • Good point(s) kulina - I agree on all counts.

    Sadly, it seems that some medics (and specialists in other fields) suffer from the Prima Donna syndrome and either don't listen to their patients / clients or make wrong assumptions about them / their needs.

    Yes, I'm sure it helps to put our case to, or challenge 'experts' with reliable research, facts and evidence together with a calm and reasoned request around what we want / need from them.

    Equally (and to be fair to the medics / other 'experts'), they would probably say that they can only respond to, or advise us adequately based on the quality of information we give them about our symptoms.

    Communication is a 2-way street after all - but I appreciate how, with PMR symptoms, it's so difficult to articulate in words EXACTLY how we feel! :-/

    MB :-)

  • 1 ur of let's try chiropractic,.... No results More pain... Move onto physical therapy again more pain..

    I finally went to Mayo Clinic web site and found out what was wrong.... Had to brow beat my old go to try prednisone and Walks I could lift my arms and actually roll over in bed.

    Then I found this forum and was so excited about this place I now might not respond every day but read almost all the post...

    So I fired my old Doctor Who was young and 😍 my new GP.

    I said all that to remind you they work for us. Fire them....

  • Lin, my GP sent me to an infectious disease doctor. After my fourth visit with him I got on line and researched my symptoms. Bingo - PMR fit me like a glove. Two weeks later a Rhuemy confirmed I had polymyalgia rheumatica.

    That was in 2014 and I still have PMR. When I take over 7MG of prednisone I have severe pain in my left ribs.

    Lincoln - Calif, good luck and God bless.

  • Santa Rosa Ca ......

    God bless you

  • I had the same problem. It took 2 years before I had pmr diagnosed. My doctor was worried about prescribing steroids due to the worry of legal action because of side effects. She just kept giving me pain killers. Eventually I demanded to be referred to a rhumy. once I saw him pmr was diagnosed on first visit. My blood markers have always been normal. I felt like a new person after 1 day on steroids.

    I would go to your gp and insist on a referral. Hope you get things sorted soon.

  • I'll just lend my support and back up what everyone else has said. I had to battle to get my ESR and CRP measured by my GP and even then, as the ESR was OK and only the CRP was mildly raised, they would only let me have a telephone consultation to discuss. I had to go in to the surgery and burst into tears before I finally saw a GP who took me seriously.

  • My labs are almost always normal. The new eye physician I went to see said "your labs are all normal ". As if I didn't need prednisone any longer. I said" well that shows me the pred at 15 mgs is holding it all at bay. He looked puzzled but seemed to get a new thought in his head. He is vey nice by the way and took me as emergency appt just old school prednisone thinking.

    He also told me the elevated pressure in my eye is due to pred. I wanted to tell him about the cardiac side effects, etc etc.. But am leaving it to someone with more energy. The Rhuematologist who was on phone appt with my clinic doctor ordered 60 mg of pred for one week and get labs. The eye guy says no don't take it your optic nerve is fine. It will only add to the pressure.

    So I didn't take it and have a follow up testing scheduled on 28th to see why I have such elevated pressure. One more thing.

    I am going to quite writing for today I am getting too out their.

    Oh maybe it is because my smoke detector chirped from 3am to 6:30 and my sweet Nellie kept jumping on my head saying don't you hear that.......then I went out to see how to shut it off. I need a step stool for sure. I poked it with a hanger and it shut up...go figure.....

  • Don't believe them!!!! I just went through the same thing. I've beeen struggling since November. Went on pred for a few weeks mid dec thru end Jan and came off because docs said it wasn't pmr. I had a HELL of a Feb and put myself back on pred just under three weeks ago. I kept telling them that I think I have PMR and they kept saying No because of my age (53) and normal blood work

    My latest blood for the first time showed high inflammation and finally convinced the docs I have PMR. They confirmed diagnosis with me yeterday. I should have followed my gut! They put me at risk and set me back!

    Stress def makes everything worse! I was losing my job when the PMR symptoms started..but excruciating pain is NOT stress!

  • An all too familiar story Bonnig - makes you wonder about some GPs' level of competence? :-/. That said, at the Bristol PGCA Roadshow Prof. Kirwan explained that most GP's only ever come across PMR very rarely compared to other illnesses - typically once every couple of years if I remember correctly.

  • Maybe they come across it more often but they don't recognise it. ;)

  • Good point... :-)

  • It's the most common vasculitis in over 65s - and we are supposed to be increasing in numbers so they'd better get their act together!

  • That is interesting that GPs do not come across PMR often. My GP gives the impression that every other person she sees has got it. She has only been qualified three years. That might explain how little she seems to know.

  • Good point piglette

    I can only guess that the stats for patients presenting with and / or being diagnosed with PMR will vary considerably depending on both the GP's training / experience and also their local demographics? It's a complicated equation.

    Maybe younger, more up-to-date GPs and Rheumies are more 'on the ball' with conditions like PMR? We can hope so, but that's only my guess.

  • In my GP's case I am not sure she is more up to date. She talks total rubbish sometimes, assuming that I don't know she is talking rubbish. She did actually admit that she did not know much about steroids though.

  • Mmm, you might be right piglette. It's worrying if your GP admitted to a gap in her knowledge about steroids. Even from my amateur understanding, it's a widely known treatment for all sorts of health conditions?! :- Mmmm.. maybe seek a second opinion from another more experienced GP?

  • We have five GPs and I have been round all of them. We used to have an excellent surgery then three years ago there seemed to be a mass exit, nurses, receptionists, doctors. It had a pretty bad rating from the CCG recently.

  • My doctor has amalgamated with the other in the same building. We have had the same but I definitely has the best one available at the moment. He has done tests that he has been questioned about by the partners. Ive just got to see what he does in 4 weeks' time. He is talking about pin point treatment.

  • I am fascinated to hear what pin point treatment is!

  • I think it's like acupuncture

  • Oh!!

  • I do feel for you as I went through the same for 4 months with my surgery a year ago. I felt dreadful and yes became very stressed and my anxiety was through the roof by then and my GP was suggesting it was all just stress as my bloods were normal too. I had to almost beg to be prescribed prednisone which gave the miracle result in less than a week and even though my rhumy is convinced I have PMR my surgery still stress that I am being treated for undiagnosed PMR symptoms. GP 's are very reluctant with this diagnosis you need to keep pushing and not be sent away unhappy with further anxiety.Good luck.

  • Thank you. You have given me hope.

  • I saw one of my Diagnosis active and resolved lists. It says my GCA is resolved. Yet my PMR is active. Hmmmm

  • The guidelines say over 50. And the medical literature says up to 20% of patients have normal blood markers.

    Younger patients are more likely to present atypically - I was just under 52 when mine started and my blood markers have never crept even NEAR the top of the range. ESR has never been above 7.

  • I am 50 and I get the feeling that they blame my age for everything too. It has happened all through my life. My last doctor even replied "its not your thyroid . . . don't we all feel like that" when I tried to explain how I felt. You can imagine how I felt. I went outside and broke down

  • What an odd thing for a doctor to say. It's not about "everyone", it's about you, or me, the individual patient. I hope your current doctor has more sense.

  • Hear, hear HeronNS.

  • Thank you

  • Ohh, shocking Jean - and at only 50? Where's the empathy / 'bedside manner' here? Some GPs should know better - it's truly awful :-(

  • Thank you. I thought I was being stupid

  • A bad, very bad attitude from any GP who has any degree of empathy with their patients ... :-(

  • Thank you

  • Basic mistake! You shouldn't have left the room - but still broken down. It seems to be the only thing some doctors understand.

  • Yes, seems that we have to lay it on thick with some GPs who can't (or don't want to?) read their patients' more subtle emotional signals as well as their surface symptoms. I've heard somewhere that Relationship / Behavioural Psychology isn't part of a GP's training (as it should be). It seems to be a roll of the dice in terms of whether you get the Bedside Manner or not (and conversely,whether you want it or not!).

    I think a mistake we can make is to assume that a GP or Rheumy has strong Empathy skills - because of their profession. But of course, they have differing Personality Types (like us), and some 'Types' can tune-in better to their patients' emotions than others... :-/

    That said, some GP's who are less empathic are nonetheless very good at their job and might argue that they are medics first, counsellors second. Mine is one.. despite the odd wrangles I sometimes have with him.

    Reminds me of when I last went to see my bank manager to borrow some money. I asked him: "How do I stand for a loan?" He replied: "Mr Benjamin, with your track record, you don't stand, you KNEEL". ;-)

    MB :-)

  • With palms pressed tightly together in supplication...

  • .. and heart-rending cover story about financially supporting a sick relative in need - when I'd just ordered my new Mercedes! (not really..) :-D

  • Sick relative? You in your parallel universe?????

  • Ssshh, he (the BM) doesn't know about that ;-)

  • He's probably got an alter ego too...

  • Yes, he's an evangelical preacher at weekends (boom boom!) :-D

  • Is there no end...

  • Nope! I blame you lot :-D

  • Nothing to do with me - it was very quiet until you arrived!

  • Maybe it's fibromyalgia?

  • He says not but I am looking at getting a second opinion. Thank you.

  • Getting the right diagnoses is so hard, My symptoms of fatigue and muscle pains in my thighs and back went on for 7 years during my late 50s.If I sat in one position for any period I was so stiff when I got up I had to will my self to straighten up and move. It was given injections, physio, blood tests but no diagnosis. Finally my condition got to the point where I was walking with a stick and crawling up stairs. It was not until the pain spread to my shoulders that my GPS put me on a 15 mg dose of steroids with the immortal words if it is PMR it will have an immediate effect, come back to see me in a weeks time.

    It was truly life changing, in 24 hours I was moving freely and could walk up the stairs. That was 4 and a half years ago since then I've have been slowly reducing with the help of being put in charge of my own medication with 2.5mg, 1 mg and 5 mg tablets allowing me to slowly drop .5 at a time.

    I am now on 5.5 and will drop to 5 next week. I do have the odd bad spell and find the winter months particularly difficult. I have had to work hard to keep from putting on weight, but life is good.

    So if your GP keeps putting you off keep going back with demands for a steroid trial, it could be the magic you need.

  • Snap - absolute ditto though it was a "mere" 5+ years and I didn't get to the using a stick stage. 15mg pred - 6 hours later I was back to normal

  • Amazing how some here (like you PMRpro) endured un-treated PMR symptoms for so long without losing the will.. etc. I had them for a mere few months and that was bad enough. And yes, the preds have a miraculous effect within hours for many of us. But that's when the Journey really starts! As for Normal - what's that?!

  • It wasn't out of choice I assure you!

  • A familiar story weightshifter, too familiar unfortunately.

  • Thank you so very much for your comments. I have found them very helpful indeed.

  • I too have trouble with sitting up and moving after I have been in one position. My pain is also across my shoulders and down to my finger tips. I have no sense of feeling in my hands when I wake up if, indeed, I manage to get any sleep and cannot make a fist in any shape or form. I have to push myself up using my elbows and when I eventually get out of bed I can hardly walk. If twist slightly to one side or the other the pain in my arm muscles is horrendous and it feels like I am twisting my muscles and then they click. I am going back to my GP on 11 April so hopefully I can make some progress.

  • My first visit to the doc with symptoms on my 52nd birthday I was asked what I thought the matter was!!! I had a phone call to say my bloods showed nothing and to keep taking paracetamol (which did no good) I returned again to see another doctor in the same practice who diagnosed me very quickly, prescribed pred and said if her diagnosis was correct I would feel like a new person within 24 hours - she wa a miracle worker!! Finding it hard to live with - but at least I know what it is now,

  • Hi Mrschudz

    The moral of the story? If in doubt about your GP's expertise and / or attitude, press for a second opinion. I'm glad you got a result - eventually. Your second GP is obviously on the ball - keep close to her!

    As you say, once we know what's going-on with our health conditions, they are easier to deal with.

    MB :-)

  • If the paracetamol had been doing any good - why did he think you went to ask his advice? What a twit!

    My mistake was to not tour the rest of the GPS - though the PMR expert was probably on maty leave!

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