1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

Waiting for a diagnosis

Posted , 7 users are following.

kadge
kadge

Hi all,

At present I am waiting for a diagnosis of some description, had my bloods done today but they only tested immunology, rheumatoid factor and fbc.

Symptoms are severe pain in both shoulders, neck, arms and lower back with aches in both legs and hands and also stiffness. No swelling at all. Doctor said it could be spread of osteoarthritis but she didn't think it was and suggested PMR which I googled and all my symptoms fit except my age as I have just turned 46. Am in so much pain I could cry and just want a diagnosis and some pain relief. Pushing a buggy is agony, even walking wears me out and makes me ache so much I don't think anyone understands unless they are in constant pain

Thanks for reading.

0 likes, 14 replies

14 Replies

  • EileenH
    EileenH kadge

    Posted

    I hope your GP also asked for ESR and CRP to be done but I'm sure she did if she suspects PMR despite your age. Even if they were normal it wouldn't rule out PMR as younger patients tend to be what they call "atypical" and that would include normal blood tests - they happen in about 1 in 5 patients with PMR.

    The guidelines and articles tend to say "Consider PMR in patients with the appropriate symptoms who are over 50". That doesn't mean that people under 50 can't develop it - though to listen to some of the experts you would think so! Some of them also say "there is no pain in PMR, only stiffness" - which only shows they have never listened to their patients or had it themselves!

    It is becoming quite clear that people are experiencing the symptoms of PMR at younger ages - and although that may have been unusual in the past, I believe it is because patients who are younger tend to be told they have fibromyalgia and the real diagnosis is missed. What you describe doesn't sound like OA - although I was told that was what I had. That was 10 years ago when the PMR first started - no evidence of it at all now.

    You sound to have a sensible GP though and I hope she decides to try you on a moderate dose of pred to see if it works even if the blood tests are non-conclusive. Of course, they might suggest something else in which case she'll try another approach. 

    Where do you live? Maybe we can recommend a good rheumatologist if you need one. Do let us know how you get on.

  • kay56703
    kay56703 kadge

    Posted

    Hello Kadge

    I know how you feel!!!!

    I was diagnosed in jan 2014 but was suffering long before that, but put it down to age LoL. Sounds like you have classic symptoms of PMR (bilateral pain in major muscle groups)but I am no expert. There are a few on this forum that are far more knowledgeable. Age is not a factor as there are some on this forum that are under 50 years, so don't take 'over 60' as gospel. I am 57 and I am sure that others will come forward with their own experieinces. I think your gp is heading in the right direction and if he/she suggests steroid treatment don't be put off. Usual prescription is for Predisalone at about 15-20mg which should do the trick. Then follow this forum for more advice. You may even need to educate your gp as they will want you to decrease to quickly at time but you need to listen to your body and the wise souls here.

    You are in good hands now so stay in touch with this forum. It has been a godsend for me.

     

  • erika59785
    erika59785 kadge

    Posted

    Hello Kadge,

    Yes.....so important......to reduce SLOWLY from 15-20 mg.......I was feeling fine, almost pain free and  thought to reduce from 20 to 17 1/2.  I should have remained there the FULL 6 WEEKS on 20, and then reduce by 1 mg for another 4-6 weeks.  I was not wise enough to do this, and I have a right hip pain and more left shoulder pain (tendonitis) since yesterday although I am receiving Physical Therapy for it.  It has not helped much because the inflammation is still there.

    Even my therapist told me.

    I am back to Yo-yo which is not good.  I live and learn.

    Thought to share my experience.

    Erika

  • pam41628
    pam41628 kadge

    Posted

    Ouch!

    If it is polymyalgia rheumatica I encourage you to research the problems with taking prednisone (the drug most Dr.s recommend) It will alleviate the symproms but do nothing about dealing  the cause. and look into the importance of diet (lots of greens, organic foods, turmeric, Udo's3-6-9 oil, no wheat, alcohol, sugar, caffeine) in helping you to heal. I used to like my glass of wine in the evening and am hoping to be able to enjoy it again. I haven't been able to wean myself off of coffee totally - but I do limit it. It will take time....but hopefully in the end, bring you back to health.

  • liz23617
    liz23617 kadge

    Posted

    Hi i am fairly new to this site but would like to make a comment Re; your pain, it sounds to me that you may have fibromyalgia as your pain is in a lot of areas. Apparently you could have PMR and fibromyalgia which could be the same in my case. I do not see my GP until next thursday following blood tests looking at inflammation hence possible PMR, ihave been diagnosed for fibro for 10 years now and there is no cure as yet but there are medications hrough your dr which can help the pain. Ialso have osteoarthritis in my knees and am wondering if the pain in my kneck and back could also be this again something else to ask my GP. All of these ailments unfortunately overlap and is hard to distinguish which pain is what.

    These are only a few suggestions i am no medical person but do have a lot of pain in a lot of places. By the way i am 58 so have had fibro at least since my 40s, age doesnt always mean that you do or do not have a certain problem. good luck do some homework and then see your dr and ask if it could any of these things.

    • EileenH
      EileenH liz23617

      Posted

      If I understand you correctly you are not yet taking pred? It will be interesting to hear what effect pred has on your pain if you are offered it. Maybe it isn't fibro. Maybe it is PMR, or PMRplus.

      There are a lot of overlaps between the descriptions of fibro and PMR - when I was researching what it was I might have it was a toss-up between the two. The rheumy I saw wasn't convinced it was PMR - he wanted it to be anything but - but he did give me 6 weeks of pred to help me through a trip to the USA. Thinking about it I don't see why he did, but he did and I had a miraculous response in 6 hours! Not 100% pain-free by any means but able to move and walk normally, above all to walk up and down stairs normally! When I next saw him he wasn't interested in the pred effect. As far as he was concerned that was immaterial. 

      There are a few people on the forums with both and they see a clear difference between the PMR pain that is controlled by pred, it doesn't touch the fibro pain.

    • liz23617
      liz23617 EileenH

      Posted

      Hi eileen yes i am on pred a the moment and have been for a few weeks but only on 5mg whlle waiting for blood results and then an appt with the GP which is next thursday. i could not stand the pain while waiting so upped the pred myself to 15mg the last 3 days to see what happens and some of the pain has eased but my knees, neck,and lower back are really painful, i know i have osteoarthritis in my knees but not sure about kneck and back. I have to see the consultant about my knees also on thursday so will ask his opinion.
    • EileenH
      EileenH liz23617

      Posted

      Well, 5mg was a bit of a waste of time, it won't do anything in PMR! If you want to try in the way the Bristol rheumatology group recommended you trial 15mg/day for a week, possibly 20mg. In PMR there should be a good response within that week which then reverses in the same time scale when the pred is stopped. If there is bursitis in hips and shoulders that will take longer to resolve, often months if it is long standing as yours is. 
  • kadge
    kadge

    Posted

    Thank you everyone for your answers it's so nice to talk to people that understand.

    In response to questions and advice

    I live in leicester, I have a fairly healthy diet as been losing weight for 3 years or more. Not prescribed anything except painkillers which have no effect on my pain at all. If my blood tests come back normal I shall be requesting a trial of pred to see what if any effect it has. Something has to help me pain wise. The shoulder arm and neck and upper back pain are all new in the last 5 weeks or so the lower back pain I have had for 10 years and diagnosed as spondylitis about 18 months ago but have never had X-rays scans or anything so it may not even be that.

    Feel in a deep depression and that I sm always whinging and I don't want to be

    • EileenH
      EileenH kadge

      Posted

      That's interesting too - the rheumy I saw was desperate mine would be spondylitis but that theory was hit on the head when he sent me for x-rays and other tests. I too had had low back pain for several years and managed it with the help of an osteopath and a Bowen therapist plus Pilates.

      A few years ago I had a car accident when someone drove out in front of me in southern Germany. There it is automatic for you to be told to go for a check for whiplash - which my local doctor confirmed and referred me to a private orthopod. After he had dealt to his satisfaction with the whiplash I asked him about the low back pain - which he insisted was wear and tear, I'd have to live with it. I couldn't walk for 20 min without severe low back pain.

      A year or so later I developed sacroiliacitis - the events and treatment then are a story in itself but in the end I was sent to the pain specialist as the quick method had caused another problem. She said my entire back muscles were as hard as boards - and said it was very likely myofascial pain syndrome. The physio agreed and the two of them did a lot of work on the muscles. And both of them agreed that the orthopod had been wrong, the low back pain was muscular in origin. It has gone - I can walk as long as I like now. But all that pain has gone: the upper back pain was not only PMR - underlying it all was myofascial pain syndrome in shoulders, mid and lower back. Dealing with one doesn't always do the job - you have to sort out both.

  • kadge
    kadge

    Posted

    Just a quick update, had my blood results back all normal so went back to see gp, she thinks it may possibly be the menopause. Not so convinced myself her reasoning was because I was hot but I had just walked 20 mins with a buggy in pain! Got to have more bloods done in 2 weeks to test for menopause and at present been given naproxen and co-codamol 30/500. I still feel my symptoms fit with PMR or even fibromyalgia. Just a waiting game now
    • EileenH
      EileenH kadge

      Posted

      The normal bloods do not mean it isn't PMR - 1 in 5 don't have raised acute phase reactants. Though I DO know the difficulty of persuading the unbelievers of that. I still cannot believe the way they dish out naproxen and cocodamol like sweeties but wont try a 15mg/day pred trial! If it doesn't work you have lost nothing except one week.

      Good luck

    • kadge
      kadge EileenH

      Posted

      Thank you, well if these blood results come back with nothing then I am going to suggest at least trying the trial of Pred like you say I have nothing to lose.
    • EileenH
      EileenH kadge

      Posted

      We have had a lady on the forum whose PMR symptoms did turn out to be menopausal - PMR, after all, is just the name given to the symptoms of an underlying problem. Unusual for a doctor to think that ahead of our sort of PMR though. 

      Looking forward to hearing the result.

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.