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Should I suggest to my GP I think I have PMR?

Posted , 11 users are following.

jane0118
jane0118

Hi

I have had bad shoulder and neck pain and stiffness since the beginning of July. I took ibuprofen for two weeks as this has worked before for me and then rang GP as I felt I needed Physio. ( I had meningitis when I was 28 and physio helped lots and since have had lots of neck injuries which physio have fixed.)

The receptionist said there were no appointments and to ring the next day. I was in so much pain and could not turn my head to see out of the drive when I needed to drive to work, I felt needed to do something, so rang Physio, said I could self fund and was seen the next day.

My neck and shoulders were solid. I had very limited movement. I had physio 2 a week and my neck felt better BUT then I got really bad pain  in my hips and thighs. I had difficulty walking, was very stiff in the mornings but better by lunchtime. I have really bad hip and thigh pain at night and wake with the pain. By end August physio was worried. 

The physio checked me for MS as my mother was really worried by my walking. I went to the GP who said he thought my walking was fine and did not know what was wrong with me. He asked me direct what did I think was wrong with me ! I did not know apart from I am in so much pain some days I cannot get out of bed or in the bath or get dressed!

He did some blood tests and they came back as a high C Reactive Potein. The normal is 1.5 to 5 and mine is 18. He said that we need to do the test again and then he would refer to rheumy if still high. 

An hour later he asked me to return to see him as he thought he ought to examine me for Guillane Barre syndrome and kept asking me about my breathing. I have a friend with GBS so know about it. Friend went into hospital 6 months ago and is still there! GP decided to ring on call neurologist who said do an urgent referral and I should be seen in 2 weeks. 

So I have sat at home and panicked! I have checked Internet for Guillane Barre and my symptoms do not fit.

I found PMR and it fits. Should I be bold and ask to see rheumy and ask for pred? Or should I see neurologist and wait and see?

My pain and stiffness are so bad I cannot do so many things. I have good days and bad days. 

I am female and 50. 

Apologies for a very long post. Thank you in advance. Forum is wonderful. Jane

0 likes, 52 replies

52 Replies

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  • EileenH
    EileenH jane0118

    Posted

    PS - 50 is the new lower age suggestion for PMR, it was55 but has been revised. I was 51 when it started and there are several under 50 on the forums.
  • Oregonjohn-UK
    Oregonjohn-UK jane0118

    Posted

    Hi Jane, I can only repeat what most have said on this post.  Preds (the Steroids) work more or less instantly.  It's already been said 'don't be put off by the side effects'  once it's 'confirmed' you have PMR, you have to learn to live and closely monitor your dosage - we are all different!!  There are medications for the more common side effects i.e.. Calcium and Andronic Acid which reduce your chances even further.  I had 'relief' from the symptoms within a few hours of starting them - it's NOT a miracle cure but an instant relief of the symptoms, there is no cure as it's caused by the auto immune system not working correctly (out of kilter!)   Patients is very much what all of us need as it’s a long term 'illness'!  Best of luck and I hope they sort it quickly.
  • denise76179
    denise76179 jane0118

    Posted

    Hi Jane

    It seems that because I'm in a diferent time zone to you I am the last to reply and therefore all the good advice the others give is there already.  I would say you have PMR or similar and i say this from my experience leading up to my PMR I had sholder pain that came and went and also bad neck stiffness which came and went until whamO the PMR hit fully and I could not get out of bed and get dressed.  Pred at 15mg fixed my pain in a matter of a day- my blood test were much higher C-reactive Protien was 75 ESR was also way up can't quite remember how high now but very high.  that was 5 months ago and I'm going fine blood tests okay now and I'm reducing pred as Eileen suggests.  Take care and suggest to DR he check all the things that it could possibly be including PMR. 

  • paula63201
    paula63201 jane0118

    Posted

    Hi Jane,

    Similar issues for me. Couldn't get out of bed, as I could put no weight on my arms due to acute shoulder pain. Could not move neck left or right. Barely able to sit down on my own. And once I was sitting, could not get up. My husband had to lift me off the toilet. Could not get in and out of tub without help. Could not lift arms to wash hair. Could not switch light on and off. All due to PMR. CRP was 15.4. SED rate was within range.

    • jane0118
      jane0118 paula63201

      Posted

      I can go one better... When I am really stiffin the morning, I crash down onto the toilet. This week I broke the seat! I am only 64kg so not that heavy. I have to pull myself up by my arms or shout for help!

    • ptolemy
      ptolemy jane0118

      Posted

      Haven't actually broken the toilet seat, it is wooden though, but I have managed to break one of the clips when collapsing onto it. Jane, you really need something to improve your life. I do hope the rheumy gives you pred. In my case it is difficult to imagine how bad I was before pred, but you are bringing back memories, getting off the loo was like climbing Everest.
    • bedilia
      bedilia jane0118

      Posted

      Jane, I am so sorry to hear you are having such problems.  Getting out of bed in the morning is always a long drawn out process.  First I do stretching exercise while in bed and then when I feel ready, I sit on the side of my bed and do more stretches.  When I feel that I can get up and go to the loo I take small steps until I am sure my footing is solid.  I hold onto something in my journey to get on the loo.  Getting up can be just as daunting.  I move slowly and so far have been able to get up without too much difficulty.  Sometimes it takes me 20-30 minutes to accomplish this once easy task!  This morning it took me an hour to get out of bed, walk to the loo, and then wash my hands and face and brush my hair!  Sheesh!  

      Christine

    • MrsO-UK_Surrey
      MrsO-UK_Surrey jane0118

      Posted

      Jane, would a rised toilet seat with arms help?  Social Services supplied me with one when I was eventually diagnosed - coping without one had been a nightmare!
    • EileenH
      EileenH jane0118

      Posted

      If you are in the UK you can be provided with a high seat to put over your toilet which makes it easier to get up and down at no cost to you - the local Occupational or Physioththerapy departments can provide information if your GP practice doesn't know where to send you. They can also advise on other aids and assistance. One lady I know in a housing association flat was able to get a shower installed because of the disability associated with PMR meant she couldn't get into or out of a bath.
  • bedilia
    bedilia jane0118

    Posted

    Jane, even grab bars or a walker with a seat would also be helpful.  Good suggestion Mrs O!
  • Mrs.Mac-Canada
    Mrs.Mac-Canada jane0118

    Posted

    We have great health care here in Canada but long waits sometimes for specialists.  When things get really difficult many people just go to hospital emergency and that way there are Dr's available right away, even specialists if you need them.  Would it work for you to go to emerg because you are in such pain and take the information about PMR with you?  It is ligimate because you stand a good chance of falling and really  injuring yourself trying to work around the pain.   I feel so badly for you that you are feeling so terrible and there is something out there that will help but no one will give it to you. Pred can be prescribed for things like asthma (as my daughter has had many times) for a short period of time.  It doesn't have to be a years prescription or monitored.  If it works then you know its PMR and you can continue from there.   Just doesn't make sense!!!! 

    I hope someone will listen  to you and that you're feeling better very soon. 

    • EileenH
      EileenH Mrs.Mac-Canada

      Posted

      That works for GCA (sometimes) in the UK - but you can't guarantee you will see a specialist and I do know people who were sent away from A&E with blatant GCA symptoms because the person you are most likely to see in A&E is what used to be called a "house doctor" - someone in the first couple of years of medical practice who are there to do the triage. If they don't recognise the seriousness of the symptoms you are stuck - they will tell you to go back to the GP as it is not an emergency. They are quite good at heart attacks and broken legs - because they can see evidence of what is wrong.

      It's a problem most places I think and the most important place to educate in this case is at GP level but they are overwhelmed and have no time to listen to education. They don't perceive PMR or other inflammatory arthritises as an emergency - you rarely die from them after all. Unfortunately they also often miss the signs of GCA - which is a medical emergency and means you should be sent to A&E with a letter outlining the problem but they refer a patient "urgently" - and in the UK that means you will be put a bit higher up the list than a routine referral, so you are likely to be seen in 3 months instead of 4. Is it not similar in Canada? I have met several people from Canada on another forum - but they live in the back of beyond. Their nearest rheumatology consultant is a few hours away!

    • ptolemy
      ptolemy Mrs.Mac-Canada

      Posted

      My nephew's girlfriend is a junior hospital doctor working in emergency. She tells horrendous stories of people coming saying they have love bites, one woman said her son had dog mess on his shoe and she says some people come in just to get a bed for the night. Not to mention all the drunks. The NHS does not stand a chance it seems.
  • erika59785
    erika59785 jane0118

    Posted

    Hi Jane, I had and still have the problems you explain.  Yes, I am sure you have PMR.

    I had severe neck pain at one time when I could not move my neck to back out of my parking space.....then my right shoulder was painful, and they wanted to do an MRI and surgery for a rotary cuff tear....on and on.... UNTIL I saw my GP and he said that I have PMR, and I do not need surgery etc.....

    He started me on 15 mg Prednisone for a week and then down to 10 mg for 3 weeks.  I saw him, and I was fine.  He said to taper down with 1 mg for a month, but I did get a flare, and my hips and lower back started hurting terribly, and I can hardly walk.  Back to the doctor last Monday, and he prescribed 30 mg Prednisone divided for 3 days, then 25 mg for 3 days, 20 mg for a week....and gradually lower.

    I hope, it is going to work, but I am still in pain.....not severe..... but only somewhat better. 

    This is my story.  Hope, your doctor can help you feel better!

    All the best,

    Erika

     

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