Still not sure whether to accept PMR diagnosis

Posted , 7 users are following.

Hi all. Not been on for a while, had do much on & takes me so long to do anything.

PMR diagnosed 6 months. All pain from waist down returned, including muscle twitching & tingling. Neck, shoulders etc all fine.

My inflammation is back to a very normal 12 ESR & 5 CRP.

I can't walk or stand for 30 mins without severe pain & needing the loo. I get out of bed fine, my pain starts when I'm on my feet.

I've been back to doctors several times asking for referral & further investigation. Doctors can't refer as PMR is dealt within surgery, here in the South East.

Given me HRT as hormone levels show I'm menopausal & the hot flushes have been coming in droves. I'm 48.

They say alot of other my symptoms & the fact I feel a complete wreck are both PMR & menopause.

If this is the case I will accept that & realise there's a long road!

My other option is to keep on at them like a hypochondriac!

I'm still very confused by it all. Happy to hear your stories & any feedback. Thank you so much.

0 likes, 21 replies

21 Replies

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  • Posted

    Just wondering if you have back issues?  In most cases I think people with PMR loosen up once they've managed to haul themselves out of bed and moved around a bit, rather than getting worse after rising.  But compressed nerves can do funny things including causing symptoms far from the source.

    • Posted

      Hi, yes have back issues. doctors sent me for physio last year & now blame it all on PMR. Thanks for your reply, nerves are definitely an issue in this case I think.

    • Posted

      i hope you get things sorted soon.  
  • Posted

    Have you not seen a rheumatologist at all? 

    What you describe doesn't fit with simple straightforward PMR - and the "I can't walk or stand for 30 mins without severe pain & needing the loo. I get out of bed fine, my pain starts when I'm on my feet." absolutely isn't. At the very least you need someone to investigate the state of your spine as there appears to be something going on that results in a change between horizontal and vertical. 

    I wouldn't accept a refusal to refer - have you someone to take with you? 

    • Posted

      Hi Eileen.

      Not seen a rheumatologist, up to now they've said not necessary as will monitor at surgery. I'm on 20mg Pred daily & they insist as it's PMR they'll watch and increase again as necessary.

      My physio thought early degeneration of spine possible. On his investigation he said I had no reflexes below waist. My numb legs & tingling were likely to be nerve damage caused by spine. This report went to doctors & after doing blood tests diagnosed PMR.

      Taking a chaperone is an idea I hadn't thought of & an excellent one, thank you!

    • Posted

      Hi Eileen

      You kindly replied to my first ever post a couple of weeks ago wherein you suggested my symptoms (severe pain on my left-side on getting out of bed and lasting for a couple of hours or more) might not be entirely due to PMR. I saw my GP and have subsequently had an X-ray, which confirms that the severe pain I am having is due to degeration of my lower spine and referred pain. Over the years I have fractured my coxxcyx on two occasions. I just wanted to thank you for pointing me in the tight direction. 

      Regards Maggie

    • Posted

      Hi Maggie, I read your post with interest as I think my back and leg pain are derived from degenerative spine. What treatment have they recommended for you in light of this?
    • Posted

      There is far too much blaming PMR and/or pred for pain we have - it isn't always and when you get the diagnosis right you can manage it better. I'm glad you now have the right answer - though whether it helps a lot I don't know! Can they do anything to helps the pain?

    • Posted

      It's my suspicion too - and the nerve damage needs to be taken seriously. Good luck!

    • Posted

      Hi Sars77

      At the moment it's still - Tramadol (2 x 50mg tabs 4 times per day plus up to the same dose of Paracetamol)! and of course the Steroid and supporting PMR meds. I've just this past week reduced my Pred from 20 mg to 17.5mg, so it's back to all the clonking noises coming from my joints when I move. I am having blood tests mid next week and when the results are available I shall see my GP. I am hoping that we can then concentrate on alleviating the excruciating pain which I now know emanates from my lower spine. If I could sit or lie down all day I would be fine but immediately I stand up its agony, despite the meds. Quite frankly I feel like a hypochondriac-old croc whose pills aren't working. I hope you get the help and support you need very soon! 

        

    • Posted

      Hello Eileen

      At the moment it's just pain management with Tramadol, Paracetamol and the PMR related drugs. If I could or would sit or lie down all day I would be fine but as soon as I stand up it's agony... but a least I know what it is now! Thanks for your help. 

  • Posted

    Are you on prednisilone? My inflammation has never shown as abnormal but the pred worked on my pains immediately. Even when I have had flares, my blood tests show as normal! Sorry you are feeling so rough. Been through and still going through the menopause so feel your pain !
    • Posted

      Yes, 20mg daily. Initially I responded well to Pred, then was increased every few weeks when pains started to return . My inflammation levels were raised initially & the Pred did reduce so I responded and presented in a typical PMR way.

    • Posted

      Have you been at 20mg since diagnosis?
    • Posted

      As prescribed by doctor I did an initial 1 wk at 20mg, 1 wk at 30mg. Then down to 10mg for 6 wks, then when pains increased put up to 15, then 20, for about 2 months now.
    • Posted

      What an appalling way to mess about with your dose! After the intial week at 30mg you should have reduced steadily and SLOWLY to find the right dose. Apart from any other consideration you were going to miss finding that "right" dose and it is unfair to anyone's body to go from 30 to 10mg just like that. Especially in PMR.

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