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Thread: Polymyalgia rheumatica

  1. #11
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    May 2013
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    Re: Polymyalgia rheumatica

    I haven't found a good one, any recommendations? x
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  2. #12
    Join Date
    May 2013
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    648

    Re: Polymyalgia rheumatica

    Argh my doctor drives me insane, called up, he says and i quote "i dont think he is barking up the right tree atall here" then proceeded to tell me "ill get your bloods done again but im sure they will all be perfectly normal" then after me saying AGAIN how im in constant pain, weather i walk/stand sit or lie nothing is helping and just went "yeah, yeah hmm yeah" nothing for pain relief, nothing to advise on how to help it, ive been using hot water bottles and tonight im going to try deep heat muscle soak but seriously im in agony.
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  3. #13
    Join Date
    Oct 2012
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    2,277

    Re: Polymyalgia rheumatica

    Sorry you are feeling like this, I have been through similar and I know how frustrating it all is, GP's seem reluctant to refer to rheumatologists if bloods are normal as a lot of auto immune conditions are usually diagnosed this way. They should still refer you though as you obviously in a lot of pain, does not seem very good that they have not recommended something to help your discomfort. I get widespread pain due to a condition that I have and find that heat pads are quite helpful, but I notice that you are already using hot water bottles. Hope you get some answers. xx

  4. #14
    Join Date
    May 2013
    Posts
    648

    Re: Polymyalgia rheumatica

    Thanks Alma. It really is terrible especially as there are so many anti immune diseases linked to my previous condition and nobody seems to take me seriously. I'm trying I cope, it's getting me down, I'm not anxious I'm last hat initial panic but a ER doc telling me he suspects this after telling him everything I'm annoyed my GP won't listen. I've picked my blood form up so ill get those done in the morning, here's hoping I can have some answers soon. Ill tr neat pads for when I'm at work, sitting down too long causes me great pain x
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  5. #15
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    Jun 2013
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    Re: Polymyalgia rheumatica

    :(
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  6. #16

    Re: Polymyalgia rheumatica

    Shivmarie, just wondering how you are getting on. I was diagnosed recently with PMR and have probably read too much about it and GCA. Hope all is well with you.

  7. #17

    Re: Polymyalgia rheumatica

    Hi joystick. I commented on your original post Re chronic stiffness as I had exactly the same. Then you mentioned polymyalgia. I eventually had that mentioned too and I too been diagnosed. Also reading too much about it and worrying about GCA. have you been on health unlocked's PMRGCAuk forum. Brilliant advice on there. How are you now. The steroids aren't working as I would like and I'm having trouble getting my head round it all

  8. #18

    Re: Polymyalgia rheumatica

    Hi. Go on HealthUnlocked PMRGCAuk. Brilliant forum. I'm 50. My GP said I am too young my inflammatory markers slightly up. On the PMR forum they all say markers can be normal in up to 20 percent of people. GP's don't seem to know what they are doing with it. My full story on there is under the name buttonshutton. There is someone called PMRpro amd Dorset lady on there. They are brilliant know all about it.
    Good luck x

  9. #19

    Re: Polymyalgia rheumatica

    Hi Buttonshutton - just seen your post and thanks for your advice. I did find PMRGCAuk forum and it is a wealth of knowledge - very well worth signing up to. I started on 15mg Pred and am now down to 7.5mg - that's since end May. I am also suffering with bad bursitis in my left knee which is not helping so I am trying to exercise the knee and keep everything moving without being able to move much. The result is sore joints - hopefully due to the exercises. I agree, it is hard to get your head around and I wish it was something I did not have - mine was certainly a result of the covid vaccine but probably my immune system was low to enable it to develop. I speak to the GP every month when I have a reduction in steroids and I actually got an appointment to see a GP face to face as I was referred by the hospital for the bursitis. However, the GP was a locum who offered no help and told me that if the knee became swollen again I would have to go back to the hospital. In the end a friend's husband, who has just had a knee operation, emailed me a copy of his exercises so I am putting my own programme together - and I am guessing this is why I am a little stiff due to the unusual movement. I'm also doing some somatics and yoga ... you have to do something, don't you?

    How are things with you? Have the steroids started to work yet or is your dose not high enough?

    The good news is that I met someone recently who had PMR but got through it and into remission six years ago and she is still drug free - so there can be a light at the end of the tunnel. Let's hope so for both of us. Take care and let me know how you progress. I shall try to keep an eye on the NMP forum now.

  10. #20

    Re: Polymyalgia rheumatica

    Hi. Joystick. I too just seen your post. This thing doesn't seem to send notifications. The pred ended up working on 25mg but now the rheumatologist wants me off it to scan me in case its something else so tapering quicker than I'd like and panicking in the meantime over what else it could be. Glad you are responding and able to lower the dose. Good to know someone recovered from it or got long term remission anyway. You take care too. I'll keep you updated once had the scan which will probably be January

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