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Fed up now

Posted , 14 users are following.

kadge
kadge

Hi all

Well I finally have a date for rheumatologist June 13th

Being driven mad though have pain in hips, above buttocks, thighs, groins and stomach plus upper arms and shoulders.

At present I am working and trying to carry on through the pain but at night it's bad and lying in bed it feels like I have done a heavy gym workout and all those muscles ache. Again in morning it's bad I was up at 6 and now 2 hours later just starting to ease.

I feel trapped in limbo as Dr won't trial pred no painkillers touch it and I have to wait till June before I can even start a way onto a diagnosis. And to top it off I have calcific tendonopathy in my shoulder which again I have to wait till June to sort.

Do my symptoms sound normal for pmr or am I looking at something else do you think.

1 like, 21 replies

21 Replies

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  • whitefishbay
    whitefishbay kadge

    Posted

    Sounds like pmr pain to me.  I would try to get a cancellation.  June is a long way to wait when in pain. Sorry to hear it.
  • Tastyron
    Tastyron kadge

    Posted

    Obviously I'm in no position to give a diagnosis but it does sound like PMR to me. Surely your Dr could put you on Pred for a trial run for a couple of weeks. If it eases your pain somewhat then that would be a good indication that it is PMR, if it doesn't then he will have to look into something else.

    Better experts will be along shortly. Hope you sort this soon.

    Ron

  • whitefishbay
    whitefishbay kadge

    Posted

    Some GPs will give you a prescription for 15 mg pred and then dropping to 10 after two weeks.  Then you would know.  As Tastyron said wait and you will get some more excellent advice on this forum. Good luck. 
  • karen28161
    karen28161 kadge

    Posted

    I am no expert either , but what pain you are going through sound exactly what I went through , I also think you havePMR , 7 7 weeks is a long time to wait forPRED .... If I were you I would go back to DR and tell him your pain is unbearable and could you please go on PRED , at least until 13th June , do hope you feel better soon
  • Handbrake
    Handbrake kadge

    Posted

    HI Kadge,

    sounds like PMR ! Has your Gp done your blood tests? I would suggest you go back to your doctor as it is unrealistic to expect you to wait that long for pain relief. let him know that everything else isn't working. Surely he'll see sense and get you started on a test dose initially to test your response to prednisolone then at least you will know whether it's PMR!

  • MrsO-UK_Surrey
    MrsO-UK_Surrey kadge

    Posted

    Kadge, the symptoms you described do sound very PMR-ish, but there are many other inflammatory conditions that can also cause such pain.  Even a severe deficiency in Vitamin D can lead to pain in similar places in the body as in PMR.  Has your GP carried out a Vit D blood test, also blood tests for ESR and CRP to see if the latter two show raised markers of inflammation.  However, if you have had these latter two tests and they haven't revealed high markers, it is still possible to have PMR as one in five people are diagnosed with PMR in spite of normal bloods.

    As whitefishbay has said, your GP could at least have trialled you on a short term dose of 15mg of the steroid, Prednisolone, and if your symptoms improved by at least 70% within a few days to a week or so (sometimes within hours) that could very much be taken as confirmation of PMR.  It would be much kinder than leaving you suffer like this.  I can't begin to imagine how you are continuing to work through it.

    Are you having treatment from a physio for your calcific tendonopathy?  They can usually show you a range of exercises to help and, in the worst cases, a steroid injection may help.  An urgent appointment with a rheumy should be able to help on all counts - is a private consultation a possibility?  Roughly whereabouts are you - in case we can recommend someone?I do so sympathise as from my experience, my year of undiagnosis was far far worse than anything once diagnosed and on steroids.

  • kadge
    kadge

    Posted

    Thank you all for your responses

    Had low vit d last year but fine now take 2000 units as maintenance

    I begged the doctor for a trial she said without a diagnosis she won't and steroids make anyone feel better! Bloods came back fine but not had any since pain got worse. My muscle enzyme came back high indicating muscle damage hence why the referral. I just have the pain like I overdid it at the gym even sat on my sofa.

    No nothing for shoulder told to use it and see what rheumatologist says I know I have more than 1 deposit in more than 1 tendon in my rotor cuff. I can sort of live with it used to it now it's the pelvic girdle pain that's doing me and my doctors reluctance to take it seriously. She said the calcification shouldn't cause any problems well I tell you now it's very painful. Anyway just feeling sorry for myself now but thanks anyway it's really helpful

    • MrsO-UK_Surrey
      MrsO-UK_Surrey kadge

      Posted

      Kadge, if you aren't having regular blood tests to check your calcium levels, it might be a good idea to to so.  Whilst it is wise to take Vit D if deficient, taking it allows more calcium to be absorbed into your body and occasionally it is possible for too much calcium to be absorbed - just wonder if there might be some connection with the calcification in your shoulder.
    • kadge
      kadge MrsO-UK_Surrey

      Posted

      I am sure they were tested end of January and were fine. Also have calcific deposit in my left foot 5th metatarsal. Am hoping for a full mot from my appointment and some answers.

      I just feel like I am left to put up. The shoulder pain and fatigue have been going on since January last year and wasee put down to low vit d that didn't help. The arms and pelvic girdle pain and calf have been since January this year and all I get is fobbed off and blooming naproxen

    • MrsO-UK_Surrey
      MrsO-UK_Surrey kadge

      Posted

      Naproxen not giving any relief?  Another pointer to it being PMR or something similar that is likely to respond to steroids.  I took Ibuprofen for months during my undiagnosed days - didn't do a thing.......apart from reducing my kidney function!
    • Anhaga
      Anhaga kadge

      Posted

      Just want to tell yiou, first of all, that I hope you get the medical attention you really need asap.  However, along with calcium and Vitamin D3 you must take Vitamin K2 because that is the vitamin which guides calcium into the bones rather than it going into places where not wanted (like blood vessels and in your case joints).  There is now quite a lot of info about this vitamin on the internet although lots of medical people don't know about it yet.  My daughter is a registered dietitian, graduated only about six or seven years ago, and she didn't know about it.  It's NOT the same as K1.  So that is one thing which might help you.
    • Anhaga
      Anhaga whitefishbay

      Posted

      There are two forms of Vitamin K2 - 4 and 7.  The recommended dosage for each is very different.  I've read that there is no known toxicity for Vitamin K2 so probably following the recommendations of a reputable website, or advice from a good health foods store with knowledgeable staff, would be best.  The supplements also state on the bottle the recommended daily dosage.  It's confused a little because different countries have different RDAs for this vitamin.
  • Daniel1143
    Daniel1143 kadge

    Posted

    PMR...PMR...PMR

    Shall I continue?

    I had exactly those symptoms right down to the feeling of tendinitis in my shoulders which is actually flaring from PMR.  The antitdote: 15-20mg of prednisone.  Find a doctor or a quack who will prescribe it for you, but don't wait unless you enjoy the pain.

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