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Newbie just looking to say hello :)

Posted , 10 users are following.

Cakegal
Cakegal

Hi all,

I'm so pleased to have found this forum!! I'm 39 and following a bout of flu (my first), at Christmas, I'm being referred by my GP to a rheumatologist for PMR.

I've had three blood tests over the past couple of months, which have shown increasing ESR and worsening anaemia. I feel extremely fatigued and tired most of the time and I have days where the soreness in my hips and neck are dreadful. It's worse at night, morning and evenings.

I also have problems with my hands - pain, stiffness and "sharp twangs" of pain and they sometimes go to sleep/numb at night when there is no pressure on them. I also get pains doing things like driving. Does anyone else have this?

Obviously I'm still to be formally diagnosed so I'm only going on my GP, but I'm still so happy to have found others who maybe in the same boat.

Thank you for any advice/comments smile

Kim

0 likes, 25 replies

25 Replies

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  • FlipDover_Aust
    FlipDover_Aust Cakegal

    Posted

    I am one of those who was diagnosed after a bout of 'flu' (actually it was bronchitis, but don't mind the details!)

    Your symptoms are very similar to mine - I'd get pins and needles in my arm from driving. I had no idea it was related at the time.

    How long before you see the rheumatologist? Can you get some prednisone as a trial before hand - it's really the quickest way to find out if it's PMR or not. If it works almost immediately, then it's PMR.

    I am one of a few of us that are moderating our diets in an effort to calm down our immune systems.  I am on the full Autoimmune Protocol - look it up. Although, don't get too overwhelmed by it - wait until you know what you are dealing with before you start something radical!

    • Cakegal
      Cakegal FlipDover_Aust

      Posted

      Hi smile thank you so much for posting.  Its really interesting to read that yours came on after a virus/illness and that you used to get the pins and needles too. 

      I had another doctors appointment today, to review my last lot of bloods.  ESR is still raised and he did a rhematology screening, which has also flagged up.  On that basis he has refered me to a rhematologist - I should get seen soon as I'm able to go private via the health care plan at work - I'm just waiting a call back from the clinic.

      Thank you for the diet plan information, I will be sure to take a look.  I absolutely appreciate I need to be diagnosed before assuming anything, so I'll just have a read for now smile

      Thank you again - its cheered me up rather to read about someone who appears similar to what I'm going through.  No one is the same I know, but it means a lot.

  • lee63556
    lee63556 Cakegal

    Posted

    I am so sorry you have PMR and so young. Must be difficult for work. And myself was just diagnosed with PMR three weeks ago. Consider I am 'lucky' because I am retired now. But I am not happy because it restricts me of movement. I had come acrossed whatever you mentioned in the mail. After two weeks Pred I can manage to turn in my sleep and pain is going further away from me. You are still young maybe you can recover quicker. Someone I knew thought she had PMR and only need neck adjustment from chiropractor. She is in a young generation like you. Get the result of blood test first and think about it. 
    • EileenH
      EileenH lee63556

      Posted

      There are no blood tests that show if it is PMR or not - it is a clinical diagnosis: on the basis of the symptoms. Nor is there any evidence that younger patients recover faster I'm afraid - I was pretty young and still have PMR 12 years on. In fact, some experts think that if a patient is young they are more likely to be "atypical".
  • Charlieschoc
    Charlieschoc Cakegal

    Posted

    Hi. Cakegal. I am female and 44.

    I had all the classic symptoms and was referred to a rhumy after I had a trial on pred that was a miracle cure.

    My mom has pmr so I recognised the symptoms. My gp and the rhumy nurse were great, very supportive.

    Then I got to see the main rhumy. Putting it bluntly he was a pig. He told me I was wasting his precious time and there was no way on this earth that I had pmr. He insisted I stopped all treatment immediately.

    I became very ill in the weeks following and my gp supported the rhumy, until one day I had had enough and refused to leave the surgery until they promised to help.

    I have never been so brave in my life but I felt so desperate.

    My gp out me back on prednisalone and referred me for a second opinion with a proffesor at the QE Birmingham.

    He is lovely. He hasn't said I have pmr. But he is treating me for it. He said he still feels I am too young but the blood results show that whatever it is I need help. He said it looks very much like pmr but he doesn't want to label me just yet.

    The good news. I have been on pred since late Oct 15. I have been so much better.

    I came down to 10mg from 15 but stupidly pushed myself to hard and decorated my upstairs now I am suffering a bad flair and I am back up to 15mg. Feeling better by the day.

    I hope my post hasn't put you off. I don't mean to scare you but be prepared to fight for yourself.

    This group have me the guts to fight. They are a lovely bunch and in my humble opinion know far more than most of the doctors.

    You take care. good luck with your forthcoming appointments.

    • Cakegal
      Cakegal Charlieschoc

      Posted

      Hey Charlie smile thank you for sharing your story. What an inspiration you are for not giving up!! I'm sorry one of your consultants was so dismissive. It must be terribly deflating sad

      I'll certainly post updates once I've had my appointments

  • Charlieschoc
    Charlieschoc Cakegal

    Posted

    PS... It may be worth asking your gp for a trial on pred. It could help with diagnosis...

    I am sure Eileen and a few of the others could offer you more advice on this xx

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