newly diagnosed

Hi all,

9 months ago I was diagnosed with pernicious anaemia, today I was also diagnosed with Fibro and Chronic pain.... feeling really low and not really got a clue where I am going or what I am doing, so I have joined a couple groups here to try and get some info on all 3 and change my life.

Have been arguing with Dr's for 5 years to get to this diagnosis, and although I am really happy to finally have some answers, I am also pretty upset I got into such a debilitated state before getting help.

Sorry for the negative post, bit all over the show! - Looking forward to getting to know you all and getting some fab words of wisdom.


6 Replies

  • Hi Gem welcome. You didnt wait until you got so ill you feel as you do, you had to argue with the doctors to find out what is wrong. Why do we have to fight all the way to a diagnosis and treatment? I have fibro, chronic pain and osteoarthritis among others and still dont think this is the end of what is wrong with me. I keep getting told Its the osteoarthritis or Fibro or in my head. Last year diagnosed with sero neg rheumatoid disease and this year Ive been told I dont have it even though I have been given drugs for this condition. It is messing with my head. Sorry you came on here for words of wisdom and I go off on one again. Well for one I am not wise about anything and secondly I have too much brain fog to remember any wise words. Sorry not much help. From what I feel the chronic pain is part of fibro (I think) when I dont pace myself and remember I am not wonder woman pain brings me back to earth with a bump. I woke this morning feeling like Id been run over several times by a huge tank and all because I went shopping after a hospital appointment the day before. I should have just done the one thing. Sorry Im going off on one again. What Im trying to say is dont be hard on yourself it takes time to learn to live with changes these things bring. I still get angry, frustrated and upset as Im sure many others on here do too. Take care. Gentle hugs Joolz.x

  • Thank you joolz.... Don't worry about ranting, im here to listen and support aswell as learn and get support :-) ... I think this group is so special as so few ppl understand how you feel and even fewer refuse to believe your poorly so knowing ppl understand is a huge relief I find!!

    Yep I have been overdoing it and the rheumatologist tests yesterday have left me in alot of pain, but no rest for the wicked huh!

    I hope you feel better in yourself soon and the Dr's finally get to a conclusive diagnosis for you



  • If you have Pernicous anaemia its very possible you have other auto immune diseases like hypothyroid or RA or coeliac

    Did your doctor do a full Auto Immune Antibody test ?

    Are you getting B12 injections

    Have Thyroid Function Tests been done

  • Hi, thyroid was clear, but im.unsure of other tests.... I have got to go back so will ask x thank you

  • be very sure to get copies of actual test results that have been done inc reference ranges

    Doctors all too often tell patients "normal " especially when it comes to thyroid yet its frequently anything but

    Fibro is normally a symptom of hypothyroid

  • Hi Gem.

    I'm glad to have you join us on here, yes arguing with Docs seems to be very common. To date I have got rid off one GP & surgery, two pain consultants, 3/4 + NHS hospitals & currently working on more. The NHS has also refused to treat/fund me treatment at 3 hospitals. I live in Birmingham & I have been to Oxford & Liverpool in a desperate bid for treatment. With all that has gone past to date I will never ever give up looking for help/treatment.

    Please don't get into a state again please come here for help/support.

    You can contact me for any help if this will help with things anytime night or day !!!


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