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Tietze syndrome 11 years and counting!

Posted , 5 users are following.

natasha7694
natasha7694

I was diagnosed with Costochondritis when I was 13 years old. Once I got more swelling they changed their mind and called it Tietze syndrome. I was told many times it would only last weeks and then maybe a year and now they appear to be confused. In fact the last doctor told me it was best to ask online and upload my MRI pictures. As they have sent me to lots of specialist and none of them know anything about Tietze.

?I am in pain more days than I'm not. Has anyone else found there doctors are clueless about this illness?

1 like, 3 replies

3 Replies

  • jason38469
    jason38469 natasha7694

    Posted

    It certainly does feel like there is little understanding of Tietze and Costo.

    I've had Costo for over 2 years now, I've lost my job because of it, I've been unable to find work and now claiming Employment and Support Allowance. I had a medical assessment earlier this year by DWP, who said I was fit for work because I could stand, walk and move my arms and legs (completely ignoring the fact that I can't lift anything or sit upright in a chair without being in agony even while heavily medicated).

    This was even with a note from my doctor, xrays results and everything else.

    I think awareness is much needed because I don't think people realise how life-changing it can be. I went from an active 30-year-old new Dad, to feeling like a dying 80 year old who can't even pick his daughter up.

  • grace50455
    grace50455 natasha7694

    Posted

    Hi Natasha, I was also diagnosed with costochondritis a couple of years ago. 

    Before that they told me it was pleurisy 

    I went to Dr. yesterday and now she says she's pretty sure it's rheumatoid arthritis 

    Because of al the inflammation.

    I don't know where your pain is but mine was in my left shoulder and my rib cage...

    Now my pain just moves all over .

    I have appointment with a rheumatologist for more tests praying for good results.

    I hope you feel better .. 

    I am thankful for all the ladies on this site who have lifted me up by sharing their experience and words of advice.

    I pray you find an answer soon.

    • natasha7694
      natasha7694 grace50455

      Posted

      Thank you very much for your reply. I have swollen ribs but find this can also be in places such as my collar bones.. I have been wondering if it is something else.

      ​Hope you get great results!

      ​Best wishes

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