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Tietze's forever??? Please help!!

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I have had Tietze's/costochondritis for 6 years now and it has affected my life drastically. Not sure if it began with a bacterial infection (like one doctor said) or a slight ribcage injury. My symptoms or more like 'gasping for air' and just abt passing out because i can't breathe as well as a feeling of 'swelling in the ribcage area'. The pain is around mid-section and wraps around so very difficult to sleep on side. It has affected my quality of life because i have become reclusive and don't do anything that involves a crowd because i don't want to get bumped or elbowed in the ribs. The last time someone hugged me (which was three years ago) i had to go to ER and get a steroid shot and dosepack because ribcage area was so inflamed. I am a thin person so that may have something to do with it--not sure because i saw where someone said that doctor told them they would get better if they lost weight?? When i go to a doctor (and i have been to many from rheumatologist to neurologist) they do not have answers for me as to why this will not go away. I have been told everything from vitamin deficiency to chronic inflammatory problem to 'they don't know what it is or what to do for me'. I am very frustrated at this time because I get roadblocks everywhere i go for help. Any suggestions?

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4 Replies

  • Guest
    Guest

    Posted

    I know how you feel and sometimes I don't, well I know now that the doctors really don't know how to fix us and a lot of the time I feel I know more than they do!

    I would really recommend accupuncture by a qualified doc. I never believed for a second that it would help but I've learnt to be more open minded since all this. The reason it helps is because it controls the amount of pain signals our brain receives so if the chest gets inflammed again it doesn't feel as painful-if that makes sense? Also apparently our nerves can get damaged from longterm tietze's and keep sending the pain signals to ours brains even if there is no inflammation.

    I still can not stress how good the symbicort inhaler is as it helps rest and relax the stressed and painful chest muscles.

  • Guest
    Guest

    Posted

    Me again... Just wanted to add the following as it took me a while to understand this so if I can help other tietze sufferers understand it now I will hopefully help!:

    When it comes to pain, especially constant repetative frequent pain, we feel pain because pain signals get sent to our brain to tell us there is a problem that needs to be seen to etc! So when we get tietze pain it is our natural instinct to try understand why we are in pain and how to fix it, which is especially hard when it's on the inside and we can not see the problem (unlike a broken bone, burn etc). So what I have had to learn is that although my body is telling my brain there is a problem in my tgatcis causing lots of bloody pain, I can't fix it and although it hurts, it's (hopefully) not doing any permanent damage or life threatening.

    I found this very hard, and still do!! I'm in pain right now and it's very hard to go against my human nature and try not to worry about it, even though it does feel bloody life threatening!

    What makes it even harder for me is that as I had pulmonary embolism in 2007 which feels very very similar to tietze pain, I have to be careful not to ignore the pain completely just in case it is a p.e again. I'm only 27 sad !!

    Ah it feels good talking about it! We should set up one of those meetings and talk it all out!!

    Hope things improve soon xxx

  • Guest
    Guest

    Posted

    I AM MOTHER OF 14 YEAR OLD GIRL JUST DIAGNOSED WITH TIETZES LOOKING FOR INFO FRIGHTENED BY WHAT I AM READING HER DAD SUFFERES FROM PANIC ATTACKS AND HAS DONE FROM YOUNG WONDERING IF CONNECTIONSHE IS TYPICAL TEENAGER STRESSES AND WORRIES ABOUT EVRYTHING BEEN PRESCRIBED ANTI INFLAMMATRIES ANY INFO OR ADVICE PLEASE
  • Guest
    Guest

    Posted

    Hi Denise

    Sorry to hear about your daughter and hope we havent frightened you too much. What is best to remember is it isnt serious, it's not life threatening it's really in the end down to mind over matter. ALthough it may feel bad at times there really is no need to worry x

    Best advice would be to make sure she doesn't stress as much as poss (I know thats easier said than done!) and when it's bad to rest as much as poss (again I know is difficult especially as she is young) keeping all upper body movement to a minimum i.e. no coughing, laughing! yawning sneezing etc. I always use a lot of ibulieve/heat rub all over my upper body and hot water bottles. I tried anti inflammatories and found they really didnt help and they are not good to take everyday. I take plain basic paracetemol for pain even though I know they are not anti inflammatories.

    Do you know what triggered it?

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