Tietze's Syndrome Talk

The web's first Tietze's Syndrome Community

1. 

   Steph Kenrose
   Key Master

   I was 26 years old, and I felt a crushing pain in my chest, and sure that I was having a heart attack (the pain was like an elephant sitting on my chest)–I asked a friend to drive me to the hospital. When I went through the doors of the ER, I was so sure I was having a heart attack that I didn’t think I was going to make it out of there. I was rushed to a bed, where they hooked me up to an ECG, and found…nothing.

   After a series of other tests to make sure I wasn’t in the middle of a pulmonary embolism or something else serious, they gave me a couple of Valium and discharged me. I still had the tremendous pain–the elephant sitting on my chest–but thanks to the Valium, I no longer cared.

   I’ve spent two decades with this disease, gotten a whole lot of education, and done even more research, and I finally found the answers. The symptoms of Tietze’s Syndrome are similar to many other diseases, and very few doctors know about it or can diagnose it. So after years of doctors telling me I was nuts, and recommending antipsychotics, or antidepressants for what is essentially a bizarre case of arthritis, I know they were jut not educated about this disease. Even after finally knowing what it was, I had no way to treat it — it’s so rare there is no big pharma research into it at all.

   Finally, after all my pain and doubt, I discovered how to diagnose it, and how to manage the disease, and I feel vindicated. Empowered. Hopeful.

   And I think to myself, there are other people out there — people with these symptoms who feel like they are crazy (because their doctors tell them they are!), who are living with a disease they can’t fix, but which causes agony in spurts. People having what feels like a heart attack a few times a week, and not only not being able to fix it, but being told there’s nothing to fix.

   But I’m here to send a different message:

   You are right. Your doctors are wrong. You really have a disease. Tietze’s Syndrome is what it’s called. Here’s what you can do to stop the pain. Everything’s going to be okay now.

   That’s my story, 20 years in the making, and it feels damn good to finally be able to tell it!

   -Stephanie

   Posted 8 months ago #
2. 

   pattykraemer
   Member

   They called me a hyprocondriacted if I spelt that right....lol
   Everytime I had that pain growing up until my mother had it and took me to doctor after doctor and finially 1979 they told me I had Tietze's Syndrome
   I was relieved and when the Doctor told my mother that their is no cure for this she cried because I suffered so much already and really at that point there was no meds for this either. So I was unable to play any musical instuments that needed breath so I started to play the Voila and I was also told that I would not be able to play sports in school because that brought on the attacks also. The Doctor also told my parents that it is like Patty is having a heart attack that is how he revealed what kind of pain that I was experiencing my mother cried more everyone thought I was wanting attention and they thought that I was faking all of this but in reality it is all true.
   So now I am going to be 41 years old and I get attacks about 5-10 times a month now but stress is a factor for me so sometimes more then 5-10 times when I was a child it happened almost everday. Thanks for sharing your story I think it will help alot of people (support is what most of us out here need anyway) and if we can not be supportive then why are we out here in the 1st place.

   Posted 5 months ago #

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