Read about the journey that ended my 20 years of suffering with Tietze's Syndrome »Shipboard Virus Causes Tietze Syndrome
Filed under: Causes | 16 Comments »A virus caused my Tietze’s syndrome. How do I know this? A bizarre series of coincidences that started with a trip to Ireland and ended with karmic retribution and a divorce.
In February, 1992, I traveled to Ireland on a ferry from Hollyhead to Dublin, a wave-riding roller coaster that took a nauseating 2 hours. I was on my way to a dog show, with a fellow dog breeder called Gwen. We knew each other only from seeing each other at a dog show every few weeks, and I wouldn’t say we were “friends,” but we had our love of Siberian huskies in common, and thus had a lot to talk about.
Tietze’s Syndrome Symptoms Appear
Six weeks after I returned home from the trip to Ireland, I sat on a friend’s couch watching Star Trek: The Next Generation when a crushing pain enveloped my chest. My friend must have seen my pale face, because she asked “Are you OK?” I wasn’t okay. I was in so much pain, I could hardly speak. I’ve given birth three times (all natural births), and childbirth had nothing on the searing pain I was experiencing in my chest. Convinced I was suffering from a heart attack, I said “you need to drive me to the ER.”
My friend rushed me into the ER, and Ihad the sickening, strange feeling that I was not going to make it out of the ER. After I described my symptoms (crushing chest pain), I had a heart-attack work up, and an X-ray to check for blood clots, and finally, after the major tests were negative, a dose of Valium that rendered me stupid enough to actually enjoy wandering around at WalMart with my friend, not buying anything. Don’t get me wrong–I was still in agony–but the hefty dose of Valium made me feel great about the pain.
Pain From Tietze’s Syndrome Hangs on
I took six weeks off of work, unable to move or sleep properly. It hurt to get out of bed. It hurt to get dressed. I couldn’t function without Valium to ease the pain. My then-husband, John, became irritable by the end of week 1, telling me to “stop feeling sorry for myself.” By week four, doctors began to suspect some kind of “underlying psychiatric disorder,” and John told to “shut the fuck up” when I whined about my ailment.
Granted, I did a lot of whining. It felt like someone was shoving a red hot poker in my ribs. Sometime around week 5, John kneed me in the face because he was “sick of my whining.” The following morning (and here is the karmic retribution), he woke up yelling in agony, screaming that he couldn’t get out of bed because he was in so much pain. My impatient, ill-tempered then-husband had caught Tietze’s disease himself.
I packed my bags and left. I never saw John again. A friend called me a few years back to tell me John had died of a stomach bleed, most probably caused by the copious amounts of Advil and Motrin he was consuming for the pain. I’m just thankful that I found out what the disease was (and therefore learned other techniques of controlling it) before it was too late.
The big clue to the origin of my disease came about six months after I left my husband. I realized that I hadn’t seen Gwen (the lady who had accompanied me to Ireland) in many months. In fact, no one had seen nor heard of her since the Irish trip. I called her on the phone and asked her if she had any plans to go to any shows in the near future. She said no. “I came down with a disease,” she said. “I’m in so much pain…I can’t do anything.” I discovered we had the same ailment. Like me, Gwen had come down with Tietze’s syndrome a few weeks after our return from Ireland. Add that to my John coming down with the disorder six weeks after I returned home, and we had out answer: our Tietze’s syndrome was caused by a virus.
The question on my mind at that point, was now that I knew what it was, how do I treat it? It took several years for me to answer that question, and you can find out what I did in this blog post on Treatments.
Featured on 
:
learn to live well with
Tietze's Syndrome
Post a comment in the Tietze's Syndrome Forum »
[...] I had a legitimate disease that was caused by a virus (how do I know it was a virus? See my post Shipboard Virus Causes Tietze’s Syndrome. Two decades later, I still have Tietze’s syndrome, but I’ve learned ways to manage it. [...]
im experiencing the same symptoms and more. I dont know what to do. Im 33 and in constant pain
Lisa,
I completely understand. I was in constant pain for many years. What worked for me is switching to an ovo-vegan diet (I do not know why that worked, but it did–I haven’t had pain in many months). I hope that one of the treatments you’ll find on my blog helps you. I’ll keep on looking for more alternatives!
Regards,
Stephanie
[...] posted my story about how I got Tietze’s syndrome early on in the blog, but by the comments and emails I’ve been receiving, many of you have [...]
When I was 16 I was hit by a car while riding my bike, flew thru the air and landed on my back fracturing my tibia and cracking my fibula. About a year later, one night I was awoken with a horrible pain that I brushed off as heartburn while my mother feared I was having a heart attack. Upon visiting a doctor, a cardiologist I believe, I was told I had Tietse’s Syndrome/Costochondritis (yes, he used the terms together) and it was probably due to the blow I received after landing on my back. I landed so hard the air was literally knocked out of me so I was unable to momentarily speak. I was treated with cortisone shots in several ribs and remained pain free for many years. I am now 47 and have had several bouts of this reoccurring pain over the last few years and I have just “dealt” with it. After reading many different articles and finding that TS and Costo are seeminly 2 different things, I wonder which of the two I really have. I remained confused with statements of chronic on going pain for this diagnosis and the rariety of that diagnosis, and even some statements that once treated symptoms rarely return. Any thoughts you may have would be appreciated. Thank you!
Dawn,
Although the two conditions are different (there’s an explanation of the difference between costochondriitis and Tietze’s in this article), the treatments are basically the same. There’s an article on treatments for Tietze’s syndrome here. I hope you find relief soon!
Stephanie
Hello…Please bare with me because I am just about at my wits end. I have been in severe pain for 2 years now. Have done the injections in my chest to no prevail. I know I’m driving my husband,Dr. and pain Dr. crazy, but I just dont think they have a clue how much pain I’m alway’s in. Just a background…I’m 51,very active with my 8 dog’s and 8 mules. I’m trying so hard to live my life as normal(my normal) as possible. Trying to hold down a new job that is very physical also. I live in the Houston, Texas area and I guess I’m just grasping at straws now. But if anyone knows of someone that can help me,PLEASE let me know. my e-mail is kimmiesbrands@yahoo.com. I know everything I have read is saying it does’nt last very long but mine is. Sometimes I just want to go to sleep and not wake up. Thanks very much and God Bless Kim
Kim,
I understand the feeling of not wanting to wake up :/. Tietze’s does get better. I know it’s hard to believe that right now…mine took about 4 years to subside, and dragged on off and on for many years after that.
See a rheumatologist who is up to date on current research (like an MD/PhD at a teaching hospital). Pain relief IS possible!
Good luck,
Stephanie
I have now had tietze’s syndrome for nearly 4 years. I caught mine after contracting a virus called Bornholm’s Disease which has similar chest pain but with flu like symptoms. I tried every available medicine/treatment even corsetry and physiotherapy but no masseuse would touch me because my muscles started to go funny in my back and none of them (including the nurses and doctors) had ever treated tietze’s before (it is supposed to go away after 3 months). I was then put on codeine, amitryptaline, the mood swings were terrible! Dicloflenac, Ibuprofen, the doctors discounted steroid injections as i had had a bad reaction to them in the past. They mixed drugs and homeopathic medicines in different doses eventually i became a bit of a zombie.
However, early on this year i contracted an infection in my stomach caused by a foreign virus, they put me on everything to try to get the pain and nausea to stop before my ribs decided to join in!
One of the drugs they gave me for the stomach pain was called Nefopan (or Acupan) 30mg. Within 20minutes the heart attack type pain was gone! Yes my ribs are still a bit sensitive even after the drug, but it takes away the worst (as i am sure many of you will be aware not even morphine can touch that pain!)
After 4 years, in less than 2 months i am off all the mind altering drugs, i take one to two tablets whenever i feel the pain coming on, it doesnt effect me working, and i pretty much do whatever i want now without worrying im going to end up in hospital at the end of the day.
I would recommend any sufferer to ask their doctor to give it a go. I will also say though that if it doesnt work the first time it will NOT work the second or third. Just give it up and try another analgesic. I hope this helps someone as i honestly wish the doctor had tried this 3 years ago or someone had told me to give it a go i really cant believe how much better i feel. There is light at the end of the rainbow (doesnt seem like it when your lying in a ball of pain with your ribs cracking) but believe me there is.
I was diagnosed with with this syndrome when i was 17 yrs old when I suffered from a DVT and a Pulmonary Embolism. Im now 34 and still suffer painful bouts usually after a virus or chest infection. Nobody really understands and most people dont want to especially employers! I guess I just put up with it and take strong painkillers. Keeping warm helps and these new heated wheat packs are fab!
Heated wheat packs! What an idea…where do you get those?
Stephanie
My doctor just diagnosed me as having costochondritis, but since I feel squishy lumps in my chest, I’m thinking it’s more likely Tietze’s Syndrome. He prescribed Clinoril. Reading about the Nefopam got me all excited, but then I found out it isn’t available in the US. Lovely.
My condition isn’t as debilitating as what I’m reading here. I’m just so glad to know I’m not having a heart attack that the pain, while constant, is bearable. On top of that, though, I have three herniated disks in my neck that add to the pain on the left side of my body. I’m hoping the Clinoril will ease some of that, too.
I’m trying to pinpoint when mine started. I think it was the middle of October right around the time I was diagnosed with bronchitis and an upper respiratory infection. Also, I have asthma. I have to say, it isn’t getting better…
Dawn,
Unfortunately, Tietze’s can take years to get better. Some people recover after a month, some people have it for decades. The pain does get more manageable over time though.
Best,
Stephanie
I was just diagnosed with Tietze’s yesterday and was given a steroid shot so the pain has subsided, thank god! I have a question though…is it normal to have shortness of breath because of the inflammation?
Tammy, bear in mind that I’m not a doctor, so if your breathing trouble becomes concerning to you, please consult your doctor about it.
That having been said, yes, I experience and many others I’ve spoken to report shortness of breath during episodes. I think the pain causes the muscles in our chests to constrict, which makes it harder to breathe.
My advice to you is to sit or lay quietly, and try to totally relax your chest muscles, maybe through meditation. It helps me… it may help you!
Best of luck!
Thanks Stephanie…this is god awful…my steroid shot seems to be wearing off a bit…or the pain episodes are starting to pound right through it
I’m seeing a specialist on Monday …I live in Chicago so I’m lucky there are some great research based rhematologists here…I’m wondering if there is something I can take that will help with the pain and the inflammation…I’m concerned because all I have been doing is poppind advil all day..and I have to stop!
Also, thanks for this website…it has helped me understand this disease greatly …there is not a lot of information on it…
is it also normal for your upper chest to swell underneath your collarbone but above your breasts?
Thanks