Comments on: Shipboard Virus Causes Tietze Syndrome

By: Tammy

Tammy — Mon, 11 Jan 2010 22:26:27 +0000

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

By: Steph Kenrose

Steph Kenrose — Thu, 07 Jan 2010 14:21:46 +0000

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!

By: Tammy

Tammy — Tue, 05 Jan 2010 22:15:32 +0000

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?

By: Steph Kenrose

Steph Kenrose — Tue, 15 Dec 2009 14:12:58 +0000

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

By: Dawn Stafford

Dawn Stafford — Thu, 10 Dec 2009 18:48:07 +0000

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…

By: Steph Kenrose

Steph Kenrose — Sun, 15 Nov 2009 18:49:10 +0000

Heated wheat packs! What an idea…where do you get those?

Stephanie

By: Julie Mason

Julie Mason — Sat, 14 Nov 2009 17:37:14 +0000

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!

By: Emma

Emma — Wed, 11 Nov 2009 17:02:51 +0000

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.

By: Steph Kenrose

Steph Kenrose — Thu, 08 Oct 2009 07:46:43 +0000

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

By: Kim Rogers

Kim Rogers — Tue, 06 Oct 2009 23:11:32 +0000

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