I have had what doctors think is Tietzes for nearly 10wks now. I notice from the websites, that Tietzes is supposed to be gone in 6-8wks. So I am confused. One of my doctors doesn't think it can be Tietzes as he thinks my case is too severe.
Is it possible to have SEVERE tietze. Or something that starts as tieztes, but causes further/other joint complications?
I have had an mri and a ct scan. i have more recently had my lump (which is on my sternoclavicular joint) slightly drained - results pending.
I have been told if it's inflammation they might go down the cortisone steroid route.
Anyone had this in their breastbone (sterno-clav) joint? Is it risky/worth it?
I haven't been able to use my left arm since all this started - can't wash my hair, can't get dressed without contorting myself, can't drive!
Anyone with similar symptoms out there? Let me know! I think it's baffling all my docs
I've had Tietze's syndrome since I was in high school, proberly around 8-9yrs?! I've been told there's nothing to worry about and nothing that can help it. Was just looking on the net as it's coming back more often than usual the now. And only just read it's over within a couple of weeks. Don't know what else to do, it's more of a hassle than anything else. Hope your ok hun
Jess
x
I'm so pleased to read that I an not the only one!
I'm 28 and have also had this horrible illness for 4 months and been in and out of hospital. I have had the CT and MRI scans and the protruding lump on my chest is HUGE!
In 8 weeks they are looking to start a course of cortisone steriod injections into my sternoclavicular joint.
I understand your pain....often it reduces me to tears...and I just have to stay in bed for days and rest. I'm putting on weight with the lack of excerise and really starting to feel down in the dumps.
I saw my consultant this morning and he has put me on Diclofenac tablets which will hopefully help reduce the swelling and pain...it may be worth asking your doctor for these.
Good luck and I hope you feel better soon xx
Hi, just wanted to say to your question \"does anyone have severe Tietze\" that Tietze syndrome is severe and the pain is agony bringing me to my knees in tears sometimes. There is no mild tietze except when you are coming to the end of the flare up after a number of painful weeks. Mine is in the breast bone both sides and is relentless although I have been told there is nothing wrong with me apart fom this condition which does not seem to harm you internally its just the most painful thing I have ever felt. I sympathise with you and really hope you find an answer to any other problems you are experiencing.
Hi all. Just wanted to say that I have had this same condition for 7 years and sympathise with you all. The pain is something which no-one will understand until it happens to them. I have been hospitalised twice thinking it was more than just Tietze because the pain has been horendous. My doctors are still investigating a form of treatment that will work for me. I have been on Dihydrocodeine and Diclofenac Sodium for 6 years now and the pains still occurr.
Just want to say good luck to all of you and keep going on it!!!
Hi All,
My wife developed Tietze syndrome after the birth of our secind child 3 years ago, she still gets chest pains, but hasn't developed a lump. I have just been diagnosed with a form of the syndrome, but it effects my lower left rib cartilege, I have trouble sleeping as no position seems to be comfortable, so I just don't bother going to bed until I am really tired. because of the position of my ailment I find it hard to twist or bend sideways, which is a nuisance because my job is very physical.
Good luck to you all
Hi All,
I'm so glad I've seen this as you do sometimes get to thinking you're the only one as like most of you have said you don't know how bad it gets until you've got it. I've had this for the last 9 years and it's getting worse. It just used to be at it's worst during the night and thus i ended up with only 2-3 hours sleep, but it's now on top form during the day as well. It doesn't come and go it's there all of the time. I have had the steroid injections into my chest but they didn't work for me, so I'm just drugged up most of the time. Had a really bad night last night and I do have to say it's getting me down so much now. I've read stuff about this and it normally says you get this for a couple of weeks at a time, so that's why I'm starting to worry that I've got it all of the time and it's getting worse instead of better. sorry If I've damped anyone's spirits, but I really am at my whits end with it now. :cry:
Hi l guess mines been going on since l was diagnosed with graves disease. I only used to get it occasionally (about 4plus years ago it started) used to notice it as part of my pmt!!! Had thyroid removed 16 months ago and now its worse l get it at anytime!! all the time it dont take much to trigger it off! I believe mine is caused by graves disease which has made my upper body really weak. Well thats my opinion! Just wish the docs would help more 
They dotn understand how disabling it can be good luck all x
Hey all, Tietze's Syndrome is exteremly painfull it been out 2-3 years now. the pain is awfull espically when its difficult to breathe its terrifying!. It makes i hard to do everyday things but atleast the pain isnt constant and it will away at random times and comes back at random times. very spontanious. In my home weve had to all be calmer as stress affects it badly. the only thing ive found that helps is a hot bath or shower or a heat pad. i find in the bath the pain is removed completly and do not want to get out of it.
hi all ive had this for near 6 years now and its starting to drag me down its running my life cant play with my kids as i end up in worse pain cant work everytime a get chest pain i think its my heart even tho ive been told many times its not no pain killers work even diclafenic a ice block ease s it a little but not alot just glad theres more ppl with it 4 me to talk too fort i was the only 1
Hello All ! Sorry to hear of all the pain. It is unbearable at times. I have suffered on and off for some time now but this time was the worst. I have a large swelling over my clavical and the pain radiates down my arm, into my back and up the side of my neck as well as across my chest . Have had an X-ray to rule out fracture of anything. So, yes, tietze was diagnosed..... My Doc. has prscribed me Ketoprofen Gel to rub in twice a day; it does begin to have effect after the first few times of application. You must remember to use it regularly. So get your G.P. to prescribe you some. Give it a try. It has helped me.
I have had Tietze for about 10-11yrs now. My first bout was the worst, the pain was horrendous and I was signed of work for 3months as I wasnt able to sit upright properly. Thankfully I dont have any lumps, but I have bouts on and off all the time, especially after a cold that has given me a cough. I am on Diclofenic at the moment which helps a bit but you never know when it will hit you, it can be really frustraiting to say the least. I now have it in both hands as well, which they think is really unusual (had numerous tests done on my hands to determine the problem) and hard to deal with since I have a 3yr old daughter, but she knows mummy gets sore hands and to be careful. There is a treatment to help but my Dr said that he would not put me on it as the side effects are not appropriate for a 33yr old active mother/wife. He has just taken another patient off it cause of the side effects (she was 50yrs old). Hope your all coping ok with it or as ok as you can.
[quote:2f4c00fbc4=\"Lassie\"]I have had Tietze for about 10-11yrs now. My first bout was the worst, the pain was horrendous and I was signed of work for 3months as I wasnt able to sit upright properly. Thankfully I dont have any lumps, but I have bouts on and off all the time, especially after a cold that has given me a cough. I am on Diclofenic at the moment which helps a bit but you never know when it will hit you, it can be really frustraiting to say the least. I now have it in both hands as well, which they think is really unusual (had numerous tests done on my hands to determine the problem) and hard to deal with since I have a 3yr old daughter, but she knows mummy gets sore hands and to be careful. There is a treatment to help but my Dr said that he would not put me on it as the side effects are not appropriate for a 33yr old active mother/wife. He has just taken another patient off it cause of the side effects (she was 50yrs old). Hope your all coping ok with it or as ok as you can.I don't have lumps either, but the pain in my ribs and in my wrist bring me to tears all the time. I am just barely into life as an adult, I've had this since I was seven, and it's terrible. Living with this is something I dislike, but it's just what I have to do. I find pressure and heat help though... strange thing is, on here it says that Tietze is primarily on the left ribs... mine hits HARD on the right... hmm... well anyways, I'm happy I found a site with people just like me. It's calming. >
^<
I feel that applying pressure when the pain is in my chest works but not with my hands though. The only thing that helps with my hands is resting them until the pain passes. I find with my hands the pain does not last as long as my chest but is more intense though. It is very frustraiting as I know now that we are coming into the winter my bouts will become even more regular!!!!
i cant take much more of this pain gonna end up ending my life
Hi everyone
I have had pains in my chest for 2 weeks - went to doc who said 'infection' (even though i knew it wasn't) and out me on anti-biotics. Of course they didn't work, pain getting really bad so went back to diff doc today and bang, Tietzes. He says no big deal but reading these comments is freaking me out. I already have ank spond so don't need another lifetime syndrome to deal with!
Anyway, has been helpful to see what others have gone through and will help me to understand if things do start to get worse - I hope not.
I hope for some of you things start to ease as this sounds like one of these 'no-one knows what causes it and what to do about it' nightmare illnesses.
Cheers
Zoe
Hi I also have Tieze for over 15 yrs now have tried bout every drug out there with not much relief I'm wondering did your Mir or ct scan show up your inflammation in your ribs?
Hi,
I'm glad I am not the only one! I have had tietze's for 8 years now and over the last few months it's been getting worse and worse and no one seems to know what to do about it, so it's getting me down and I am not sure where to go from here.
I have had 3 operations the latest being last October to remove cartilage that has broken off from being so inflamed and to shave the remaining stuff back to try and stop it swelling so much. So far I haven't found anyone else has had operations for this.
If you manage to find a miracle cure please let me know! Am waiting to go back to the pain clinic but my gps referral seems to be taking its time!
Gemma
I have beeen told I have chronic tietze . Chronic meaning long lasting as opposed to acute ( 8-10 weeks) From what I have read, no one has found a cure but I have got myself to the point of leading a more normal life from not being able to breathe or bend or move much or walk far or push a trolley, things like that. I have had mine for 3 years now. Some people can get rid of it altogether, others not - not sure why, but my physio says every person is different.
All doctors are baffled by this condition and I find it appalling, given everything else they can do these days, some are more understanding than others - I went through 6 doctors at two practices !!! I send you my best wishes, don't give up. try to relax, its not life threatning, just quality of life debilatating and very painful. 
Best Wishes
Hi. I live in the UK, and wondering if there are any support groups in the midlands area for Tietze's syndrome? I have been diagnosed today after passing out with chest pains last November. Thought it was a heart attack but all tests prove a healthy heart. After being diagnosed today and looking up the symptoms I now realise I must have had the condition over 25 years.