Read about the journey that ended my 20 years of suffering with Tietze's Syndrome »How to Tell if You Have Tietze’s Syndrome
Filed under: Tests | 32 Comments »Why even your doctor might miss a Tietze’s syndrome diagnosis
I consider myself to be a fairly smart person, and I consider doctors in general to be pretty smart. However, Tietze’s syndrome is a rare disorder, so rare that even your doctor might miss the diagnosis (he’s going to be trying to decide between about three dozen different possibilities for your pain, and Tietze’s is way down on that list). Two general practitioners and two specialists missed my diagnosis of Tietze’s syndrome; it took one year for me to finally get diagnosed–and that made it a lot easier to deal with. This short article will let you know how to tell if you have Tietze’s syndrome–a benign inflammation of the ribs–or something more sinister, like Pleomorphic T-cell lymphoma, a rare cancer.
How to tell if you have Costochondritis or Tietze’s syndrome
(Small disclaimer, I’m going to assume that you’ve already seen a physician to make sure your Tietze’s syndrome pain isn’t caused by heart problems or other serious illness).
Tietze’s syndrome clue #1
Do you have intense pain in the rib cartilage area? That’s at the junction between your sternum and ribs. The pain could be so severe you might even mistake it for a heart attack. The pain may radiate, and you may not even be sure of the central location for the pain–just that it’s somewhere in or on your chest.
Tietze’s syndrome clue #2
Do you have pain in the chest area when rolling over in bed, or trying to get out of bed? This is caused by pressure from the ribs squeezing the inflamed breast plate cartilage. You might feel this pain when otherwise twisting, turning or bending.
Tietze’s syndrome clue #3
Does the pain radiate from the chest to the arms and shoulders? (The pain might be so severe it could feel like it is coming from everywhere).
Tietze’s syndrome clue #4
Is the pain worse when breathing? Sometimes even a little movement of the rib cage will cause intense pain.
Tietze’s syndrome clue #5
Tietze's syndrome pain locator
Lightly press down on the cartilage area between your sternum (breast plate) and ribs. Is it is tender and painful in at least one area highlighted in red?
These questions are the most common observations about Tietze’s syndrome and costochondritis. If you can answer yes to all five of these questions (or most of these questions–as you can tell, a diagnosis at this stage isn’t an exact science!), it is probably Tietze’s syndrome…but it could also be about one of dozens of other diseases (see my other articles here and here for other diseases that are often mistaken for Tietzes).
The Definitive Hallmark for Tietze’s Syndrome
The hallmark for Tietze’s syndrome is that in addition to the pain described above, usually only one rib is affected–the second or third rib down. There are rare exceptions–for example, if the swelling is in the first joint, it may be hidden under your clavicle and you won’t be able to feel the swelling. Feel the connections around your other ribs to see what’s normal for you. If you feel swelling at the first, second, or third junctions, you most probably have Tietze’s syndrome (according to Harrison’s Rheumatology). However, make sure you see a doctor: there are a couple of cancers that can cause one costal junction to be swollen and painful–namely skin cancer that has invaded the chest area and Pleomorphic T-cell lymphoma.
Can a Tumor be causing my Tietze’s Syndrome?
The chances of a tumor causing your pain are about as rare as Tietze’s syndrome itself (only a few hundred cases have ever been documented in the medical literature). However, the same tests that check for Tietze’s syndrome (an MRI or CT-scan) will also be able to definitively tell if you have a tumor. See this article for more information on cancers and other rare causes of Tietze’s syndrome, and this article for more information on tests.
Tietze’s syndrome(unlike cosotchondritis) can turn into a chronic condition lasting years, or even decades. Why should you get a diagnosis instead of waiting for the pain to go away? If your doctor tells you that you have “costochondritis,” you might expect the pain to disappear in a few weeks. If it doesn’t, you should insist on a test to rule out other causes.
Featured on 
:
learn to live well with
Tietze's Syndrome
Post a comment in the Tietze's Syndrome Forum »
I suspect I have this condition as well. I have sharp burning pains, most noticably if I stretch upwards, or am lying down in bed. Should I twist or turn I feel a sharp burning knot and I have to immediately get up to ease that pain. My doctor thought it was gall bladder, now thinks it’s an ulcer. My pain however is below my chest, almost directly to the right of my sternum and rib cage. I don’t know how to get diagnosed… I presented my doctor with this information and he just dismissed it and ordered an endoscopy.
KC,
A rheumatologist will be able to diagnose you with the condition.
Best of luck!
Stephanie
I was diagnosed with costochondritis in June after feeling like I was being squeezed in a vice. The pain lasts about 15 – 20 minutes, usually in the morning after I am moving around. After several weeks of this, I finally stopped having these “attacks”. Now, almost 2 months since my last one, I had another one this morning, so painful I was vomiting. I don’t know what this is, but would like some advice on what to do. I have an appt. with my Doctor on Friday.
Rebecca,
I wish I had a magic answer for you–I don’t. I had severe pain for many years. All I can tell you is that it does get better. Hot and cold packs worked for me. Have you checked out the “treatments” page?
Stephanie
I have had what I thought was a broken rib or torn cartilege in my ribcage for many years–always in the summer and not for the last two summers until this one. A retired doctor friend suggested Tietze’s syndrome and I’m feeling pretty sure he’s right on the target. Should I have any diagnostic tests to make sure there isn’t something more to this very painful situation, which for me does last for at least one month-two. Thanks for your assistance. Claire
Claire,
You may want to check out the “tests” post,
Stephanie
Hi Everyone:
First, I’m really glad this website is here because the nightmare of what I have been going thru alleviates some when I come here and read many of your posts to know that I am not alone.
I have been diagnosed w/ Tietze. However, the 5 doctors that I have been to do not know how to treat it. I live in a part of the country that doesn’t have good healthcare. Any suggestions? I thought about going home to DC to get treatment but not certain about that decision. I just can’t find a half decent physician that knows enough about Tietze.
Thanks to all for sharing.
Michelle
Michelle,
Seeing as the research on Tietze’s is so new (a lot of it has come out in the last 10 years), your best bet is to make an appointment with an MD/PhD at a teaching hospital. I am lucky to live near Shands (a teaching hospital for the University of Florida) and I see a rheumatologist there who is an MD/PhD and also teaches medical students. Because he is a university professor, he has to keep up with current research.
Best of luck!
Stephanie
i thouht i had lung cancer at one point but it
turned out i had Tietze’s syndrome. although it is still painful, i’m still relieved that it’s not cancer.
I have been suffering pain in this area for about twenty years. It is very intermittent and can disappear for months at a time…but it always comes back. It has laid me up for days but mostly it is a dull ache in my chest that explodes when coughing or sneezing (doesn’t help that I get hay fever!!) The pain can refer to any part of my upper chest & back, neck, shoulders & normally my left arm.
I have had three ECG’s during the most severe attacks to rule out heart problems, more x-rays & blood tests than I can count. Recently a local GP suggested it was T.S.
Great to know it has a name…but, I was hoping for some more help on pain management. I live on ibuprofen & codeine to alleviate the pain. Any help please
Matt,
All of the techniques I’ve learned I outlined in my book, but living on ibuprofen and codeine is never a good idea. Try some alternative therapies (massage/acupuncture). Ask to see a rheumatologist–at the other end of the spectrum, surgery is always an option for severe TS. You just have to decide if it’s for you and find the right Dr….
Stephanie
I have had severe chest pain for about two years now..Right in the middle of my breast bone/chest cavity…. It gets really bad when i start moving around. I wish I could find a doctor that would take me serious….I cant count how many doctors i have been too. On top of that no one will give me anything to help with the pain….. A really crappy way to live life..
Courtney,
Find a rheumatologist at a teaching hospital (i.e. an MD/PhD). They are up to date on current research (they have to be–they teach it!).
Good luck!
I was diagnosed with Teitze Disease after I threw something too hard with my left arm and when I threw the object I felt a ripping sensation from the middle of my chest right around to the center of my back. It’s been almost 2 years now and I have pain on and off. Right now, mostly on and I have a lot of burning in the middle of my back and down shooulders and my arms as well. I feel like I have a tight band from the center of my chest that wraps around to my back and the pain and burning radiate. My back is also tender to the touch.
Karen,
It’s certainly possible you have it…Tietze’s can be caused by the kind of trauma you describe. Try some of the treatments suggested on the site, and feel better soon!
Stephanie
Does it have to be the upper ribs. Myd discomfort is in the waist area of the ribs. I had a fall about 5 yrs ago. Landed on my side. When in bed I felt like I was sleeping on a ball of fluid. My doctor at the time just said inflamation or fat pocket. Sometimes the fluid would move to the middle of my back as I rolled over. It finally got better after 3 yrs. Now it only bothers me now and then. Like when shoveling snow. My new doctor now has dignosed me with tietze’s synd.
my 15 year old daughter has just been diagnosed with tietze’s syndrome.
we have been told by our doctor that there is no real treatment apart from anti inflammatories, does anybody have any suggestions?
I am still not sure what to think about my chest pain. I’ve been thru all the tests to be sure it’s not my heart, but it doesn’t follow the symptoms I’ve been reading about for costochondritis or for Teitze Disease. Only occasionally will my pain be exacerbated by movement. At times it can stab at my chest while I’m completely immobile. Sometimes it’s sharp & other times a dull ache. Can the symptoms for these two diseases vary that much? One other thing I have noticed is drinking cold liquids can help dull the pain. Is that typical? I do remember after having gall bladder surgery, I was straining to pee & felt a rip go across my stomach. Is it possible that has brought this on? Please let me know if anyone has any thoughts on this.
Kathy,
Your symptoms sound very much like mine. Cold can dull nerve pain…so that could be the cold drink effect.
Best,
Stephanie
Laura,
There are MANY treatments. Please get your daughter to a knowledgeable rheumatologist. Here is an article on treatments for tietze’s syndome. But please, don’t go overboard with the anti-inflammatories!
Best,
Stephanie
Sharron,
If your doc has diagnosed you I would go with that diagnosis. Tietze’s syndrome is usually in a certain spot (2nd rib from the top), but there are exceptions. It sounds like you might have an unusual case!
Best,
Stephanie
hi, for the past 3 months it started and had been to 3 cardiologist, gastro and what not.
i have all the 5 conditions and with the addition of neck spondolysis.
living it and hope it goes away. no one is able to diagnosie. pain management i apply some relaxants and it releives me of the pain.
Hi, I went to the hospital yesterday for the 2nd time this year. They did the whole routine again, eco, chest extays, blood, catscan. Then the released me..Looking at me like I was crazy. I have this pain in my chest for 3 years now, thinking I am having a heart attack or strange disease. It fells like someone is squeezing my chest, along with pain in my shoulder, neck, back and arms. While the pain is severe, it also has a pulsating rhythem. It hurts mostly when I sit and lay on my back. Usually, I have this pain in the winter. Help!!
I have many of the symtoms of TS, but I also get a tremendous pain in my left jaw, both upper & lower jaw, prior to my chest tightening up. When I have an excruitating episode, both arms become extremely tingly and weak – my chest feels like I’m going to have an alien burst out of it and my jaw feels like I’m having a root canal. I’ve had every heart test known to man and have an implanted loop recorder to monitor my heart. Heart is working good for a 66 year old. My Doc has prescribed Omeprazole – the 20 mg generic doesn’t help, Nexium 40 mg is fairly good, Kapidex 60 mg is better and the Zegerid 40 mg is the best. If I take it very easy my epidsodes are mild, any major physical activity and my chest starts tightening. It’s very aggravating. Does anyone else have these symtoms?
Hi, I am male 25 years old, athlete and non smoker. When I move my torso from side to side I get a sound “like breathing” from my chest even if I hold my breath. It’s like something is rubbing in there. I also noticed low intensity pain on the sternum or all around it(it’s not very clear) in some positions or movement of the thorax. The pain is increased when coughing or sneezing. It’s been five months since the day I noticed it. Are those symptoms of Tietze’s syndrome?
Aris,
That’s hard to say. I’d recommend a visit to a rheumatologist…what you are describing could be Tietze’s costochondritis, or a bunch of other chest-related diseases.
Good luck!
Stephanie
Gary,
Well, first of all it’s great you’ve had the heart tests. I can’t say I personally have experienced those symptoms. Major physical activity definitely can aggravate symptoms. Have you had a dentist look at your jaw? I could be completely off base, but your jaw pain sounds like TMJ. The pain of Tietze’s could cause you to get stressed and tense up…and if your jaw has TMJ and you tense it, that could cause the root canal-like pain.
Best of luck!
Stephanie
I’ve had this pain for going on 5 years now. Some days r better than others. My starts in the middle of sternum and then radiates outward. Always in the spot, 2nd rib, but changes sides. It feels like it is going to grab and start the severe pain. I feel like I can massage it out when it starts but now I’m walking around rubbing my chest all the time. I don’t hurt when coughing or breathing deeply. It radiates under my arm pit, then into my arms. Is this the same symptoms as some if you have. If so, has anyone found relief. It has caused severe anxiety which is a pain in itself. Thank u
Where does the pain typically start when you are having an attack? I’m getting the majority of my pain in the middle of my chest and above my breasts (on each side) directly below my collar bone. I’m swollen up on each side as well as in my left side rib cage below my breast as well…any help is greatly appreciated
I just went to the emergency room last night as I suddenly had this pain on my left side of my chest. The best I can describe is that it felt like an air bubble and worsened if I was sitting or standing a certain way. Also, when I took deep breaths the it was a sharp stabbing pain that also felt like it was going to my left shoulder and arm. I had the EKG, chest xray and blood work..was told everything looked “ok” by doctors.
Today it feels less intense but still I get the sharp stabbing pain if I take a deep breath or move a certain way. Does this sound like this syndrome??? I am 25..healthy..no medications..etc. The ER doctor sent me home and told me to take Motrin for the pain
It could definitely be Tietze’s Syndrome. If you can, get an appointment with a Rheumatologist who will be able to diagnose what’s going on.
Tammy–that is exactly what I had. I went to the Dr. today and was diagnosed with tietze syndrome. I’m still learning about it, but what you described is exactly what I was feeling–a burning pain/pressure across the top of my chest.