Frequent asked questions

TheTietze syndrome and Costochondritis  Association receives many questions about this disorder. Questions from people who have just been diagnosed with Tietze. From family members or employers who have a employee with Tietze. And even professionals who have very specific questions to help their patients. The Tietze syndrome and Costochondritis  Association is there for everyone who is interested in Costochondritis and Tietze Syndrome.

Special for young people

Tietze en studeren

Studeren

Studiefinanciering
In de wet op de studiefinanciering zijn een aantal regelingen opgenomen voor studenten met een handicap. Deze wet verstaat onder handicap: een lichamelijke-, zintuiglijke- of psychische functiebeperking, een chronische ziekte of dyslexie.

Soms lukt het door een bijzondere omstandigheid (bijvoorbeeld ziekte) niet om op tijd af te studeren. Dan kunnen ze je studiefinanciering verlengen of helemaal opnieuw toekennen. Als je noodgedwongen moet stoppen met je studie, kunnen we je studentenreisproduct en eventuele aanvullende beurs omzetten in een gift. Ook als je geen diploma hebt gehaald. Heb je een basisbeurs gekregen, dan wordt ook die een gift.

Duurt je studie langer door een bijzondere omstandigheid? Neem dan contact op met je studentendecaan. Die beoordeelt of je in aanmerking komt voor een speciale voorziening en welke voorziening het beste bij jouw situatie past.

Kijk voor meer informatie ook op www.duo.nl

Can only adults have Tietze?

Although most patients with Tietze Syndrome are 35 years or older, there are cases known from people as young as 15 years. The Tietze syndrome and Costochondritis  Association, has members in their early twenties.

General

Is the seriousness of the disorder decisive for the attention the disorder gets?

 

From experience, regretfully, the attention that a certain disorder gets from the medical world is determined by the number of patients with a certain disorder and not by the seriousness of the disorder. In short a serious disorder like Tietze, but with relative few patients is a reason for doctors to ignore it. Quantity above quality? Unfortunately a fact. It is about money and not about care for the patient. Not very nice but that is the reality.

Is Tietze a chronic disorder?

 

Tietze does not become chronic for every patient, but for many it will. According to the medical profession Tietze is not a chronic disorder. Insiders (patients) do know better. Remarks by "experts" like "it will heal by itself" and "learn to live with it" are unworthy for medical practitioners. Chronic means  that the symptoms persist for at least 3 months. The disorder does not cure and will persist  and be active for a long period. This  last aspect is precisely the case with  the chronic form of Tietze.
For more information about this we refer to the page about Tietze and Costochondritis on our website.  

 

Is Tietze a rare disorder?

 

According to TNO, Rheumafonds and Ieder(in)- the central organization for patient support groups- and medical practitioners, Tietze is a so called rare disorder.

To this date,  no formal research has been done on Tietze as the disorder is rarely diagnosed. Prof. Dr. Rini Geenen from the UMC Utrecht did research the mental disadvantages from Tietze and made suggestions for treatment therapies. In medical publications you will find little about Tietze Syndrome.

Definition for rare diseases or disorders:

A disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2000

Rare diseases are serious, often chronic and progressive, diseases. For many rare diseases, signs may be observed at birth or in childhood. However, over 50% of rare diseases appear during adulthood.

They can be genetic, hereditary or chromosomal by nature, but can also brought on by external factors.

Can flavour enhancers (e.g. E261) make the Tietze Symptoms worse?

There are instances known where this is indeed the case. As with so many other Tietze questions, this is not yet scientifically  researched or proofed. We therefore welcome any feedback on this matter from Tietze patients.

What is Fibromyalgia?

Is group of medical conditions of which one of the characteristics is chronic widespread pain in muscle tissue  and other weak tissues without a clear indication of an infection and also comes with extreme tiredness. When the pain in felt in the chest area, the symptoms are very similar to Tietze Syndrome, however extensive examination will rule out  Tietze to be the cause. X-rays and blood test will not show any thing abnormal. Patients very often end up at a Rheumatologist or a department for chronic pain treatment. The cause for this disorder is unknown. A possible explanation is that it is a reaction of the body on unprocessed psychological trauma. This disorder has, because of its character a profound negative effect on the patient's life. Some patients have benefited from Chakra Therapy. The idea behind this is that this therapy will (re)open the blocked energy fields (chakra's).

What is a Hypochondriac?

 

A hypochondriac is a person, with an excessive pre-occupation with his/her health or body functions. For the wrong reason some medical practitioners consider Tietze and/or costochondritis patients hypochondriacs.  By doing this, they actually show that  they are too lazy or don't care to further investigate. They trivialize the problem, with the result that the patient  is left with many questions and no treatment. Such medical practitioners can better be avoided. Employers, friends and sometimes even close family members can be guilty of this behaviour as well.

Is Tietze Syndrome or Costochondritis a hereditary disorder?

There are no results known from medical research whether Tietze and Costochondritis are hereditary. However,  the many reactions we receive from patients show that Tietze does occur often within the same family. Although there are many factors that could  play  a role in causing this disorder, there is  some reason to presume that there may  be a factor of hereditary in play, however this has to be proven yet.

Which therapy is the most effective?

There is not a clear answer for this question. Everyone reacts in their own way on different therapies. Some get little result from injections, physiotherapeutic treatments or medication and are send to special centres for treatment of chronic pains. Without giving any judgement you can read some more on  a number of therapies where other patients had more or less results. Below a few tips to keep in mind in daily life.

  • Much exercise will result in less calcium deposit on your bones.
  • Daily exercise and paying attention to your posture will reduce the pain.
  • Much strenuous exertion will make the condition worse. Therefore don't exert too much and don't lift heavy objects.
  • Identifying stress factors and trying to reduce them can help to lessen the pain.
  • A peaceful and quiet life will have a positive effect in reducing the frequency of the Tietze attacks.
  • Physio therapy, Chinese acupuncture, Manual extraction therapy, Reiki treatment, yoga to get a better posture and breathing technique are all kind of therapies that have been working for some Tietze patients.

Why do Antibiotics not work?

Antibiotics are only working in cases of bacterial infections. With Tietze there is no bacterial contamination. Blood tests have not shown traces of bacterial infection. Anti inflammatory drugs are frequently confused with antibiotics. Anti inflammatory drugs will block the growth and reduce an infection. Therefore these can be effective for some patients.  Thus penicillin has no impact because it is a antibiotic. Aspirin, Ibroprofen etc. can sometimes be effective because they are  Anti inflammatory drugs.

Which medicines are most effective?

Everybody has their own specific pain symptoms and has a different reaction to medicines. Some have benefitted from 5 paracetamol tablets, others take naproxen (Aleve), acetaminophen (Tylenol), ibuprofen (advil), anti inflammatory drugs (Neopren), muscle relaxants, anti-depressives or other anxiety, stress and relaxation drugs like Diazepam or homeopathic relaxers.  And some patients have  been given prescriptions for Diclofenac (50 or 75 mg) and Diclofenacnatrium (50mg) or Fentolin (against Exercise-induced asthma) or were injected with cortisones near the painful area's. Many women benefit from prostaglandin blockers  before and during their period.

From the above one can see that there is not a unambiguous  answer to this question. Doctors do not always  immediately recognize the symptoms or make the right diagnosis. With the best intends they try all sorts of treatment. So if you get a medicine that seem to work, stick to it as it appears to suit your specific condition.

 

Can other cartilage joints be affected by Tietze?

Although not yet proven, there seems to be a relation between typical Tietze cartilage infections and pain in other cartilage joints in the body. There are known cases from similar pain symptoms in the shoulders, neck, hands and fingers.

More information can be found on the  Signals and Symptoms.

Meer hieronder vindt u op onze pagina Signalen en syptomen op onze website.

The disorder is not malignant or life threatening. What does that mean?

Tietze is not malignant or life threatening, and you will never die from it. Some doctors interpret this as "easy to live with". It should be clear that this is certainly not the case.

Do injections with cortisones on painful areas work?

Various people react different on this type of treatment. The injections will reduce the pain for a period, but it is not a cure. In most cases not enough significant positive effects have been observed.

How can I reduce or avoid the pain?

As mentioned earlier, there is no adequate treatment for Tietze available. Various patients react different on types of treatment and pain management. What works for one person, could be partly or complete ineffective for another. Only when you have identified the factors that caused pain, you can try to control these to improve your condition.

A simple but time consuming way to do that is by keeping a diary. Speak with your GP  and physio therapist about your observations and try to find ways to  prevent escalation.

In general, rest is the best medicine. Warm and cold compresses on the painful area's can be helpful too.

Do the symptoms get worse when in stress?

Yes, the general assumption is that stress has a increasing negative effect on the disorder. The diagnosis does not always disclose what came first. Does stress  and fear cause the inflammation or is Tietze causing stress and fear.

The pain radiates to my shoulder, arms and back. What is the reason for that?

When Tietze syndrome affects either the first rib, or the collarbone, it may affect the "brachial plexus of nerves" which is a network of nerves  located between the neck and shoulders, that provide sensation to the upper limbs. This is why it can cause pain to the shoulder arms and back. and hence the pain down the arm.

I have trouble with breathing. Does Tietze Syndrome affects the lungs??

No, Tietze or Costochondritis do not affect any organs and thus not affect the lungs. When breathing the ribs expand and put stress on the cartilage. When the cartilage  is inflamed, and causes pain, the body will instinctively try to reduce the pain by keeping the expansion of the ribs to a minimum. This can give the sensation that you don't get enough oxygen. This can then result in feelings of panic and hyperventilation, that give the impression that something is wrong with the lungs. A fracture or a pulled rib ligament can  also give that sensation.

Is there a relation between Tietze Syndrome and the oesophagus, stomach and intestines?

If the inflammation is  in the lower ribs the pain can radiate to the abdomen cavity and give the impression that there is something wrong with the oesophagus, stomach  or intestines. Examination  will  show if the pain is  caused disorders to these organs or if Tietze causes the pain. A clear relation between Tietze and disorders of the intestines  has not yet been proved and is  not plausible. In  blood tests  no deviations can be found which indicate to Tietze.

The pain feels like a heartattack? Why?

Although the pain is most often located on the left side of the chest and can radiate to the arms, and therefore has the same indications as a heart attack, examination will eliminate  the heart as cause for the pain.

Is the pain related to the heart?

No, Although the pain is most often located on the left side of the chest and can radiate to the arms, and therefore has the same indications as a heart attack,  but examination will eliminate  the heart as cause for the pain.

Is there a Cure for cronisch Tietze problems

As far as known, there is no cure for this disorder of the cartilage. Although the disorder is not life threatening, the pain that comes with it has a very negative effect on the quality of life. In some cases, reports of good result from treatments of pain, however this is for every patient different. A conclusive cure is not available. Some patients benefit from homeopathic therapies or aspirins. Others require more powerful drugs, injections and physiotherapy and in extreme cases even surgery is needed. You could live a long life in relative good health, but the disorder can stay for all that time and flare up more or less frequently.

How long will the disorder last?

This may vary from person to person. With some people the disorder will disappear over time and never returns, others however, the disorder will follow them for the rest of their life. Often the pain is the beginning very sharp and intense, but over time the pain becomes less distressing.

How do you contract this disorder?

Normally the ribs and the chest and the cartilage constant in motion as result of breathing. The assumption is that the disorder is caused by a too wide expansion of the chest and the ribs  as a result from strenuous activity or exercise, coughing or sneezing, punches on the chest, stress and anxiety. The pain is caused as the cartilage between ribs and sternum gets irritated and inflamed. 

How does the pain feels like?

In the begin phase of a Tietze attack the pain is extreme sharp. The pain can be felt near the sternum but also on other places  near ribs. It feels like someone is sitting on your chest. It is so painful that you hardly can breathe or dare to breathe. There are cases known where people faint from the pain. No wonder that a patient has the feeling he is having a heart attack. Later the pain subsides and a persistent nagging pain will stay for a while.  Many patients also experience painful ribs.With Costochondritis the pain is mostly on the backside. More information on this matter can be found  on the webpage pain.

Are Tietze and Costochondritis a form of rheumatism?

Rheumatism is an umbrella term for more than 100 chronic disorders of the joints, muscles and tendons. Typical symptoms are stiffness and pain caused by inflammations  and/or exertion and limitations in daily activities.

There are three groups of Rheumatism

  • Rheumatoid Arthritis (AR): These are types of rheumatism  where the body's immune system is attacking the joints. This results in inflammation and thickening of the joint capsule. It also affects the underlying bone and cartilage.
  • Osteoarthritis (OA): This is a type of joint disease that results from breakdown of joint cartilage and underlying bone.
  • Fibromyalgia (FM): Is group of medical conditions of which one of the characteristics is chronic widespread pain in muscle tissue  and other weak tissues.

Tietze Syndrome and Costochondritis are related to Rheumatism

How can I do a self test to find out if I have Tietze?

When you have such painful symptoms it is advisable to contact a GP. But there is a simple  test that you can do yourself. Put some light pressure on the painful area. If the pain gets worse, there is a good chance that this is Tietze. However, the pain can also be caused by other afflictions on the ribs like a fracture or a contusion. The hearth lies safely enclosed behind the ribs and will not react on light pressure.

More information on this subject can be found on the page Self diagnose on our website.

Special for women

Do large breast have an effect on Tietze?

This question is not easy to answer. Large breasts are also often heavy in weight. The body will try to find a balance and this could result in a unnatural posture which in turn could  put some extra stress on the ribcage.  Clinical research to see if large breast have an effect on Tietze has as far as we know not been conducted yet, but from feedback we learn that patients who underwent a breast reduction from cup size F or G, have noticed an improvement of their condition.  

The pain increases before and during a period. Why is that?

Prostaglandins are hormones created during a chemical reaction at the site where an injury or other issue occurs. They are unique among hormones because unlike most of the chemical messengers, they are not secreted from a gland, but rather are created at the time they are needed directly where the problem exists.

Prostaglandins control several processes in the body, especially as it relates to the healing process. When tissue is damaged or infected, this group of hormones will create the reactions that cause pain, fever and inflammation, which sparks the healing process.

The amount of prostaglandins increases before a period and is at its highest peak during the period. This large amount causes cramps and pain. Actually these cramps contract the womb and thereby squeeze the blood vessels to reduce the bleeding. These cramps are painful because the muscles are deprived from oxygen. Unfortunately some of these prostaglandins escape to other parts of the body and can cause headache, muscle ache, dizziness, diarrhea and hot flushes. They can also increase the Tietze  or Costochondritis pain. Many women benefit from prostaglandin blockers, which can be taken a few days before the beginning of a period. Ask your GP about it.

Because of the pain I can't stand wearing a bra. What to do?

In this situation one can choose not to wear a bra. But when the situation requires you to wear a bra  there are companies that produce more comfortable bras made from  soft cotton with soft wide elastic bands instead of metal wire.

Ulla Popken fashion, with shops in most large cities have  soft cotton bras with front close from size 42.  The web shop www.klingel.nl has a large selection soft bras.

Other useful websites are

Can the pain in my breasts have anything to do with Tietze?

Yes, this is possible caused by pain radiating from nerves that lie around the ribs. Do consult a GP when there is pain in the breasts.