Living with the Tietze Syndrome (Costochondritis)
What is Tietze?
The Tietze syndrome was first described by Alexander Tietze in 1921 (Dr.L. Knott, 2013). He stated that Tietze is an inflammation of the sternum and cartilage where the ribs are attached to the breastbone. It causes severe pain within the chest area and has a lot of similarities with a heart attack, which is the main reason why the patiënts end up at hospital. Tietze shows visible signs on the body like most inflammations, the signs are:
- A visible and warm swelling and redness of the skin at that certain area.
The other signs of Tietze are:
- Pain in the sternum and/or ribs
- The pain gets worse when you apply pressure to the chest
Other than the visible signs there isn't any way to find Tietze within a human body. Even scans and blood samples don't show any signs of this disease.
So how do you know you have Tietze?
To get the diagnosis of Tietze isn't a simple task. First a lot of things have to be checked in order to say you have Tietze. In most cases the first thing to check is your heart because of the similar pain. Besides that they will most likely check your entire health status and see if there is any sign of an other condition. This will most likely be checked by a cardiologist or a family doctor. When all those things have come back negative the next choice of help will be a rheumatologist who will look further. To be certain there isn't another disease the rheumatologist will look for signs of a disease called: Ankylosing Spondylitis (formerly known as Bechterew).
Ankylosing spondylitis is a disease which causes your bones and joints to get rooted to each other. They also called it the ''bamboo spine'' because of the way it looks when the spinal cord is completely rooted. -http://en.wikipedia.org/wiki/Ankylosing_spondylitis-
The reason that they look for signs of ankylosing spondylitis first is because that the disease can take severe forms and can make you immobile. Tietze on the other hand doesn't have severe forms like that but that doesn't mean that the pain can't make you handicapped. So after the results of the blood samples are negative once again, you will most likely have Tietze.
Syndrome of Tietze (English Sub)
The beginning of my disease
I was diagnosed with Tietze this July 2014 at the age of 23, but I had my first inflammation in October 2013. Looking back the signs of Tietze were also there in my youth, specifically when I went swimming. I always had pain in my chest and it became hard to breath when we went swimming for a couple of hours. Back then we just thought it was my bronchitis and we never really tried to figure out where it came from.
In the summer of 2013 I started having aches within my ribs when I went walking for a while. At first it stopped when I took a break but gradually I had to take longer breaks for it to go away. I never really gave it thought because I thought that I was just in bad shape. After a while I noticed I couldn't lay on my chest anymore because it would hurt me. The pain also came more frequently and even when I wasn't doing anything. Until somewhere in October I was able to handle the pain until one night the pain became so severe it felt like I was having a heart attack. So we rushed to the ER and when we arrived they checked my pulse. I had a blood pressure rising through the roof and my heart went like a 170 beats per minute. But no signs of a heart attack, so they figured I had a panic attack.
I went home with a tranquilizer so my blood pressure would sedate and I would become calm again. The pain on the other hand didn't go away and only got worse. So the next day I went to the family doctor and he prescribed some pain killers and that was that. The pain stayed and the panic attacks became worse and worse, it really made me feel depressed. I didn't really knew what was going on inside my body and I completely lost trust in it. So every sign of pain or the feeling of a small lumb made me think I had some horrible disease. This really drove me nuts and my school work was really suffering from all this.
The way to getting a diagnosis
In November 2013 I had enough, after several weeks of severe pain I couldn't handle it any longer. I wanted to know what was going on and why I felt so much pain. So first I spoke to my physical therapist and we talked about the symptoms and what we could do. However he didn't really knew what to do other than some breathing exercises and posture training. So I started searching on the internet looking for diseases which fitted too my symptoms and the first that popped up was: ''Tietze Syndrome''.
With this information and my physical therapist behind me, I went to our family doctor and asked for a reference to a rheumatologist. Not just some rheumatologist but the best of the best hospital in the Netherlands: ''the sint maartens clinic'' in Ubbergen (near Nijmegen). They specialise in everything which has to do with Rheuma. So I went there and I was in and out within 30 minutes. He took a blood sample, we spoke about the symptoms, he checked my health and I was send to another hospital for a scan. So a few weeks later I went to the other hospital for a scan which shows the entire skeleton and organs. The result of the scan: negative. At first when I heard the result, I was shocked because I thought there still wasn't an explanation. However the test only was to see if had ankylosing spondylitis, so the test came with the diagnosis: Tietze. This result came 5 months after I first went to the clinic.
So with the diagnosis in my pocket, there was another thing to take care off: medicines. There isn't a specific medicine for Tietze so the doctor prescribed medicines used for ankylosing spondylitis because it works at the right area. Besides that I have stomach protectors , tramadol and metoprololtartraat. The tramadol and beta blocker are for incidental use.So far the medicines to there job and the pain is less but not gone.
What to do?
So I had my medicine and my diagnosis, but what's next?
Next came the time to adapt to my new situation and the restrictions I suddenly had. There are a lot of things I suddenly can't do without being physically punished afterwards. Just simply cleaning my room made me burst in the tears at night because the pain would become too hard to handle. Suddenly I had to learn how to say no to things because I just didn't have the energy left to do it. I also had to inform my school about my disease and all my other classmates. But that fell really hard on me because it felt like admitting I was weak.
So after the first bunch of people that I told about my disease came the fact that I had to accept it. That was probably the hardest part of it all, because that meant accepting me and learning to trust my body again. Because all those months of pain without a real cause made me quite the hypochondriac.
After a while the hypochondria started to sedate and became less of a problem, from time to time it shows up when the inflammation gets worse. So far I have learned to live with it but admitting that I have reached my limit still is really hard for me.
But the experience itself made me stronger in knowing what I want.
So there are many things to do and know about Tietze, so here is some tips. First of all some tips when you think you have Tietze:
- Go to your family doctor, BEFORE it gets out of control!
- Try to write down what you feel and bring it to the consult with your family doctor
- Search for a good rheumatologist
- Get help from a physical therapist
When you have Tietze, there were a few things which helped me:
- Meditate: It really helped me to understand my body better
- Yoga: for better posture and some pain relief (although you might not think so at the start)
- Find a way to relieve your emotions and fears like drawing or singing for example
- Learn to say: '' No!''
- Inform people who you see at daily basis so they know why you have off-days.
- Don't give up when medicines won't work entirely
- Keep searching for help
- And most importantly: ''Talk about it!''