WHAT IS R-CPD?
R-CPD is a rather particular pathology, which is the inability to burp, which is very little known, especially in France. Contrary to what one might think, it is not at all harmless, it is a rather disabling pathology because it is painful during attacks, and uncomfortable the rest of the time. There is starting to be a lot of information in English but not much in French, that is why I am sharing my experience with you to make this pathology known in France and in French-speaking countries (with English translation available to help more people).
R-CPD stands for Retrograde Cricopharyngeal Dysfunction, and it is a dysfunction of the cricopharyngeus muscle, which is located in the throat. Normally, when this muscle is working properly, it relaxes to allow food and liquids to pass into the esophagus, then it contracts afterwards, and if air goes back up into the esophagus, enough pressure builds up for this muscle to relax again, allowing this air to escape through the mouth: this is called burping. This is not the case for people with R-CPD, this muscle works in one direction, but not the other, so it works for swallowing but not for expelling air, which blocks it in the esophagus and causes painful pressure because the esophagus is trying to expel it but cannot because the muscle does not relax.
For people in whom this muscle works properly, you probably don't realize it, but you burp, more or less small, after drinking or eating or during your day, which people with this pathology cannot do, and even without drinking sodas or carbonated drinks, even eating normally and drinking only water, air accumulates during the day, because swallowing food, drinking water, and even talking, all these things cause you to swallow air.
We swallow an average of 2L to 4L of air per day without knowing it, and if you do not suffer from it, it is because a large part of this air is necessarily expelled by burping, whereas people with R-CPD accumulate all this air throughout the day, creating painful contractions in the esophagus and excessive pressure which over time can create distension of the esophagus and abdomen.
SYMPTOMS
Symptoms of this condition include: inability to burp, loud and painful gurgling sounds (due to air moving and getting stuck at the top of the esophagus), bloating and chest pressure, swollen belly, significant flatulence. Other symptoms are possible and quite common such as: nausea, hyper-salivation, painful hiccups, stomach aches, acid reflux, shortness of breath (due to the volume of air trapped in the abdomen which gives less room to be able to inhale air), difficulty or inability to vomit for some people, and anxiety and social stress for some people as well.
Why anxiety and social stress? Because when the air gets stuck in the esophagus it is painful but it can also be very noisy because of the gurgling, it is really big gurgling and there can be a lot of it, it can arouse curiosity and judgments from other people because if they hear this symptom and we explain it to them, they do not necessarily understand since it is not "common", and we often come across as weird people or they can laugh about it, we want to avoid this kind of situation as much as possible, and so some people may tend to stay home alone to avoid them, and others will anticipate going out and not eat or drink at all for hours before going out. In addition to the pain it is complicated socially.
For my part, I had all the symptoms, the most disturbing for me, in addition to not being able to burp, were the pain in the esophagus, the noisy gurgling, and the acid reflux, these symptoms were a plague in my everyday life. I had this pathology since I was a child, from memory I had no memory of having burped one day. I remember when I was a child, I refused to drink fizzy drinks for this reason, but where it started to handicap me was in adolescence. When going out with friends, everything that was soda, even without bubbles, and sweets, made me suffer a lot. Then later came the evenings and aperitifs, which made me suffer too, so I avoided them as much as possible. Knowing that even by eating normally and drinking only water, I had symptoms too, but it was worse if there was abuse.
METHODS OF RELIEF
I have read comments from people who were able to vomit normally, and who use this technique to evacuate the blocked air, the air remaining on the surface above the food, they make themselves vomit long enough to evacuate this air and stop in time. While other people have a lot of difficulty vomiting, some are even incapable of it, the muscle remaining blocked for this mechanism too. I was one of the people for whom it was very difficult so I did not use this technique, and in the rare cases where I vomited it was very painful because it forced the passage very hard.
Another relief technique when air is blocked at the top of the esophagus is to lie on your back, this relieved me instantly but I had to stay lying down long enough to be relieved in the long term, because if I got up after 5 minutes it started again, it took at least 1h30 or more, the time for the air to go down far enough in the digestive system and not come back up.
That's why in the morning when I woke up, after having spent a whole night lying down, it was the time when I had the least air blocked in my esophagus, it started to settle and accumulate during the day. Generally, it started to become really painful in the middle and end of the day, because we swallow air when we eat and drink during the day, and digestion also produces gas. Large meals, too fatty, or even too protein-rich, carbonated drinks, sugars, sodas, and obviously alcohol, made my symptoms much worse, but even when eating healthily the symptoms persisted every day.
DISCOVERY & TREATMENTS
I saw several doctors and specialists, I had several tests without conclusive results, the doctors always said that it was just stress, thinking that not burping was not worrying, because they did not know the pathology. Around me it was the same, I was just the weird girl who never burped, so I grew up feeling alone with this suffering, not knowing myself what I had. It was only when I was 25 that I discovered what it really was, by reading an article that had been translated into French, which dates from 2018, by a man who had been treated for the same pathology in Manchester. What guided my research in English this time, I learned that this pathology was discovered in 2015, and was studied and named R-CPD by Dr. Bastian and his team in Chicago.
They offer a treatment based on Botulinum Toxin, also called Botox, which is injected into the cricopharyngeal muscle to relax it, allowing the ingested air to escape. The botox diminishes over time so the muscle contracts a little more each day, and leaves more control for future burps, which teaches the patient to burp. The injection works in many cases and seems promising, some people keep this ability to burp even when the botox wears off and only have one procedure. But there are also some people where the symptoms come back when the botox wears off and who need a second injection, or more, it all depends on the case, we are all different about sensitivity to botox. I read many comments on Reddit and on a Facebook group, from people who have the same syndrome, people all over the world and also French people with whom I spoke, I saw that I was not the only one with this pathology. Now it is just beginning to become known in France, some French-speaking ENT specialists know and treat this pathology.
The second intervention that exists but is less practiced to treat R-CPD, is a myotomy of the cricopharyngeus muscle, which consists of dividing about 80% of the muscle using a laser, intentionally leaving 20% of the posterior fibers intact. This new intervention is more recent, it can be performed on a patient who remains insensitive to botox, for example when the symptoms return even after several injections, but being irreversible it is less practiced and less proposed.
A third solution, which does not work for everyone but is worth trying, is the Shaker exercise that can be done alone at home, which is a series of head lifts while lying flat on your back. There is a part of the exercise where the head is held up for 60 seconds followed by a rest. And another part of 30 repetitions of alternating head up/head on the floor movements. These exercises are used to increase the tone of the neck and throat muscles, and to increase the diameter of the opening of the upper esophagus, and they are normally prescribed for swallowing problems. This technique requires a lot of rigor and motivation, because it must be practiced every day, and it can take several months before you see results, if there are any results... It is a less certain technique, but I have still read a few comments from people who have rehabilitated their muscles on their own with these exercises and who were able to burp afterwards, including a Frenchman with whom I spoke and who managed to heal himself like that in five months, and myself who has now experimented with these exercises which have contributed to my rehabilitation, I learned to burp in a few months as well. Find the details of my rehabilitation here.