My experience with R-CPD
Draft
If you're somehow reading this and you don't know me irl please ignore
Before I start the actual post, I want to preface that I’m not as comfortable discussing this as I would like to be. I’m not entirely sure why that’s the case, but it’s something I feel like I need to overcome, if for no other reason than self-validation. Also it’s kinda gross and deals with general bodily functions, so like, uhh, proceed at your own risk.
Last year, I learned that I’ve had a lifelong condition called retrograde cricopharyngeal dysfunction (R-CPD), or, as it’s more commonly known, “no-burp syndrome”. Yes, you read that correctly. I have gone pretty much my entire life without ever burping. That may sound like a blessing, or maybe just a fun little icebreaker fact about me, but from firsthand experience I can assure you it is not.
See, when we swallow food or a drink, we also swallow a bit of air along with it, which takes up space in our stomach. Our body gets rid of that excess air via belching, a process which involves the cricopharyngeal muscle. This muscle relaxes when we swallow food, and again to allow air to be expelled via a burp. For those with R-CPD however, the muscle is unable to relax to perform that second function, which means that all that air we swallow gets trapped in our digestive system. This causes an immense amount of pressure and discomfort in that area, leading to bloating and nausea that is only relieved once the air slowly makes its way through the digestive system and out the other end via flatulence. The biggest symptom of this condition (aside from the obvious) is a “croaking” or “gurgling” noise coming from the throat. (I’ve always assumed this is the air struggling to escape the esophagus, but I don’t know if that’s scientifically confirmed or not.)
Note the size of the air bubble in this x-ray of someone with R-CPD. It may be difficult to imagine that the inability to burp would be as painful as it is, because it doesn’t feel like our bodies swallow that much air when eating or drinking. This visual really helped put things into perspective for me when I would start to doubt myself and think I was overreacting.
Luckily, there is treatment, which I have recently undergone. It involves injecting the cricopharyngeal muscle with botox, which essentially forces it to relax. From here, the patient needs to actually learn how to burp on their own, and practice doing so to ensure they can retain the ability before the botox wears off. Effectiveness and dosage varies from person to person; some people report burping after the first few days, while others might need multiple procedures. Currently I’m one month into my second procedure, and while I have successfully burped, I cannot reliably do so, and am still learning to control my newfound “abilities”.
R-CPD is a pretty recent discovery by medical standards, being first legitimately recognized/named in 2019. Because of this, we don’t have a lot of hard scientific facts about it, and many doctors haven’t even heard of it, mine included. I can tell you my own subjective experience with it, though, although keep in mind that I’m still technically in the middle of the treatment process.
Before being treated, on a day-to-day basis, I’d have to be very careful about when and where I eat meals, because I know that afterwards I’ll need to make sure my stomach is relaxed so I can minimize the pain. This means trying to avoid standing or sitting upright as much as possible. Best case scenario is that I’m home, where I can allow myself an hour or two of lying down to try and relieve the pain enough to continue my day. During school though, especially grade school, that’s not an option; instead I became an excessive sloucher, because that’s the closest you can get to lying down in one of those uncomfortable-ass plastic chairs.
Having your digestive system filled with air like that doesn't prevent you from getting hungry though. Sometimes I would find that I’m simultaneously bloated and starving, which is a bizarre and uncomfortable feeling. The way I eventually learned to quell it is to eat while lying down. And I don’t mean like propped up leaning against the headboard, (because that’s still engaging your stomach muscles) I’m talking fully parallel to the ground. My dinner on many nights would be one full sleeve of saltine crackers I’d eat while in bed, because the plastic sleeve they come in made them easy to grab while lying down without making a (huge) mess. My diet in general was (and still is) extremely out-of-whack. Food served in small, bite-sized portions tends to go over the best for me, which meant I stuck with chicken nuggets and fries long after most kids grew out of them.
One of the biggest factors that led me to look for a solution was my job. As far as minimum wage jobs go, it wasn’t actually that bad, but it did require me to talk to customers for basically my whole shift, which absolutely destroyed me every day I had to work. I would only have a few hours of comfort before the pain would start to kick in, and I knew I had to save that uptime for work, which basically meant I’d have to reserve an entire day even for a short 4-hour evening shift. The long shifts were worse though, because eating meant intaking more air and speeding up the nausea, so I would usually have to bring small snacks to survive off until my shift was over and I could finally eat a legitimate meal. If said shift started at like 12 or 1, I’d usually have to eat lunch directly before, which was a huge gamble—afternoons were usually slow enough for me to manage, but it didn’t always pan out that way.
Keep in mind that until last year, I didn’t know what this pain even was or what was causing it. I used to think it was some sort of anxiety response, but I was never fully satisfied with that answer, since it didn’t always occur during situations where I’d be anxious. Maybe it was just laziness, or maybe I just had an unhealthy diet. (Okay, I knew I had an unhealthy diet, but like you know what I mean.)
Once I got medicated for ADHD in 2022 and started taking up productive hobbies that I genuinely enjoyed (productive basically meaning more than just consuming a form of media), I slowly began to realize just how inconsistent these answers were. I got really frustrated because I could only work on music for 3-4 hours at a time before having to break out of the creative flow to go lie down, and that’s when I first began trying to figure out exactly what this was.
I started taking notes on the pain: when it showed up, where/how it hurt, what I was doing that might’ve caused it etc. I discussed it with my therapist. I cycled through different anxiety meds to see if any of them helped. I started taking different probiotics and magnesium supplements, since it seemed like it might’ve been a gastrointestinal issue. (R-CPD is technically an ENT condition, since it deals with a muscle in the throat. This tripped me up (along with many others) when looking for answers, since the pain is in the digestive system, and it usually occurs after eating.) I even went to physical therapy, on a hunch my doctor had about one of my ribs poking into my stomach. Nothing ended up working, though, and it kind of fell on the backburner while I continued to make my way through college.
One day this past summer, though, I went out to a Panera, got a bagel and some lemonade tea drink thing, (not the insane one that kills you, thankfully) and got out my laptop to get some work done. About two hours later, I felt so nauseous that it was genuinely a struggle to drive myself home. (I’d barely even made a dent in the lemonade; I continued sipping on it for like three days afterward and still never finished it.) I ended up lying on my bed like I normally do to try and relieve the pain, but for some reason that was the last straw for me.
I’d tried googling my symptoms before, but it was always hard to even describe where my pain was. This time though, I was so furious about not being able to do something as bog-standard as doing work at a cafe, and I didn’t really know where to direct that anger, so I just began frantically opening a bunch of tabs on my browser looking for any conditions that might be related. Eventually I saw the acronym R-CPD in like a Quora post or something, so I opened a new tab, looked it up, and… I don’t know if I can properly describe how validated I felt in that moment. I genuinely cried reading forum posts from people who were in the same spot I was, who had struggled with the same symptoms and experienced the same pain their whole lives, and who had finally found the answer after years and years of searching.
The thing that really convinced me that this was what I’d been looking for all this time was, strangely enough, the subreddit r/noburp. (They’re actually mentioned by name in not just one, but two official medical papers on the subject. I think they’re indirectly referenced in the original 2019 paper too, which is pretty wild.) In lieu of widespread medical knowledge, and because so many people discover the condition through the internet, they maintain a community-run list of doctors known to provide treatment, as well as a list of the most common symptoms people on the forum have reported. Most of said symptoms were the same as what was reported on official documents, but apparently there were a number of people with R-CPD that reported “excessive salivation,” which was something I never thought would be related to the stomach pain at all. I figured I was just constantly dehydrated or something, even though I basically only ever drank water. (And a lot of it at that) After seeing that though, I realized that I did it less because I was thirsty, and more because it allowed me to talk without sounding like I was permanently chewing bubble gum.
I’m still sort of in the process of rediscovering my physical, mental, and emotional limits; I’ve been so averse to social gatherings and large events for so long because of R-CPD, but now that I’ve finally had the procedure done and gotten a taste of what life is like without it, I’ve begun to realize that I’m not as much of an introvert as I used to think. Socially awkward, sure—both this and the pandemic have put me extremely out-of-practice—but I’ve come to genuinely enjoy passing interactions with strangers and classmates now that I’m not hyper-conscious of my insides filling up with air for every moment my mouth is open.
I’ve also been reassessing my relationship to food and drinks. Obviously having soda with this condition is a recipe for disaster, and to be honest I still think most carbonated drinks are a bit too strong for me, but I recently discovered I quite enjoy fruit tea and mocha—two things that would’ve previously knocked me down for the rest of the day.
It’s not something I could’ve controlled, but I can’t help but wish I’d found out about R-CPD sooner. I graduate this May, so my time in school is almost over, and it really sucks knowing that I had to spend most of it lying on my bed in pain when I could’ve been making friends, going to clubs (of both the extracurricular and nighttime varieties), or just exploring the city. I have been and will be trying to make the most of my last few weeks here, but it’s just kind of sad knowing that I’ve forever missed out on the College Experience™. And the High School Experience™, for that matter. Imagining all the friends I could’ve made/kept if I didn’t have this condition getting in the way; I get a little teary-eyed thinking about it.