It’s a crisp October afternoon, the kind of autumnal day I typically love. But I’m sitting in my doctor’s office after a week of inexplicable, excruciating mouth pain. It feels like I’ve scorched my tongue on a hot drink, but I haven’t. My doctor ultimately diagnoses me with thrush. This feels wrong to me. I’ve seen a lot of thrushes, having worked with infants for years. My mouth looks completely normal. Still, I fill the antifungal he prescribes and takes it. The pain is endless. The medication isn’t helping. So I go into research mode.
A month passes, and I’m still miserable ― but I’m also armed with a theory, so I return to my doctor. I tell him it’s burning mouth syndrome or BMS, sometimes called glossodynia. There are two forms of the condition: primary, in which no underlying cause can be determined, and secondary, in which there’s another condition or medication that causes it. In the U.S., it’s estimated that less than 20,000 cases are diagnosed per year.
NWater tastes like soap. The first time I noticed this, I thought my dishwasher hadn’t rinsed the dishes properly. But I changed glasses and still tasted soap. Nothing ish my tongue, but the pain gets so intense that I sometimes find it hard to sleep at night. I try bottled water, to no avail.
The taste varies. Some water sources taste more metallic than others, but always, in the end, there is at least a faint taste of soap. I explain all this to my doctor, and while he admits that he’s unfamiliar with the condition, it sounds plausible. He agrees that after this long, plus treatment, it’s not thrush. After about six weeks, the pain finally disappears, and I foolishly think that whatever it is, it’s over. A few weeks later, though, I wake up to discover it is back … with a vengeance.
Eventually, I will stop having these periods of “remission.” The condition becomes relentless. It still behaves cyclically. It starts with intense, burning pain. Eventually, one side of my tongue (always the same spot, always on the right) will burt intensely, as if I’d badly bitten it recently. Then, at the end of a cycle, my tongue feels super smooth, as if I have no more taste buds. This is when the pain will be the lowest, but it’s still not entirely gone.
After 18 months of misery, my dentist will formally diagnose the condition. It’s not uncommon for a diagnosis to come from a dentist. They see more BMS patients than most doctors do. One day, I’m eating a sandwich and realize it tastes like … fish. It’s nice to have a formal diagnosis, but I soon realize it doesn’t much matter. There’s no cure. There isn’t even a treatment. I’m advised to avoid acidic and spicy foods (the very foods that will tend to taste the best as this progresses).
Orajel is sometimes the only thing that offers enough relief ― albeit temporary ― to let me fall asleep, talk, or eat. I try all sorts of mouthwashes, but the most they offer is a numbing effect similar to Orajel, and ironically many of them burn too much to be worth it. Brushing my teeth becomes a significant challenge. Toothpaste burns, but even a wet toothbrush with nothing on it intensifies the pain. I dread returning to the dentist after being fully vaccinated against COVID-19 because I know things in my mouth will not be good.
Eating becomes a nightmare. I never know what something will taste like from day tto day, Sometimes even within a single day. One day, I’m eating a sandwich and realize it tastes like … fish. It’s ham and cheddar with mayo, so this is somewhat problematic. It takes some experimenting with recognizing that the ham and mayo combo is causing this fishy flavor. Either food alone or with other foods tastes fine. Eventually, this will pass, and the combo will taste normal again. But I know by now that it might go back to tasting fishy (or terrible in some other way) at any time.
I know that any food or drink, at any given moment, might taste wholly fucked up. Sometimes food has virtually no flavor at all. This is the first time after the pandemic; I’m just grateful to have experienced it before since loss of taste is a COVID-19 symptom.
Everything involving my mouth becomes painful. Talking, eating, and sometimes even drinking. The pain is often terrible in the mornings since I suffer from severe dry mouth (thanks to my psych meds), and overnight my mouth can get so dry that my throat is sore. While a dry mouth and some meds can trigger secondary BMS, it seems unlikely in my case since I’ve had da ry mouth for over a decade.
THypothyroidism can trigger BMS. he most likely explains that I have Hashimoto’s disease, an autoimmune condition where your body attacks your thyroid. It did not respond well to the gastric sleeve surgery in March 2018, and my thyroid levels have been fucked ever since. There will be nights when I have to stay awake until I can because if I try to sleep, the pain will keep me awake, and my anxiety will run wild. Sometimes, I have to force myself to eat something because the pain, combined with the unpredictability of how anything might taste at any given point, is overwhelming. I will become utterly exhausted and frustrated, and food will feel like too much damn work.
I will find myself ignoring calls from my best friend or mom because talking is just too painful (and I’m originally from New Jersey. I like to speak). I will find myself explaining it to them, hoping they can understand, given how ridiculous it all sounds, even to be ― the one living with it. I will look online for support, but even sites like The Mighty don’t have resources or communities of fellow sufferers. I began to feel incredibly isolated and alone in dealing with it.
I will remind myself that I’m used to chronic pain. After all, I’ve had fibromyalgia for almost two decades. I have had endometriosis, which caused so much pain that even narcotics couldn’t touch it. Unfortunately, the reality is that BMS is an entirely different experience. It’s maddening. I soon will find myself fighting the urge to engage in various types of self-harm, to distract myself from the pain, or to experience a different pain. Instead, I will pick at my skin ― an obsessive-compulsive disorder behavior I’ve battled since my teens, one that will worsen because of BMS (and the pandemic won’t help). I wish I could say it’s gone, that I found something to treat it, that it’s ‘better.’ The most I can say is that I’ve adjusted.
I find myself experiencing suicidal ideation for the first time in a very long time. Thankfully, I won’t become actively suicidal, but I will think about it. I don’t want to die, but at the same time, on some naughty nights, I find myself thinking that death would mean the pain is gone. There are times when that doesn’t seem like such a terrible trade-off. I realized I had lived with fibro pain for a decade before I felt that way. BMS took me to that dark place in less than six months.
As I write this, living with BMS has been almost 30 months. I wish I could say it’s gone, that I found something to treat it, that it’s “better.” The most I can say is that I’ve adjusted. There are days when the pain is terrible, or things taste especially weird or wrong, and I want to cry from the frustration. My thyroid is still screwed up.
I’m hoping my most recent medication adjustment will be “the one” and that it will finally stabilize for more than five minutes. Maybe, I dare to hope, if that happens, the BMS will go away as quickly as it came on. But other times, that hope is too much to allow.
The pandemic has helped with perspective in terms of suicidal thoughts. It’s made me much more aware that I don’t want to die, that there’s too much I still want to do. So I fight through my darkest moments. I keep going.
Some days are absolute shit, yes. But I know that they won’t all be that way. I know there are beautiful, brilliant, breathtaking days yet to come that I do not want to miss, and I also know that my ham and cheese sandwich might taste like fish on those days. I believe that even that won’t seem as awful in these magical moments. Do you have a compelling personal story you’d like to see published on HuffPost? Find out what we’re looking for here, and send us a pitch!
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