It’s a crisp October day, and it’s the kind of autumn day that I usually love. But I’m sitting in my doctor’s office, after a week of excruciating, excruciating mouth pain. It’s like I burned my tongue on a hot drink, but I didn’t. My doctor eventually diagnosed me with thrush.
This is a wrong feeling for me. I have seen a lot of thrush, having worked with children for years. My mouth looks completely normal. However, I dictate the antibiotic he prescribes, and I take it. The pain never ends. The medication is not helping. I know I am going into search mode.
A month has passed, and I’m still miserable – but I’m also armed with a theory, so I’m back to my doctor. Tell him I think so Burning mouth syndromeGlossodynia, or BMS, is sometimes referred to as glossodynia. In the United States, it is estimated that fewer than 20,000 cases are diagnosed annually. There are two types of this condition: primary, where an underlying cause cannot be identified, and second, where there is another condition or medication causing it.
There is still clearly nothing wrong with my tongue, but the pain is so intense that I sometimes find it difficult to fall asleep at night. The water tastes like soap. The first time I noticed this, I guess my dishwasher didn’t wash the dishes properly. But I change glasses and still taste the soap. I am trying bottled water to no avail.
The taste varies. Some water sources have a more metallic taste than others, but always, in the end, there is at least a faint taste of soap. I explain all of this to my doctor, and while he admits he’s not very familiar with the condition, it seems plausible. Agrees that after such a long treatment, thrush does not occur.
After about six weeks, the pain is finally gone, and I foolishly think that whatever it was, it was over. A few weeks later, though, I wake up to discover she’s back … with a vengeance.
Ultimately, I will stop experiencing these periods of “calm”. The condition becomes dire. Still acting periodically. It starts with severe, burning pain. Ultimately, one side of my tongue (always in the same place, always on the right) will start hurting me badly, as if I had bitten it hard recently. Then, at the end of the cycle, my tongue feels super smooth, as if I no longer have the taste buds on it. This is when the pain will be at its lowest, but not completely gone.
After 18 months of misery, the dentist will officially diagnose the condition. It is not uncommon for a diagnosis to come from a dentist. They see more BMS patients than most doctors.
One day, I eat a sandwich and I realize it tastes like … fish.
It’s nice to have an official diagnosis, but I quickly realized that it didn’t matter much. There is no cure. There is no real cure. It is advised to avoid acidic and spicy foods (foods that tend to taste better as this progresses).
Sometimes Orajel is the only thing that provides enough – albeit temporary – rest to allow me to sleep, talk, or eat. I try all sorts of mouthwashes, but the most they offer is an anesthetic effect similar to Orajel, and ironically many of them burn so much that they just don’t deserve it.
Brushing my teeth became a huge challenge. Toothpaste causes burns, but even a wet toothbrush with nothing adds to the pain. I’m starting to dread going back to the dentist after getting a full vaccination against COVID-19 because I know the things in my mouth are not going to be good.
Eating becomes a nightmare. I never know how something will taste like from day to day. Sometimes even within a day. One day, I eat a sandwich and I realize it tastes like … fish. It’s pork and cheddar cheese with mayonnaise, so this one is a little disappointing. It takes some experimenting to realize that the combo of ham and mayonnaise causes this fishy flavor. Whether the food alone or combined with other foods taste good in the end, this will pass and the natural combo will taste again. But I know now that he might be back to tasting fish (or otherwise terrible) at any time.
I know that any food or drink, at any given moment, can taste completely bad. Sometimes the food has absolutely no flavor. The first time this happens after the start of a pandemic, I am grateful that I have had it before, because loss of taste is a symptom of COVID-19.
Everything that hits my mouth becomes sore. Talking, eating and drinking sometimes. The pain is often really bad in the morning, because I have a very dry mouth (thanks to psychotropic medication) and my mouth can dry out overnight to the point that my throat is sore. While dry mouth and some medications can be a trigger for secondary BMS, it appears unlikely in my case because I have had dry mouth for more than a decade.
The most likely explanation is that I have Hashimoto’s disease, which is an autoimmune condition where your body attacks the thyroid gland. It did not respond well to my sleeve gastrectomy in March 2018, and my thyroid levels have been dysfunctional since then. Hypothyroidism can be a trigger for BMS.
There will be nights when I have to stay awake until I’m literally unable to because if I just try to sleep, the pain will keep me awake and my anxiety will increase. Some days I have to force myself Just eat something Because the pain combined with the unpredictability of the taste of anything at any given time is overwhelming. I would be totally exhausted and frustrated by this, and the food would feel like a lot of work.
I will find myself ignoring calls from my best friend or mom because talking is so painful (and I’m originally from New Jersey. I really like to talk). I will find myself explaining it to them, hoping that they understand how ridiculous it sounds, even to me – the person who lives with him. I will look online for support, but even sites like the mighty They don’t have the resources or communities of their struggling mates. I began to feel very isolated and lonely in dealing with it.
I will remind myself that I am used to chronic pain. After all, I’ve been suffering from fibromyalgia for nearly two decades. She had developed endometriosis, which caused so much pain that the drugs could not even touch her. Unfortunately, the truth is, BMS is a completely different experience. he’s crazy. I will soon find myself fighting the urge to engage in different types of self-harm, just to distract myself from the pain, or just to experience a different pain. Instead, I’ll pick my own skin – an obsessive-compulsive disorder that I’ve struggled with since my teens, a behavior that will be made worse by BMS (and the pandemic won’t help).
I wish I could say it’s gone, and that I’ve found something to remedy it, it’s “better”. The most I can say is that I have adjusted.
I find myself struggling with suicidal thinking for the first time in a very long time. Thankfully, I won’t become actively suicidal, but I’ll think about it. I don’t want to die, but at the same time, on some really bad nights, I find myself thinking that death means the pain is over. There are times when that just doesn’t sound like such a terrible trade-off. I realize I lived with vibro pain for probably a decade before I felt this way. BMS took me to that dark place in under six months.
As I write this, it has been nearly 30 months of living with BMS. I wish I could say it’s gone, and that I’ve found something to remedy it, it’s “better”. The most I can say is that I have adjusted. There are days when the pain is really bad or things taste weird or particularly bad, and I just want to cry out in frustration. My thyroid gland is still down.
I hope my last modification is the ‘adjustment’, and it finally settles for over five minutes. Perhaps, I dare hope, if that happens, the BMS will disappear as soon as it happens. But other times this hope is too great to allow.
The epidemic has helped in perspective, in terms of suicidal thoughts. It made me more aware that I didn’t want to die, and that there was so much more that I wanted to do. So I fight during my darkest moments. Keep going.
Some days are utter nonsense, yeah. But I know they wouldn’t all be this way. I know there are beautiful, wonderful, and amazing days yet to come that I would never want to miss, and I also know that on those days a ham and cheese sandwich might taste like fish. I just choose to believe it in these magical moments, even Which – which It won’t look awful.
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