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I have ‘burning mouth syndrome’ and it’s even worse than it looks

It’s a cool October afternoon, the kind of fall day I usually like. But I am sitting in my doctor’s office, after a week of inexplicable and excruciating pain in my mouth. I feel like I’m burning my tongue on a hot drink, but it’s not. My doctor eventually diagnosed me with thrush.

It seems wrong to me. I have seen a lot of thrush, having worked with infants for years. My mouth looks quite normal. Still, I fill in the antifungal he prescribed for me and take it. The pain is endless. The drug does not help. So I switch to search mode.

A month goes by, and I’m still miserable – but I’m also armed with a theory, so I go back to my doctor. I tell her I think it’s burning mouth syndrome, or BMS, sometimes called glossodynia. In the United States, it is estimated that less than 20,000 cases are diagnosed per year. There are two forms of the disease: primary, in which no underlying cause can be determined, and secondary, in which there is another condition or drug that is causing it.

There is still nothing wrong with my tongue, but the pain gets so bad that I sometimes have trouble sleeping at night. The water tastes like soap. The first time I notice this, I think my dishwasher did not rinse the dishes well. But I change my glasses and I still taste soap. I try bottled water, to no avail.

The taste varies. Some water sources taste more metallic than others, but always at the end there is at least a slight taste of soap. I explain all of this to my doctor, and although he admits that he is not very familiar with the disease, it seems plausible. It is appropriate that after this long treatment, it is not thrush.

After about six weeks the pain finally goes away, and I foolishly think anything is over. A few weeks later, however, I wake up to find he’s back… with a vengeance.

Eventually, I will stop having these “remission” periods. The condition becomes relentless. It always behaves cyclically. It begins with intense, burning pain. Eventually, one side of my tongue (still in the same place, still on the right) will start to hurt intensely, as if I had bit it badly recently. Then, at the end of a cycle, my tongue feels super soft, like I don’t have any taste buds on it anymore. This is when the pain will be weakest, but it is still not all gone.

After 18 months of misery, my dentist will officially diagnose the disease. 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 realize that it tastes like… fish.

It’s good to have a formal diagnosis, but I quickly realize that it doesn’t matter much. There is no cure. There isn’t even a real cure. I am 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 – for me to fall asleep, talk, or eat. I try all kinds of mouthwashes, but the most they offer is an anesthetic effect similar to Orajel, and ironically a lot of them burn too much to be worth it.

Brushing your teeth becomes a major challenge. Toothpaste burns, but even a damp toothbrush without anything intensifies the pain. I’m starting to dread going back to the dentist after being fully vaccinated against COVID-19 because I know things in my mouth won’t be good.

Eating becomes a nightmare. I never know how something will taste day to day. Sometimes even in a single day. One day, I eat a sandwich and realize that it tastes like… fish. It’s ham and cheddar with mayonnaise, so it’s kind of baffling. It takes some experimentation to realize that the ham and mayonnaise combo is the source of this fishy flavor. Food on its own or with other foods tastes good. Eventually this will pass and the combo will taste normal again. But now I know it could come back to taste fishy (or terrible in some way) at any time.

I know that any food or drink, at one point, can taste completely fucked up. Sometimes the food has virtually no flavor. The first time this happens after the start of the pandemic, I’m just thankful that I’ve experienced it before, as loss of taste is a symptom of COVID-19.

Everything about my mouth is getting sore. Talking, eating, sometimes even drinking. The pain is often very strong in the morning, as I suffer from severe dry mouth (thanks to my psychological medication) and overnight my mouth can get so dry that my throat hurts. Although dry mouth and certain medications can be a secondary trigger for BMS, it seems unlikely in my case since I have had a dry mouth for over a decade.

The most likely explanation is that I have Hashimoto’s disease, an autoimmune disease where your body attacks your thyroid. He did not respond well to the gastric sleeve surgery I had in March 2018, and my thyroid levels have been fucked up ever since. Hypothyroidism can be a trigger for BMS.

There will be nights when I will have to stay awake until I literally am unable to do so because if I just try to sleep the pain will keep me awake and my anxiety will go wild. Some days I have to force myself to just eat something because the pain combined with the unpredictability of how something tastes at any given time is overwhelming. I will become completely exhausted and frustrated with this, and the food will feel like too much work.

I’m going to find myself ignoring calls from my best friend or my mom because talking is too painful (and I’m from New Jersey. I really love talking). I’ll find myself explaining to them, hoping they can understand how ridiculous this all sounds, even to me – the one who lives with it. I will look for support online, but even sites like The powerfull have no resources or communities of patients. I am starting to feel incredibly isolated and alone in the face of this.

I will remember that I am used to chronic pain. After all, I have had fibromyalgia for almost two decades. I 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 is infuriating. I will soon find myself struggling with the urge to engage in various types of self-harm, just to distract myself from the pain or just to feel a different pain. Instead, I’m going to pick my skin – an obsessive-compulsive disorder behavior that I’ve fought since I was a teenager, behavior that will get worse because of BMS (and the pandemic won’t help).

I would like to be able to say that it is gone, that I found something to treat it, that it is “better”. All I can say is that I have adjusted.

I am facing thoughts of suicide for the first time in a very long time. Fortunately, I won’t become actively suicidal, but I will. I don’t want to die, but at the same time, on some really bad nights, I find myself thinking that death would mean the pain is gone. There are times when it doesn’t seem like such a terrible compromise. I realize that I lived with fibro pain for probably a decade before I felt this. BMS took me to this dark place in less than six months.

As of this writing, I have been living with BMS for almost 30 months. I would like to be able to say that it is gone, that I found something to treat it, that it is “better”. All I can say is that I have adjusted. There are days when the pain is really bad or things taste particularly strange or bad, and I just want to cry in frustration. My thyroid is still fucked up.

Hopefully my most recent medication adjustment will be “this one” and eventually stabilize for more than five minutes. Maybe, I dare to hope, if this happens, the BMS will disappear as quickly as it appeared. But other times that hope is too great to allow.

The pandemic has helped with the prospect, in terms of suicidal thoughts. It made me much more aware that I don’t want to die, that there is too much that I still want to do. So I fight in my darkest times. I continue.

Some days are absolute crap, yeah. But I know they won’t all be that way. I know there are still some beautiful, shiny and breathtaking days ahead that I absolutely don’t want to miss, and I also know that on those days my ham and cheese sandwich might taste like fish. I just choose to believe that in these magical moments even this won’t look so awful.

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