Burning Mouth Syndrome, or BMS, is a mysterious condition that affects millions of people. A person's mouth simply burns. The pain is severe, chronic and unrelenting. Specialists say it can literally ruin the quality of life for sufferers.
"When I say burning, I don't mean like a scratchy throat or a sore throat. I mean burning," explained Kelli Rourke, who says the burning sets in right after she wakes up every morning.
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Rourke has suffered with the horrendous 'heat' non-stop for more than five years. She had dental work prior to the pain, but her dentist couldn't pinpoint an exact cause.
What followed was a flurry of specialists, tests and medications that didn't work for her. Finally, a diagnosis: Burning Mouth Syndrome.
"It started out for me with a burning in the back of the throat up into the upper back of the palate," Rourke explained.
Now it has spread to her tongue. Doctors diagnose BMS by ruling out everything else, including nerve damage, oral yeast infections and diabetes.
Harvard Oral Surgeon Dr. Sook-Bin Woo says it's a tricky condition.
"You can work the patient up extensively with blood work, you can examine the patient very carefully and you're really going to see nothing," she said.
BMS impacts more women than men. Patients may get a severely dry mouth, but it's the pain that's tough to describe. They say it feels like scalding coffee searing the inside of their mouth, or the spiciest food ever tried times ten and some say it feels like actual fire.
"It gets bigger and bigger and bigger through the day," explained Rourke. "The only thing that relieves it is eating, drinking or crying for me."
Relief during eating is common, says Dr. Andres Pinto, who researches Burning Mouth Syndrome. He says there is no definitive cause, but there are theories.
"The first one is um abnormality in the nerve fibers in the mouth. The other theory is that there is central nervous system abnormality or a brain abnormality in terms of the chemicals in the brain," said Pinto.
There's also no cure. Doctors help patients manage the pain with two drugs typically prescribed for other conditions: one to prevent seizures, the other for anxiety. Rourke is one of them.
"By 10 a.m. I am ready for some medicine. That will take the edge off for me," she said.
Some patients also use special mouthwashes and topical treatments. Rourke says she has suffered depression because of her chronic pain. She is hoping for a breakthrough on a cure soon to help her and the millions of others who can't bear to swallow their pain another day.
Rourke explained, "I think the doctors have done what they can at this point. They look at me pityingly and say, 'There's really nothing else to try, um, and good luck to you.'"
While BMS never actually goes away, Woo says for many patients the pain dulls an average of seven years after their first symptoms.
And, not all burning mouth is the same. When doctors can't figure out any trigger for the syndrome it is called a 'primary' condition. However, you can get burning mouth as a side effect of other illnesses. Those are 'secondary' cases and are treated in accordance with the needs of the initial problem. There is also "oral burning" which is not actual BMS, and it goes away over time.
If you've been suffering any symptoms, consult your dentist.