(WOIO) - Imagine your mouth feels like it's on fire, all the time. You have no idea why. It simply burns. That is the painful reality for millions of people who suffer from "burning mouth syndrome". It's a mysterious condition. The pain is severe, chronic and unrelenting, and it's tough to diagnose and treat.
Specialists say it can literally ruin the quality of life for its sufferers. Kelli Rourke is one. Her lips, tongue and mouth appear just fine, but soon after she wakes up each and every morning, the burning sets in. "When I say burning, I don't mean like a scratchy throat or a sore throat. I mean burning," says Rourke.
Rourke has suffered with the horrendous "heat" nonstop for more than five years.
She had some dental work just prior to the pain's onset, 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 or BMS.
"It started out for me with a burning in the back of the throat up into the upper back of the palate," says Rourke.
But 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," says Dr. Woo.
It impacts more women than men.
Patients may get a severely dry mouth, but it's the pain that's tough to describe.
They say BMS feels like scalding coffee searing the inside of their mouths, the spiciest food ever, times ten, or even like actual fire.
"It gets bigger and bigger and bigger through the day. The only thing that um relieves it is eating, drinking, or crying for me," says Rourke.
Dr. Andres Pinto, who researches BMS, says relief during eating is quite common and that there is no definitive cause, but there are theories.
"The first one is an 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," says Dr. Pinto.
There's also no cure.
Doctors help patients manage the pain with two drugs typically prescribed for other conditions.
One is usually used to prevent seizures. The other is for anxiety. Rourke is on one of the drugs.
"By 10 a.m. I am ready for some medicine. That will take the edge off for me," says Rourke.
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.
"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,'" says Rourke.
Though the pain never actually goes away, Dr. Woo says many patients experience a dulling of the pain after seven years after their first symptoms.
And not all burning mouth is the same. When doctors can't figure out any trigger, they classify it as a "primary" condition, but you can get burning mouth as a side effect of other illnesses. Those are "secondary" cases. The treatment there is keyed to the original malady. There is also something called "oral burning" which is not actual BMS and goes away over time. Doctors say if you're experiencing any symptoms, the first stop is the dentist.
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