(CBS) — Imagine your mouth feeling like it’s on fire — all the time. You have no idea why; it simply burns.
As CBS 2’s Roseanne Tellez reports, it’s the painful reality for millions of people who suffer from “burning mouth syndrome.”
Her lips, tongue and mouth appear just fine, but soon after Kelli Rourke wakes up 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,” she says.
Rourke has suffered from this pain for more than five years. It started after she had some dental work, but her dentist could not find a cause. After many tests, her diagnosis was 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,” she says.
Doctors diagnose BMS by ruling out everything else, including nerve damage, oral yeast infections and diabetes.
“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,” oral surgeon Sook-Bin Woo of Harvard University says.
Patients say BMS feels like scalding coffee searing the inside of their mouth.
“The only thing that relieves it is eating, drinking, or crying for me,” Rourke says.
Doctors help patients manage the pain with two drugs. One is typically prescribed to prevent seizures, the other for anxiety. Rourke is one of them.
She keeps hoping for a cure.
“I think the doctors have done what they can at this point. They look at me pityingly and say, ‘Good luck to you,’” she says.
Some patients are helped by special mouth washes and topical medicines. Burning mouth syndrome can sometimes get better. For some patients, the pain dulls after an average of about seven years.