MIAMI (CBSMiami) — Imagine your mouth feels like it’s on fire all the time. You have no idea why, but it simply burns.That is the painful reality for millions of people who suffer from “burning mouth syndrome”.
The pain is severe, chronic and unrelenting. Yet it’s tough to diagnose and treat! Specialists say it can literally ruin the quality of life for sufferers
Her lips, tongue and mouth appear just fine, but soon after Kelli Rourke 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,” said Rourke.
She 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,she was diagnosed with 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,” said Rourke.
It later spread to her tongue. Doctors diagnose BMS by ruling out everything else including nerve damage, oral yeast infections and diabetes.
Harvard oral surgeon Sook-Bin Woo said 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,” said Woo.
BMS impacts more women than men. Patients may get 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 mouth. The spiciest food ever tried times ten or even like actual fire.
“It gets bigger and bigger and bigger through the day. The only thing that relieves it is eating, drinking, or crying for me,” said Rourke.
Relief during eating is common said 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 is meant to prevent seizures and the other is for anxiety. Rourke is on one of them.
“By 10:00 a.m. I am ready for some medicine. That will take the edge off for me,” said Rourke.
Some patients also use special mouthwashes and topical treatments.
Rourke said 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,” said Rourke.
While BMS never actually goes away, Dr. Woo said for many patients the pain dulls an average of seven years after their first symptoms.
Not all burning mouth is the same. When doctors can’t figure out any trigger, it is called a ‘primary’ condition;however, you can get burning mouth as a side effect of other illnesses.
If you’ve been suffering any symptoms, consult your dentist.