4 Your Health

Mysterious condition leaves many patients in pain

CREATED Mar 10, 2014

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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," she laments.

Kelli 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, or BMS.

"It started out for me with a burning in the back of the throat up into the upper back of the palate," Kelli recalls.

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 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," he said.

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 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," Kelli explains.

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 abnormality in the nerve fibers in the mouth," he said. "The other theory is that there is central nervous system abnormality or a brain abnormality in terms of the chemicals in the brain."

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.  Kelli is on one of them.

"By 10 a.m. I am ready for some medicine.  That will take the edge off for me," Kelli admits.

Some patients also use special mouthwashes and topical treatments. Kelli 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," she said.

While BMS never actually goes away, Dr. Woo says 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 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 goes away over time.  If you've been suffering any symptoms, consult your dentist.