Burning mouth relief eludes sufferers

Published 9:00 pm Monday, May 10, 2004

Doctors ask patients to rate their pain on a scale of one to 10. Sometimes, Patty Roberts’ pain drops from a seven to a four. Other times, it zooms to nine and a half.

It never drops to zero.

There is no cure for burning mouth syndrome.

“I have better days,” Roberts said. “I never have a day without pain.”

The slim Edmonds woman with bouncy brown hair looks the picture of health. No one would know she can no longer work as an early childhood educator because of pain inside her mouth. Perhaps a nerve problem sends the excruciating message radiating from tongue to gums.

“It’s debilitating,” said Roberts, 49. “It makes you not want to see people.”

The pain of burning mouth syndrome is real, said Edmond L. Truelove, chairman of the Department of Oral Medicine at the University of Washington.

“We see and are referred many patients with burning mouth and most suffer very much from their symptoms, particularly because doctors evaluating them see that the tissue looks normal in most cases and therefore tell the patient that symptoms are either not real or just in their heads,” Truelove said.

“The burning sensation typically is absent upon awakening and becomes more severe as the day progresses.”

It’s hard to believe what Roberts is doing to get some comfort. She did research on the Internet and found a man in Europe selling small patches of T-shirt material that a patient chews. Roberts bought her own cotton fabric, washed and sliced it, and chewed the fabric all day like gum.

“It brings the pain level down,” she said. “At this point, it’s the only thing I have.”

Truelove said the symptoms of burning mouth syndrome include mild to severe burning of the tissues lining part or all of the mouth. He said most patients describe symptoms as having a major impact on their ability to concentrate and function.

At least a dentist validated her pain, Roberts said. Wearing a mouth guard helped some, apparently tricking the brain to knock off delivering pain impulses. She could try some medications, but has a sensitive digestive system that dislikes things out of the norm.

Roberts sticks to a very regulated but nutritional diet. Breakfast is often oatmeal, a soft boiled egg and a banana. Lunch is pasta, turkey breast (but not prepared meat) and zucchini. Dinner is usually chicken or fish, rice, potatoes and vegetables.

At her side is Dave, her doting husband of 25 years and the father of their two grown children, who works in the insurance business.

He understands that she doesn’t drink caffeine or alcohol and doesn’t eat chocolate or anything spicy, Roberts said.

Because certain textures hurt her mouth, she avoids toast. If takes a long time to carefully chew a cracker. Forget potato chips. Salt irritates her mouth.

She never has fast food. Dinner out is difficult, but she might order baked salmon with no seasoning.

Ice hurts. It’s too cold.

“Frozen yogurt is my only indulgence,” she said. “But it has to be almost room temperature.”

The couple goes to a movie now and then. Going with another couple and having to chat would irritate the painful parts of her tongue and upper palate, she said.

“It’s somewhat isolating,” Roberts said. “People don’t understand. It’s the weirdest thing.”

Burning mouth syndrome is not common in adults before the age of 50 and is much more common in females than males, Truelove said. Surveys suggest that as many as 1 percent of older adults suffer from the condition. One survey suggested that up to 3 million adults in the United States suffer from the syndrome but those numbers are not confirmed.

Roberts hopes to start a support group for anyone with the syndrome so they can get together and share information and tips (e-mail her at pmcroberts54@hotmail.com).

Truelove’s tips include eating candy with high levels of capsaicin pepper, which may block nerve pain receptors in the mouth.

“Occasionally a simple soft mouth splint that protects the tongue from the teeth reduces the burning dramatically,” Truelove said. “Biofeedback, relaxation therapy, self hypnosis, acupuncture and cognitive behavioral therapies have been somewhat successful.”

Roberts thinks it would be good if others with burning mouth syndrome would get in touch with her.

“Maybe we can share tricks,” Roberts said. “I’m always looking for something that might help.”

Roberts is also attending a healing group where she prays for pain relief.

Any relief would be welcome.

Columnist Kristi O’Harran: 425-339-3451 or oharran@heraldnet.com.