A 24-year-old professional performer woke up one day with red and white patches on his tongue. And soon after he felt pain throughout his mouth. He was on stage in the middle of rehearsal when his lips and palate started burning so badly he had to leave early.
“The pain was unbearable,” recalled Thomas, who prefers not to share his last name. At first he
learned he had geographic tongue, a condition that causes a red and white map-like pattern to appear on the tongue, but the normal tiny bumps are missing. Days later, he started getting additional symptoms of Burning Mouth Syndrome.
“It felt like needles dancing on my tongue,” Thomas described. “In the beginning, the pain was intermittent but then it was constant. I started frantically looking for answers.”
Thomas went to dentists, physicians, and pain specialists in New York City where he was working and also near his parents’ home in south Florida. He tried anti-fungal and dissolving mouthwashes, anti-depressants, and a long list of different medications. He tried sucking on ice, and he even tried laser treatments, which worked, but only briefly.
“I tried everything,” he said, but absolutely nothing helped alleviate his pain. “Every other specialist I had been to told me it would go away, and that it was caused by anxiety,” he said.
“I woke up every single day and my whole mouth was burning all day. It hurt to eat,” added Thomas, who lost 20 pounds in the process. One infectious disease doctor told him that he if he didn’t start eating, he would put Thomas on a feeding tube. His career suffered, and the relationship with his girlfriend ended. He spent weeks in therapy for depression and anxiety.
During his quest for information and solutions, he noticed that most people who suffer from Burning Mouth Syndrome are older women, which only added to his confusion and frustration. Depressed and distraught, he would ask his father to lie next to him many nights just so he could fall asleep.
One day, after some three months of being completely out of commission, Thomas was scrolling through a Facebook Group for geographic tongue. He posted a plea for help, saying he’d go anywhere. “In response, someone shared an article about how a doctor in Rochester, New York helped cure a woman with Burning Mouth Syndrome,” he said.
A couple weeks later, thanks to his grandfather who purchased airline tickets, Thomas and his father were sitting at the University of Rochester’s Eastman Institute for Oral Health, with Dr. Sharon Elad, the doctor featured in that article.
“Thomas was suffering with both Burning Mouth Syndrome and geographic tongue,” explained Dr. Elad, chair, Oral Medicine Division. “Generally, BMS and geographic tongue are unrelated conditions. It is unclear if in Thomas’ case there was a common denominator that flared up both.”
When two oral conditions overlap, Dr. Elad explained, the diagnostic process is more challenging and needs more steps to reach a diagnosis. “During this process, I carefully consider the details of the symptoms, and after numerous blood tests, I’m able to eliminate known possible systemic contributing factors.”
Dr. Elad also conducted clinical exams at several time points using intra-oral camera and telemedicine to communicate remotely. Based on Thomas’s responses at each visit, the treatment was sometimes modified.
“She’s really cool and understanding and honestly I have not been to another doctor who gets it like she does. The others just don’t know,” Thomas said. “Dr. Elad is great.”
Dr. Elad used several compounds for a specialized mouthwash that she prescribed Thomas. It was the magic bullet he’d been hoping for.
“BMS can cause extreme oral pain and for many patients, it can be debilitating and negatively impact their quality of life,” said Dr. Elad, who added that while BMS does occur among older women, she has numerous younger male and female patients who also have it.
“Unfortunately, we don’t know why people get it at any age,” she added. “Geographic tongue is usually asymptomatic, but in a small portion of the patients, it may cause symptoms, and is usually treated with topical steroids.”
Because Thomas’s symptoms were severe, Dr. Elad treated him with compounds and modified it gradually until an optimal effect was achieved. “The patient’s collaboration is key to go through the steps successfully,” Dr. Elad added. “I am very happy that Thomas feels better!”
“Dr. Elad has gone above and beyond with me and I’m really grateful,” said Thomas, whose pain has disappeared almost completely.
Dr. Elad and Thomas used telehealth during peak COVID months to connect due to travel restrictions. He uses an intraoral camera guided by Dr. Elad’s direction. “Our telehealth services are only available within New York State, and we are working to extend it,” Dr. Elad explained.
“If I didn’t see that article, I would still be sitting around depressed, trying to figure out what’s wrong with me,” said Thomas, who has gained the weight back, is sleeping well and waiting for theaters to re-open so he can get back to work singing and dancing. “People who suffer from this do not know why it happens. I think it’s important for people to know they can get help for this and know they’re not nuts.”