For most of her life, Lynn Tomfohrde didn’t worry much about her mouth. Besides undergoing the usual orthodontia work as a kid and developing a couple of cavities in her 20s, her dental history was clean.
But lately, all Tomfohrde, 56, can do is worry about her mouth. Her bite is off, her teeth are collapsing inward, her face droops and her jaw and teeth constantly ache. She’s gripped by anxiety when asked out to eat, tires quickly when talking and rarely sleeps more than four hours a night due to the pain. Even the rest of her body has weakened since weightlifting — her passion — aggravates symptoms and can be dangerous on such low energy.
“Once [the rest of my body] goes,” says Tomfohrde, a former computer science professional in Spring, Texas, “where am I?”
Tomfohrde’s symptoms all trace back to a tissue graft her dentist recommended about two and a half years ago to correct her receding gums. The procedure left her bite off, which led her to a mouth guard, which provoked chin pain, continued to shift her bite and began displacing her teeth. She wound up wearing braces and undergoing physical therapy (which, in Tomfohrde’s experience, involved the practitioner painfully “jamming her fingers” inside her mouth). Both treatments seemed to contribute to, not solve, the increasingly long list of problems Tomfohrde is dealing with today.
“It has never stopped progressing,” Tomfohrde says.
[See: On a Scale From 1 to 10: Most Painful Medical Conditions.]
Tomfohrde’s experiences are a startling example of how bad temporomandibular joint dysfunction, or TMD, can get. The condition — which is sometimes called TMJ (the name of joint) or TMJD, as in TMJ disorder or dysfunction — is a broad term to describe jaw pain and dysfunction related to something structurally off with the hinging joint itself, a problem with the muscles that support it or both, says Dr. Donald Tanenbaum, a TMJ and orofacial pain specialist in New York. Because the jaw’s muscles and joints are so complex and full of nerve endings, “there are lots of risk factors that can cause things to go wrong,” he says. And when they do, he adds, “the pain problems that arise can be acute and they may be widespread.”
For example, people with TMD often complain of headaches, earaches, ear ringing, nausea, fatigue, neck pain and even numbness and tingling in the hands or fingers before they or their providers ever realize their jaw is involved, says Beret Kirkeby, owner of Body Mechanics in New York City, a massage therapy practice that offers massages — some using techniques inside the mouth — specifically to ease TMJ symptoms. “You can imagine with all those [symptoms], people sometimes get really lost … it really throws you for a loop,” Kirkeby says. “People spend a lot of time trying a lot of treatments and it’s debilitating for them.”
Tomfohrde calls that “the TMJ merry-go-round” — an unending cycle of provider visits that leave patients dizzy with conflicting diagnoses, treatment options and medical bills. She alone has seen practitioners across the country in general dentistry, cosmetic dentistry, jaw and sleep medicine, ear nose and throat specialties, orthodontia, oral surgery and periodontology. After all, physicians aren’t typically well-trained in jaw problems, which medicine tends to consider a dentist’s domain, and dentists often lack a solid understanding of the joint because they tend to be passionate about teeth, not orthopedics, experts say. Insurance coverage also often falls in the same gap, with dental insurance typically only covering some parts of treatment and medical insurance brushing off other parts as dental insurance’s responsibility. Tomfohrde, for one, estimates dishing out close to $25,000 for doctor visits, scans, procedures and devices, which weren’t covered by insurance.
By the time patients reach Tanenbaum, they often ask, “Why couldn’t I find you sooner? Why did it take me so long to find you?” he says.
[See: 10 Lessons From Empowered Patients.]
It’s a good question considering that TMD is far from a rare disease: The TMJ Association reports it affects about 12 percent of the population at any given time, and other research finds as many as 83 percent of people in certain populations (in this case, Australian female dental students) have at least one TMD symptom. But like some practitioners, much of the general population doesn’t seem to acknowledge the condition exists, Tomfohrde finds. “It’s easy to collapse in your shell and push everybody away because they don’t understand.”
The condition seems to affect more women than men, which may be related to estrogen’s effect on inflammation, though more research is needed in that area, says Dr. Karen Kahn, a dentist at the Cleveland Clinic who specializes in facial pain and TMJ disorders. It also makes sense that more women have TMD because the chronic pain conditions that often come along with it — chronic fatigue syndrome, endometriosis, interstitial cystitis, fibromyalgia and irritable bowel syndrome, to name a few — are more common in women, the TMJ Association points out. “Patients with chronic pain already have a sensitive [nervous system] and it takes less input to cause them pain,” Kahn says. “We have to look at the whole picture.”
Clinicians who do that — looking at the patient’s full medical history, life circumstances, stress levels, sleep patterns and performing scans when necessary — are the most successful in treating TMD, which is usually only completely cured if it’s strictly an orthopedic issue caused by something like a blow to the face, Tanenbaum says. Most TMD patients, though, have at least some neuropathic pain — that is, pain rooted in the brain, not a trauma to tissue. That type can often be eased with strategies including therapy to manage anxiety or stress-reduction techniques like deep breathing and meditation, “Once we get them to practice some self-help management to reduce their stress levels, they often get better,” Kahn says.
Improving sleep too, which may involve working with a sleep specialist, is critical to both manage pain and intercept habits like grinding that patients may be unaware of. Kahn often works with patients to raise awareness of their daytime habits, too, by asking them to put reminders around their offices and homes that prompt them to check if their mouths are in proper resting position: lips together, teeth apart, tongue tip touching the roof of the mouth. “Many patients walk around with their teeth clenched,” she says. “Once they learn to relax the jaw, they can feel better.”
[See: 8 Ways to Relax — Now.]
Other interventions including physical therapy to relax the face and neck muscles, splints, Botox, acupuncture, massage, anti-inflammatory medications, diet and behavior modifications (say, no more gum chewing or tough meat eating) can help some patients too — and are usually used before more invasive options like surgery, which the National Institutes of Health recommends avoiding. That’s a positive change from decades past when providers more often jumped to open joint surgeries before trying more conservative therapies, Kahn says. The key, she says, is understanding the cause of symptoms (say, a poor bite or muscle tension) and treating it accordingly. “It’s not a problem to be feared,” Tanenbaum adds. “With the right team and in the right hands … this population of patients does rather well.”
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What Is TMD and Why Can’t More Patients Find Effective Treatment? originally appeared on usnews.com
