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Life, in pain: Part 4 — TMJ disorder

Chronic pain has long baffled doctors and often left patients feeling helpless. But a mind-body approach is helping Chicago women reclaim their lives.
Jenni Prokopy
Contributing writer

In this six-part series, Jenni Prokopy of ChronicBabe.com joins Well Community in examining the six most common chronic pain conditions affecting women — chronic fatigue syndrome, endometriosis, fibromyalgia, vulvodynia, TMJ dysfunction and interstitial cystitis.

To read the introduction to the series and a personal perspective from the series author, click here.

We’ve heard over and over that stress can contribute to deterioration of many of our body’s physical and mental functions. This is all too true for those living with TMJ (temporomandibular joint) disorder — a painful jaw condition that causes difficulty with eating, talking, and even smiling.

“There is not even a question — we know absolutely that stress is the number-one driver of this,” said Dr. Kirk Bennewitz, a dentist located in Evanston. “There have been studies recently showing that TMJ is on the upswing dramatically due to the economy and the state of the world.”

The rate of TMJ disorders is already high; official figures estimate that 35 million people in the U.S. experience TMJ disorder-related pain. Bennewitz pegs the number much higher, around 80 or 90 million, and estimates that at least 35 percent of his patients experience some form of the disorder.

Women are especially hit hard: the TMJ Association says many more women than men live with pain from the condition. And it impacts patients’ lives in ways beyond the physical inability to move their jaw: Dr. Sanford Block, a dentist and the director of dental services at Swedish Covenant Hospital, says many patients arrive in his office exhibiting what he calls an “illness behavior pattern,” including discouragement, deterioration of their day-to-day activities, trouble at work and issues within their relationships.

But fortunately, unlike many other chronic pain conditions, there are proven therapies that can help patients with TMJ disorder greatly improve their symptoms and decrease their pain.

Treatment options bring hope

The most impactful treatment, Block says, is the use of night guard appliances, which prevent people from grinding their teeth while sleeping. He cites success rates of 75 percent or higher for these patients, especially when they also incorporate other efforts such as opening/stretching exercises and jaw relaxation techniques, avoiding certain foods and avoiding nail biting, pencil biting and daytime clenching.

And there is help beyond the dentist’s office — and even beyond caring for just the jaw area.

“In early TMJ, you could decrease the functional strain of the temporomandibular joints by looking at body posture,” says Dr. Angelique Mizera, a physical medicine and rehabilitation at Swedish Covenant Hospital. “Body posture does affect how your bite is and how your TMJ works. Before that cartilage or the ligaments get worn out and pinched and irritated, [physical] manipulation could be helpful.”

Dr. Steven Kvaal, a clinical psychologist at Swedish Covenant Hospital, teaches patients behavior intervention, in which they set a timer for three minutes to check for clenching and grinding. 

“If they are, they relax their jaw,” he says. “I teach them some relaxation methods for reducing that muscle tension.”

When they can go through three cycles in a row without clenching or grinding, then they shift to five-minute cycles.

“I usually find it doesn’t take more than a few days of that to start breaking that habit,” says Kvaal.

Research: What’s on the horizon for TMJ disorders?

Thirty-five million people in the U.S. have TMJ disorders, yet research grant funding from the National Institutes of Health in 2010 was only $17 million — that’s just $.49 per person, according to a 2011 report by the Chronic Pain Research Alliance (CPRA).

While Block doesn’t predict major changes in terms of TMJ disorder management in the coming years, he does think more research is needed.

“I think some of the monitoring modes, like biofeedback, relaxation response, appliance therapy — I think we’ll get a better idea of why this impacts more women,” he says. “If they can get the pathophysiology down, then management may be even more sophisticated than it is now.”

For now, he says, he is pleased with the high success rate: “If you can get a 75 percent success rate with just appliance therapy and a few other adjuncts, you’re doing well. I hope all disorders can be treated that successfully.”

A number of organizations are conducting research on TMJ disorders, and the TMJ Association has a catalog of current findings. For a more comprehensive list, check out the NIH’s ClinicalTrials.gov site.

Laura’s story: Life with TMJ disorder

Although she has lived with some TMJ disorder symptoms since she was a teenager, Laura, a 32-year-old Chicagoan living in the Andersonville/Edgewater neighborhood, didn’t seek treatment until earlier this year, when she was struck by a severe onset of symptoms: She woke up one morning to excruciating pain that started in the back corner of her jaw and worked its way up around her ear and neck.

Laura begged her roommate to take her to the emergency room, where she was treated with medication and sent home. The strong medication made it impossible for Laura to work her job as a software engineer; a visit to her general practitioner resulted in a prescription for muscle relaxants instead, which enabled Laura to work but “didn’t touch the pain.”

“When the pain is at its worst, I’m pretty useless,” says Laura. “I take the day off work or answer only urgent emails; I instant message to avoid talking; I sleep oddly propped on pillows to try to keep my jaw not in any pressure and yet dropped a bit so it can relax, which makes it hard to actually sleep. I've had to invest in a new mattress and new pillows to try to address the pain in any way I can.”

Laura says at times, facing the emotional challenges of chronic pain has been difficult.

“It’s hard to feel like you can’t be tough enough to handle the pain,” she says. “Society wants you to just take an Advil and get back to work; it’s not that easy. When you’re dealing with that kind of chronic pain, when it’s central to that part of the body where the nerves ring really loud, you can’t just decide to ignore it.”

Now working with a naturopath, Laura treats her pain symptoms with massage, trigger point injections and acupuncture. She also has recently found a dentist who is treating her TMJ disorder and is feeling more hopeful about the future.

Editor’s Note: The patients we interviewed for this series asked that we protect their privacy by not sharing their names. We felt it was important to share these testimonials to help shed light on the day-to-day impact these conditions have on local women.

5 tips on searching for chronic illness support groups

  1. Look for a group that contains a mix of people from different backgrounds, including some who are near your age; this will help you gather different perspectives and find people you can relate to.
  2. Ask your health care providers if they know of any reputable groups in your area; their recommendations are often trustworthy.
  3. Check with local hospitals to see if they host support groups near you.
  4. Be prepared to use support groups as a supplement to the other support you may receive from friends, family and your health care team — not as your only source of support and encouragement.
  5. If you join a group and realize it’s not really a good fit (it’s too far to drive, or too many people are negative), quit it! Your time is precious. You’ll be able to find another.

Support group resources

  • Daily Strength offers a strong TMJD support group online.
  • The TMJ Association offers lots of online resources, plus individuals you can contact directly to talk about personal issues.

More resources online

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