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The Lives of TMJ Sufferers

Life? What life? l don't have one anymore.
—a 46-year-old woman

I don't live with pain, I live through it. And every day is an ordeal.
—a 31-year-old systems analyst

Anyone who has lived with, worked with, or treated a person living in chronic or nearly chronic pain knows that life can be extremely difficult. Many people living in pain have only a semblance of a life. And as if the pain itself were not bad enough, additional pressures and concerns are thrust on people when the cause of the pain is unknown. "To be in pain and be told nothing is 'wrong' is one of the worst feelings I've ever experienced," said one patient who had been living with excruciating headaches and neck and shoulder pain for about six years.

During those six years, this patient, Ray Foreman, lost almost everything in his life: his wife, his business, and a series of jobs. His social life was a shambles, and he lived in isolation and fear that he was really "crazy." Over the period of months he was in treatment for TMJ, he related many things about his previous existence. "My wife divorced me because she thought I was using the pain to avoid her, to avoid success in my business, and to control people around me with the pain," he said. This is a variation on a common theme.

Finding a cause for pain, such as migraine, slipped disc, pinched nerve, or arthritis, enables a person to put a label on the pain. The sufferer can say, "I'm in this pain because I have a condition that is causing it. There's not much they can do for it, but at least I know that it's 'real.' " This knowledge lessens the strain on a relationship, career, or social life, although it certainly doesn't take away the pain.


However, many, if not most, of the TMJ sufferers I've treated over the years have been told that no cause can be found for the pain. The disastrous results of this message are manifested in numerous ways. Financial pressures often mount first, as the sufferer seeks help from one specialist after another. Meanwhile, the person may also be spending money on maintenance therapies, trying to keep the level of pain manageable. When one specialist after another can find no cause, family members, bosses, and friends sometimes become suspicious.

Mr. Foreman's wife started out sympathetic to his problem, and she supported his efforts to find help. Like anyone close to a person in pain, she was terribly concerned and feared that he might have some serious disease. She only began to doubt his pain when the months and years went by and no cause was found. During the time Mr. Foreman was seeking help, his symptoms became increasingly worse. His headaches began in the morning, then built to a crescendo of piercing pain in the afternoon. By evening, he was forced to go to bed, although he rarely slept more than an hour or two at a time.

During these episodes, he was unable to carry on any activity that is a part of a normal life. His formerly successful restaurant received less and less of his attention. Business began to fall off, but he was in such intense pain for such long periods of time that he no longer cared. He was told that the pain must be of psychological origin. He began seeing a therapist, but he couldn't begin to explore any possible emotional reasons for the pain because it was too severe for him to concentrate on the therapy.

It was at this time that his wife began to withdraw from him. "Our lives began to revolve totally around my pain. At first, she began to take days off from her job to go to the specialists with me, and a few times I was so bad off that she was afraid to leave me alone. But gradually things changed. She began to question me about the reality of my pain. Things went from bad to worse for me," he said.

What happened to Mr. Foreman is common in the lives of people with TMJ. After living a joyless life for several years, his wife confronted him and told him that unless he could find some help from a pain clinic or a therapist, she would leave. "We had no social life at all," he said. "I had to sell my business at a loss because I couldn't keep up with it. But even worse, our relationship deteriorated. She began to think the pain was just a way to keep from being with her. I had absolutely no sex drive at all, and she felt deprived of a normal life too. It was awful."

By the time Mr. Foreman came to me, he was living off his savings after trying to hold down a job and being unable to manage it. He was still trying to see a therapist— by now he was so depressed that therapy seemed like a logical alternative. It was his therapist who referred him for TMJ evaluation.


Not all patients with severe TMJ have lives as empty as Mr. Foreman's became, but many do. Long- term pain often causes severe depression, and unless a therapist is knowledgeable, the pain will be blamed on the depression, rather than the other way around. Often the patient who has lived with the problem for a long time begins to confuse cause and effect, too.

One patient was no longer sure about the cycle of depression and pain. "There's been so much speculation about the cause of my pain that I'm no longer sure that the pain isn't caused by the depression," said Elizabeth Gomez. She was being treated for the depression with antidepressants, and for the pain with other drugs. It was no surprise that Ms. Gomez was confused about the cause and effect of her pain. The medication had severe side effects for her, including lethargy and memory loss. Although she managed to hold on to her job as a legal secretary, it was only because her best friend helped her out on the job, literally covering for her and correcting her mistakes. "I can't keep asking her to do this, and I'm not sure what's going to happen," she said. At one point she was considering checking herself into a psychiatric hospital. "I just wanted to escape and perhaps even be more drugged up. Oblivion sounded good to me."

Many patients are almost in oblivion by the time they seek help for TMJ. Even those who are managing to carry out normal functions often seem not to be "there" when being interviewed. Many people will fade in and out of periods of concentration and have enough of a handle on their lives to be aware of this mental cloud they live in. One patient gave custody of her two-year-old son to his father because she was afraid to be with the boy for long periods of time. "My ex-husband said that I was too out of it to take good care of him, and he's right," she said.

For some people, the effects of medication would be worth it if the pain were relieved. But for many people, the pain isn't gone. It may be slightly dulled, it may be less excruciating, but it is still there. Often the medication makes them care less about the pain: it will also dull them to the rest of life. One patient said, "The pain drove me crazy, but at least I could feel normal emotions. I don't cry these days, but I don't feel any joy either."


Sometimes patients are accused of controlling others with their pain. One patient who was accused of this was Sandy Gilbert. Her husband carried a beeper with him at all times specifically because of her problem. When her headaches and dizziness came on suddenly, she would call her husband, and he would "rescue" her.

Almost all of Ms. Gilbert's friends and associates, and even her children, believed that she was trying to control her husband with her pain. They believed that these "attacks" were simply attention- getting ploys. The one person who didn't believe this was Mr. Gilbert, who not only believed the pain was very real, but almost never lost sympathy or patience with her problem. "My wife enjoyed life too much to deliberately ruin any of it with pain," he said.

Woman are often accused of using pain to avoid responsibility or sexual relationships. The "Not tonight dear, I have a headache" joke has become almost a part of accepted cultural humor. To people in pain who want to live their lives normally, it is a cruel joke indeed. Patients whose marriages have been disrupted or even ended as a direct result of their problems feel only despair at what has happened to them.

Many cases are less extreme, of course. Not all people with TMJ problems suffer chronic symptoms. Many patients will have severe bouts with painful symptoms for a few hours, a day, a week, or months at a time. Then the symptoms subside, sometimes for long periods, often for short stretches. Often these people have problems in their work, relationships, or day-to-day living.

Some people who suffer regular but not necessarily daily headaches are afraid to make plans because they are never sure they will be able to carry them out. "I've stopped making dates," said one young woman. "Cancelling out once in a while is socially acceptable. But trying to find excuses to beg off over and over again eventually wears on people. Most of my friends think I'm at least a bit neurotic. "

This label of neurotic is a common one put on people who suffer from symptoms. People think TMJ sufferers are complainers or that they are weak; people may even accuse the headache sufferer of being a hypochondriac. Sometimes people who have TMJ seem to suffer from more minor illnesses and health complaints than people who don't have it. Pain can be exhausting, but it isn't unusual for TMJ patients to report having trouble sleeping. They may catch colds frequently or, in the case of women, may have more menstrual complaints.

Often after treatment, patients will report feeling better in every way—mentally, emotionally, and physically. Over and over, people say that they have fewer minor health complaints when they no longer live with chronic pain. Even though TMJ isn't life-threatening in and of itself, TMJ does affect overall health and well-being.


Because headaches are such a common health complaint, they are viewed as normal. Many people feel that they just have a bit more severe case of this "normal" occurrence. Often these people live through the pain and by acts of will rise above it. They continue to lead normal lives, and in many cases "pretend" their way through it. One man said, "I never told anyone, not even my closest friends, that I had headaches almost every day. Not one person even saw me rub my temples, and I didn't tell people that I had regular massages because of the pain. They just thought I was indulging myself in a luxury item. It wasn't a luxury, it was a necessity."

Many patients are like this man. They don't complain, they don't talk about the pain, and somehow they manage to maintain professional and personal lives. Some homemakers even manage to take care of small children and run a household while in pain much of the time. These are the patients who seek help after reading about TMJ in popular magazines or hearing the subject discussed on radio or television shows. They identify with the symptoms, and only then do they tell others that they are like the people described in the articles or on the shows.


A few patients have talked about personality changes as a result of pain. They felt they were once pleasant people, able to enjoy others and have friends, but once the pain became more frequent and more severe, they became irritable and short-tempered. "My friends know when I'm having my symptoms," one woman said. "My sense of humor is gone, and my patience is almost non-existent. I feel like a different and not very pleasant person."

Patients have reported changing their careers because the pain they were in made them unable to deal with people. "I couldn't sell anything to anybody when I was hurting. I became a proof-reader instead of a salesperson so I could work in isolation. The pain was still there," a woman said, "but at least I didn't inflict my troubles on other people." This woman rarely talked to anyone about her symptoms because she thought they were just a part of normal life and no one could help her anyway.

People who suffer any TMJ symptoms over a long period often begin to view them as universal. Sometimes a patient will say, "Doesn't everyone have this popping sound in the jaws? I've had it for as long as I can remember." Other people begin to believe that ringing in the ears is normal. It becomes normal for them, because they have managed to ignore it and live with the symptoms.

TMJ symptoms strike many people. Almost everyone knows what a minor headache feels like, or shoulder and neck pains after a long, tense day. Most people experience these things once in a while. Minor symptoms can come and go and never have an impact. For these people, the vast majority, TMJ is insignificant and most likely needs no treatment. But, when pain begins to take over a person's life, all kinds of changes follow. It's tragic to see and hear so many stories of destroyed marriages and careers. It's tragic to know that many people are walking around in pain and believe that nothing can be done about it. However, treatment can help people whose pain is caused by TMJ. Most can become virtually pain- free, and most can put their lives back in order. Many patients refer to treatment as "getting my life back."

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