"Accepting is saying: 'Given that this is my situation, what can I do to minimize the disruption and what can I do to have a meaningful life?'"(JENNIFER P. SCHNEIDER)
Jennifer P. Schneider, MD, is a Tucson, Ariz.-based physician certified in internal medicine, addiction medicine, and pain management, and author of Living With Chronic Pain: The Complete Health Guide to the Causes and Treatment of Chronic Pain. In her practice she advocates a combination of pain-control drugs, exercise, and behavioral therapy so that patients can understand how their own thoughts can affect and improve their coping abilities
Q: Is it accurate to say that most chronic pain, by definition, is not really curable?
A: Basically, the only way most chronic pain is likely to be cured is if something surgical is done. For example, a knee is finally replaced, or else a spinal cord stimulator is successful. What prevents most chronic pain from getting cured is that the nervous system has undergone some permanent changes.
Q: By the time patients come to you, have they begun coping with the fact that their condition is chronic?
A: Most patients with chronic pain, when they first come to see me, are hoping that the specialist will find out what is wrong with them so they will get cured. They're hoping for yet another test, the latest evaluation. But they have to understand that chronic pain is different. It's qualitatively different. It's pain that has lost its usefulness and become automatic in the body.
The goal of chronic pain treatment is to minimize the pain and to maximize the function. The pain itself now becomes the medical problem. Chronic pain patients have to accept that their goal is no longer to find out what it is, but rather to find out how they can live with it.
[ pagebreak ] Q: How long does it generally take for chronic pain patients to accept their situation?
A: I would say it takes well over a year to come to acceptance. There are stages of grief. In essence you have go through the last stage of grief and get to acceptance, and that takes a long time. But you can't work through those stages until you understand that you're dealing with something that won't go away. So many patients are convinced that if they only find the right doctor they can be cured. If they're stuck in that, they can't get better. Once you accept that you have to work with what you havethat this vulnerable back is always going to be part of your lifethen it will empower you to ask, "Therefore, what can I do to make things better in these circumstances, in terms of compliance with medication, exercise, etc."
Q: Maximizing function involves a program of exercise and activity, but doesn't that hurt more?
A: If you don't use the muscles, they become deconditioned. For example, you may have nothing wrong with your back, the problem may [originate] in your leg, but if you're not moving, all of your back muscles will get weak, and then it's likely your back itself will hurt. It's very important to keep moving.
Q: If it hurts to exercise, how do you make it part of your day?
A: You have to take the choice out of your exercise. You can't say you don't have time. I ask patients, "How often do you shower? You make your time for those things because you've taken them out of the realm of choice." You have to make exercise a routine part of your schedule.
[ pagebreak ] Q: Are there some personalities who have a harder time accepting their new limitations?
A: Personality types are very important. Certain personalities, like the so-called achievers, find it very hard to adjust their expectations. They have this picture in their heads of what it takes for them to be loved or admired. But if [the doctor has] some sense of what their sense of loss is, then you have a chance of reaching them.
The bottom line is, either they adjust their expectations and gain some peace of mind, and have positive things in their lives, or else they go around forever being angry, frustrated, and miserable. As we get old, of course, we all adjust our expectations. So it's a part of life to adjustbut you have to do it earlier and more severely.
Q: How easy is it to find a physician who will take the time to discuss coping strategies?
A: There aren't nearly enough pain physicians in the country who take the time to counsel patients. A doctor can hardly make a living doing that. So patients may have to turn to counselors who specialize in pain. But in general any variety of cognitive-behavioral therapist can help. They will talk about the consequence of your feelings, your thoughts, your actions.
Q: Because there are no actual tests for things like fibromyalgia or even migraines, do you find that pain patients are discriminated against?
A: Yes, and to add to the problem, most fibromyalgia and migraine patients are women. There's no question that there is sexism and racism in the issue of chronic pain. Research shows that women and people of other races get pain treatment in significantly smaller proportions in emergency medicinebut I have a feeling that's true in general.
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Most fibromyalgia patients come in already having been disrespected by family members, other doctors. And because there is a strong connection between what happens in the mind and in the body, if you are anxious or depressed it will increase your pain. It's a vicious circle. How do you treat this? You spend time with patients, send them to counselors. But this is the ideal. It doesn't happen with most patients.
[ pagebreak ] Q: Caregivers have to provide extra care for a spouse in pain and also deal with the fact that their own lives are disrupted. How do they deal with that?
A: The biggest problem for caregivers is that they can't talk about it, really, with the person who is causing them to be in this situation. They can to some extent, but on a day-to-day basis you can't keep saying to your spouse, "I'm angry with you, even though I know it's not your fault." There's only so many times you can say that, if you can say that at all. So they hold it in.
I'm a total believer in support groups for people in the same situation. You can say to people in your support group of caregivers, "You know, there are times when I'd like to wash my hands of this whole situation, and move a thousand miles away." That's totally normal, but it's a temporary feeling.
Q: You often hear that friends withdraw from people who are in chronic pain, but do people in pain also withdraw from friendships?
A: When you have the flu or a bad cold, when you feel you're dying even if you know it's just a virus, you want to go to bed. You don't want people around. You don't want to relate. And it's the same with significant pain. It takes too much effort to be nice, to socialize. So a lot of people do withdraw.
Other people never quit kvetching. It gets to where a friend doesn't even want to ask them how they are because they'll launch into 10 minutes about their medical problems. That's a way of pushing away friends. So there is a tendency toward isolation.
Q: What do you admire most in your chronic pain patients?
A: What I admire is somebody who is realistic about their limitations, but within that framework is doing their best to have a life. To maximize their function. To have meaningful things in their lives. People who have been able to not have their pain be the only thing in their lives.
Accepting doesn't mean doing nothing about it. Accepting means saying, "Given that this is my situation, what can I do to minimize the disruption and what can I do to have a meaningful life?"
Q: How do those people minimize the disruption?
A: For a start, distraction. Distraction is the first line of defense against pain. You can't distract yourself when you're suffering 10 out of 10 pain, overwhelming pain. But if medication and therapy can get you down to the level where you can be distracted, then a movie, a conversation, televisionthese things can make you feel better. But you have to be willing to open yourself up to that.
Q: Your daughter died of colon cancer at the age of 31. Did that teach you something about acceptance?
A: When doctors tell patients to quit being sorry for themselves, most patients discount it, because they're thinking "You don't know what I've been through." But in my case, many of my patients realize that I, too, have been through a devastating experience. So in my office practice I fairly often have a discussion like this: "I know it's really hard to have something bad happen to you. And I understand how terrible this is for you. But one of the things I learned from my daughter's deathand I have now lived twice as long as she didis that I want to make the best of things. I have a formal practice of noticing every good thing that happens to me. If there's a full moon out there, I'm so grateful to see it. I focus on the positives."