When Someone You Love Has Chronic Pain with Stephen Taylor

WebMD Live Events Transcript

Event Date: 06/08/2000.

Does someone in your life suffer from chronic pain? Watching can be frustrating and agonizing. Join pain specialist Steven Brasch, DO, when he discusses caring for a chronic pain sufferer, and ways to make it easier on yourself and your loved one.

The opinions expressed by Dr. Taylor are his and his alone. If you have questions about your health, you should consult your personal physician. This event is meant for informational purposes only.

Moderator: Welcome to The Informed Caregiver program on WebMD Live! Our guest today is Stephen Taylor, DO, and the topic is "When Someone You Love Has Chronic Pain."

Staff physician and director of research at the Forest Park Institute for Pain Recovery, Research and Rehabilitation in Fort Worth, Texas, Taylor is an expert in percutaneous electrical nerve stimulation (PENS), hypnosis, behavioral therapy, biofeedback, tai chi and motion therapy, and Tibetan medicine practices.

Welcome back, Dr. Taylor! How are you doing?

Dr. Taylor: I'm doing fine, thank you. I'm glad to be here.

Moderator: First off, any exciting news in the world of pain management that you'd like to share since we last spoke?

Dr. Taylor: There has been some good news about the treatment of postherpetic neuralgia. Dr. Bausman of San Francisco has shown that treating patients with Elavil at the first outbreak of shingles helps prevent the very painful and debilitating condition, postherpetic neuralgia.

Moderator: Do you often encounter family and friends who aren't sure of how to react or help when their loved one is in pain?

Dr. Taylor: Absolutely. In fact, in our institution, helping the family to understand causes and treatment of a patient's particular chronic pain condition is considered essential.

patrisha99_webmd: When a caregiver is suffering as much as the patient, such as worrying, what can I do to help relieve him of some stress? I know he is depressed, but won't admit he needs help, too!

Dr. Taylor: At some point it is important to bridge this gap of understanding. People in the caregiver role are frequently so focused on aiding the suffering of the person in pain, that they lose sight of taking care of their own emotional needs. One thing that might help is to search the web for information on the stress of caregiving, just to help him have permission to understand that he too has been deeply affected by your condition. The stress of caregiving has now been shown not only to affect the emotional health of caregivers, but also eventually their physical health. This research was in controlled clinical trials, so it has a very scientific foundation.

anglck_webmd: How can you relate to their pain, so they feel like you understand what they're going through?

Dr. Taylor: You can't. You can simply love them, and care for them, but unless you've had the experience they're having, I think it's literally impossible to completely relate. That's why it's so important for patients with chronic pain to share their experience with others in chronic pain. The proliferation of support groups in the U.S. is no accident. These support groups help patients in a way that a counselor cannot accomplish alone. In terms of what you can do, take care of yourself, take care of your own needs, do what you can do. Try to direct your spouse's attention to positive things in your life. Many chronic pain patients forget how to have fun.

patrisha99_webmd: Has your Institute thought about having a support group for your patients in chronic pain?

Dr. Taylor: Yes, we have. We have a support group for graduates of our multidisciplinary pain program, but we don't have an open-to-the-public pain support group here. And I think that's a good idea. We would love to have you help us get that together. :o) Biofeedback, tai chi and motion therapy, and Tibetan medicine practices.

rockerlady_webmd: I have two children, ages five and eight. How do I explain the pain to them?

Dr. Taylor: Well, that's a difficult one. I think there are some aspects of pain that you can't really explain to children. They certainly know what an "owee" is, but the kind of pain one experiences in chronic intractable pain I think is beyond what a child can understand. Thankfully so. What you can tell them is that you have a problem, and explain the ways in which it limits your abilities, or ability, to do things with them.

anglck_webmd: How do you deal with someone being conked out on pain drugs all the time?

Dr. Taylor: Opioids in large doses have brought about almost miracles in the treatment of pain. Unfortunately, they have a down side. I try to explain to patients that we are looking for a balance between maintaining the highest level of function that we can, and relieving their suffering. In an end-of-life situation, of cancer or some other terminal disease, we understandably will sometimes give patients such large doses of narcotics that they're not very conscious. This, however, is not an appropriate treatment for chronic pain that is not terminal. Patients who self-treat, implore the physician to give them the kind of doses of narcotics that in a sense make them "out of it" are frequently not dealing with the emotional aspect of their pain.

Pain has three components: The nociceptive, or the nerve part of pain; the affective, which is how we feel about our pain; and the motivational. What is our life about? Where are we going? What are we engaged in? When patients face the chronic daily grind of intractable pain, sometimes they give up emotionally and use narcotics to treat their emotional pain. My advice would be to get your spouse seen by a good psychiatrist who understands pain, or at the very least, get a pain specialist to lower the narcotic dose, and add an antidepressant to their treatment.

Moderator: Question: My wife and I are looking into complementary therapies for relief of her pain. Are there certain herbs/supplements or therapies that have been shown to be effective in pain relief?

Dr. Taylor: This is not my area of expertise. However, I know of naturopathic physicians, and osteopaths and acupuncturists in this country who use a wide variety of alternative methods to treat pain. There are, however, great variances in the skill levels of various practitioners. Unfortunate as it is, you have to shop around and ask around. Try someone that you've heard good things about, and check them out for the kind of atmosphere in their practice, their level of professionalism, the cost, and what results you get.

Moderator: How do you keep from always putting your own needs last and feeling selfish when you finally do get around to your needs?

Dr. Taylor: Sounds like you are the caregiver. If so, this sometimes requires you getting therapy. And let me help you with that. I can save you a lot of visits to the therapist with this one phrase, "Your needs are just as important."

anglck_webmd: How do you stay positive when they're always in a bad mood?

Dr. Taylor: Again, this comes down to self-care. Sometimes, ultimately, the self-preservation. Just as we encourage chronic pain sufferers to address their emotional needs, it is imperative that caregivers do the same. I attended the world congress of pain in Germany a year ago, and heard an interesting presentation on the effect of the kind of emotional support that caregivers provide. In this study of low back pain patients, brain imaging scans were done that showed a colorful picture of the activated areas of pain perception in the brain. Half of the people in the study were shown to have solicitous spouses. By that, the researcher meant spouses that did things for the pain patient, stroke them, encourage them, defer to them. Interestingly, the group with solicitous spouses on brain scan had an area that lit up in the brain representing the extent of their pain that was almost twice as large as those who did not have solicitous spouses. In a sense, pain can become something that we reward with our behavior. And as human beings, we are creatures of habit, and habit keeps the nervous system fixed in a certain way. Sometimes the wrong kind of support may do more harm than good.

patrisha99_webmd: When I want to plan on doing something I think would be fun for both of us, my caregiver nixes it because he is afraid I will be in worse pain or afraid I might hurt myself. How do I get him to have some fun with me.

Dr. Taylor: Tell him that that's your choice. And that you are willing to suffer those consequences. Sometimes I tell my patients that we have to get over the illusion that we get to choose between joy and pain. Frequently, what we get to choose is which pain we want. The pain of sitting home alone with our pain, or a brief, but inspiring respite from it, followed by more pain. I'd take the trip.

Moderator: Question: My husband feels helpless and a burden when he's in pain so much. How can I make him feel useful?

Dr. Taylor: You can't make him feel useful during that period. But you can tell him that it's okay. Often what gets us in trouble, or binds us emotionally, is where we set our expectations. Is it possible that you do feel he's a burden? And it may be that he is. But again, it may be worth it to you, because of your love for him and because of the value of your relationship. It is ironic, but frequently true, that having a chronic illness, and living with someone with a chronic illness, are both very difficult predicaments. There aren't any rule books, but the basic touch stone of proper mental health, having honesty, or being honest, treating each other with dignity and respect, and sharing your true feelings is of value.

Moderator: Question: How can I help my mother when she gets into her depressed states? I also live out of state from her and the distance brings along a lot of guilt.

Dr. Taylor: It sounds like two people are depressed. It's very difficult to provide long distance support that one is comfortable with for a parent. Do the things you can do. Encourage her to get on an antidepressant, to ask her primary care provider or pain specialist. If necessary, call their office and share your concerns. We are frequently grateful to hear from family members letting us know those concerns. Frequently patients are in denial and don't share that information, and unfortunately, many physicians forget to ask.

Moderator: Is depression, in both the patient and the caregiver, often overlooked by pain specialists?

Dr. Taylor: Yes. In fact, depression in general is often overlooked. Other than anxiety disorders, depression and depressive disorders, are the most frequent reason for a visit to a physician, though physicians are frequently oblivious to it. In this day and age with HMOs (Health Maintenance Organizations), there are sometimes incentives that are subtle not to treat it. The HMO here in Forth Worth, Texas, the largest medication expense for them is for antidepressants. What we usually see with that is stress-related disorders.

Moderator: You mentioned the physical health of the caregiver earlier. What do you usually see manifesting physically?

Dr. Taylor: Vague body pains, digestive disorders, ulcers, headaches, and frequently, these are the kinds of disorders that don't respond well to interventions because they're related to stress, to a constant state of worry and anxiety.

Moderator: Anything else you'd like to add on this topic, Dr. Taylor?

Dr. Taylor: My last words of advice would be for the caregivers to take care of themselves. And although this is easily said, it frequently requires the same kind of effort and focus that we ask of the chronic pain sufferer on their road to recovery.

Moderator: Thank you so much, Dr. Taylor, for joining us again to address this important topic. Thanks, everyone, for joining in today!

The opinions expressed by Dr. Taylor are his and his alone. If you have questions about your health, you should consult your personal physician. This event is meant for informational purposes only.