Acute pain that calls out to warn you — “Hey, don’t walk on this broken leg!” — may be unpleasant, but it’s also protective. That acute pain is letting you know that a part of your body needs to heal, or in some other way needs extra attention, said Dr. Neil Schechter, the director of the chronic pain clinic at Boston Children’s Hospital.
That’s very different, he said, from chronic pain that goes on over the course of months, whether abdominal pain or headache or musculoskeletal — it may persist and be incapacitating, because “the pain has become the disease.”
That doesn’t mean the pain is any less painful for the person experiencing it.
“There is really strong evidence supporting the psychological treatment for chronic pain, and that doesn’t imply that the pain itself is a psychological problem,” said Rachael Coakley, a psychologist who is the director of clinical innovation and outreach in pain medicine at Boston Children’s Hospital. Her book, “When Your Child Hurts,” is an excellent resource for parents.
“When you’re a kid and you’ve had pain for a really long time, a lot of that is an experience of not having control over what’s happening in your body,” said Anna C. Wilson, a pediatric pain psychologist at Oregon Health and Science University. “Relaxation and other biobehavioral techniques help kids gain a sense of control.”
She tells patients, “Your pain is absolutely real, and chronic pain in particular is a neurologic problem.” She recommended TED Talks by Dr. Elliot Krane, an anesthesiologist, and Lorimer Moseley, a neuroscience professor, to help explain chronic pain.
Chronic pain develops, Dr. Schechter said, when there is an underlying biological vulnerability, either inherited or resulting from stressors like infections or procedures or traumas, and then a triggering event, such as a gastrointestinal infection or an injury.
As many as one in five children may experience chronic pain, which is defined as lasting for three months or more, Dr. Coakley said. They may reduce their activities because of the pain, missing school and falling behind, which brings additional stress and anxiety. They may also need psychological help with anxiety and depression because they have lived with chronic pain and its consequences.
But children often do better in recovering from chronic pain than adults do, Dr. Schechter said, because their brains and their nervous systems are more plastic. With proper treatment, “the majority of children are significantly helped with pain problems, and for many the pain disappears completely,” he said.
“In the United States, there are probably about 80 million children who have missed school in the last months because of pain,” said Dr. Stefan Friedrichsdorf, the medical director of pain medicine and palliative care at Children’s Minnesota.
The best place for these children to get care, Dr. Friedrichsdorf said, is in a pediatric pain clinic. Ideally, the children are seen by a team including a physician or nurse practitioner, a designated pain psychologist, a physical therapist, and a social worker whose job includes taking care of the parents.
Pediatric pain clinics are available in 26 states. If there is no clinic near where a family lives, or if the waiting list is prohibitively long, Dr. Friedrichsdorf recommends that parents try to put a team together themselves: Work with your pediatrician to find a physical therapist and a psychologist who can help.
The most important message for these children and parents, who often have already gone from doctor to doctor experiencing one diagnostic procedure after another, he said, is “we explain to them why the pain is real, and a large number of the kids actually start crying because they feel not believed.” The experts reassure children and their families that the pain will usually go away, but it will take a lot of hard work.
Children who live with chronic pain have often cut back all their normal activities, and the priority, Dr. Friedrichsdorf said, is to get “the four S’s” back to normal: school, sports, social life and sleep. “First you go back to school full time, and second you get better; it’s not the other way around,” he said.
There may be a lot of fear and anxiety that movement and exercise will hurt, Dr. Wilson said, but “the pain they’re experiencing is not a message that something threatening or dangerous is happening, and once the family understands that, it’s easier to work toward having the kid do more movement, and movement is really essential.” Chronic pain, Dr. Schechter said, “is hurtful but not harmful.”
Dr. Coakley said: “I’ll often say that having chronic pain is like a tricycle with three flat tires, and to get them going again we have to fill each of the tires.” One tire might be filled with medications — and rather than painkillers, these might include drugs that treat the nervous system, from certain antidepressants to seizure medications. Another tire might be filled with an activity program, and a third with cognitive behavioral therapy, she said.
Children can learn mind-body techniques such as diaphragmatic breathing, guided imagery, mindfulness and biofeedback. Dr. Coakley compared these to “dimmer switches” for the nervous system, dialing down the sensitivity. And children and parents can use what she called “circuit-breaker strategies” to disrupt the habit cycles and behavior patterns that have built up around chronic pain.
She asks parents to stop checking in frequently about how a child is feeling so children won’t be thinking, “how do I feel now, do I hurt, and how much?”
Christine Chambers, a professor and children’s pain researcher at Dalhousie University in Halifax, Nova Scotia, said she tells families that “the pain system is supposed to work like your body’s alarm system and tell you when something is wrong.” Usually that alarm system works very well for acute pain, she said, but “when you have a lot of pain early in life, the alarm system can start to malfunction, and you see the pain alarm system going off even though there is no acute reason.”
Children need to learn strategies to turn the oversensitive alarm down, or to pay less attention to it.
Dr. Coakley founded a program called the Comfort Ability, which offers one-day workshops at sites around the country for adolescents and their parents, teaching strategies for understanding and managing chronic pain (financial assistance is often available, and there are many resources on the website as well).
“How we approach and treat chronic pain often feels counterintuitive at the beginning of the journey,” said Dr. Coakley. Parents may feel that focusing on pain management means that the medical system has stopped looking for the underlying problem, she said, but in fact, “the vast majority of the kids we treat in this multidisciplinary approach get better — this is actually the treatment for the problem.”