When the body heals but the hurt continues

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Pain is a reality of life. We all experience it at one time or another. Most of the time pain is helpful. It lets us know we have done something that we should discontinue.

With the classic example of touching a hot stove, pain tells the brain there is danger, the brain signals the arm and hand to move away from the heat. If there was physical trauma (a burn) the pain persists for a time but stops as the physical trauma heals.

However, sometimes after an injury or illness, the pain persists and more care is required. Traditionally, over-the-counter, non-steroidal or anti-inflammatory pain medications are recommended along with comfort measures such as ice packs or after the swelling subsides, a heating pad, etc. If the pain persists or is severe, the next line of treatment traditionally has been stronger pain medication, including narcotic or opioid medications. Most of the time, these medications can reduce the pain while the body is healing. When the pain is gone and physical functioning returns to normal, they are discontinued. All is well.

However, in recent years it has become increasingly clear that opioids are not entirely harmless and not always helpful. They can have vexing side effects such as persistent somnolence, lethargy and gastrointestinal upset (including severe constipation). Longer term use of opioids may lead to dependence and addiction, and they may not eliminate the pain. This is a serious risk for individuals who develop chronic pain. If lower doses are not helpful, the dosage may be gradually increased with the best intentions, until maximum dosage is reached and yet the pain persists. Pain that persists beyond three months without significant improvement is considered chronic pain.

Chronic pain is more common than one might think among children and youth. There is a lot of variability in the published statistics, but studies suggest that it occurs in 15 to 40 percent of children and adolescents. In many cases, children and adolescents with chronic pain also develop functional disability. They stop attending school, discontinue sports or other physical activities, drop out of social activities and may stop leaving their home or even their bed. This is a distressing condition for the youths themselves and their families. The child with chronic pain and functional disability may become the central focus for one or more caregivers, which can severely impact family life. Parents become distressed, frightened for their child, and frustrated as they seek out medical specialists and request sophisticated and costly medical tests seeking an explanation as to why the pain won’t go away. Often this quest for an answer leads to patients visiting more physicians who prescribe more types of opioid pain and sleep medication and at increased dosages. The child becomes overmedicated, demoralized, withdrawn, anxious and depressed. The child avoids situations that he or she knows or fears will make the pain worse. The child may become so inactive and physically deconditioned that other pain may evolve, such as that related to inactivity, muscle tension and atypical postures.

It is becoming increasingly well-recognized that opioids are not the answer and are typically ineffective for chronic pain. A great deal of research has been and continues to be focused on the problem of chronic pain. It is now understood that chronic pain occurs when there has been a change in the central nervous system resulting in continued signaling of the brain with sensations that are interpreted as pain. Also, signals from the brain that acknowledge and modulate the pain, ordinarily turn down the intensity or “volume,” but become confused and no longer work normally. There is a central sensitization or amplification of physical sensations that causes them to be experienced as severe pain. The child will consistently report a rating of 10 (or higher) on a pain scale where 10 is the worst pain ever experienced. This is when a different approach is needed and the focus becomes rehabilitation.

The Kennedy Krieger Institute provides interdisciplinary rehabilitation services based on a biopsychosocial model of chronic pain, offering a continuum of care ranging from outpatient assessment and recommendations to ongoing outpatient cognitive-behavioral and physical therapy services, to intensive day hospital or inpatient rehabilitation. The interdisciplinary services may include anesthesiology, physical therapy, rehabilitation medicine, and cognitive-behavioral therapy. At the more intensive day hospital or inpatient levels, social work provides emotional support for parents, and educational, neuropsychological, occupational therapy, recreation therapy and psychiatry services also may be included. The combined therapeutic focus is on helping the child and family learn new ways to think about pain, new skills for coping with pain, and also provides systematic exposure to gradually increasing physical and social activities. Youths are gradually weaned from ineffective narcotic medications, and they may be prescribed other medications that can calm inflamed or overactive nerves as well as help manage anxiety and depressive symptoms while not being addictive. The child and family receive hopeful encouragement and coaching on the use of cognitive-behavioral pain and anxiety management skills. Children learn to confront and fight back against their pain and reclaim their lives by gradually returning to school, physical activities, and participation in social, family and community life. The process can be slow and the rate of progress variable. Setbacks may occur, but the therapists provide support and help motivate the child’s continuing effort and adherence to a long-term plan that can be transformational. In time the pain may gradually dissipate and eventually fade from the child’s daily focus and priorities. Children learn to follow their personal values to motivate their daily functioning and pursue their goals. Emphasis is placed on making small gains toward longer-term goals and avoiding “all or nothing” thinking about progress.

With gradual increases in physical functioning and social engagement, reductions in anxiety, depression and emotional distress are typically achieved. Children learn that their pain is manageable and no longer the catastrophe that they once perceived it to be. They take pride in their accomplishments and regain optimism about their daily lives and future. Parents and other caregivers receive behavioral training helping them to focus their attention and support on functional and healthy behavior. They are discouraged from constantly checking on their child’s pain and from allowing activity avoidance in response to pain complaints or distress. Importantly, children and adolescents are helped to get off of and avoid dependence on opioid medication, decreasing their risk of addiction.

The chronic pain rehabilitation approach as offered at Kennedy Krieger is becoming the standard of care for youth with chronic or recurrent pain. There are few programs world-wide that provide the continuum of rehabilitation services offered at Kennedy Krieger.

Early diagnosis and referral to a chronic pain rehabilitation program is recommended as soon as it becomes clear that the pain is persisting beyond three months. Early referral for interdisciplinary rehabilitation may provide the best chance of avoiding chronic physical and emotional disability and also may prevent opioid addiction.

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