Chapter 6

Kids and chronic pain

Being a kid and living with chronic pain isn’t that unusual. Like adults, children and adolescents experience everyday hurts that are unpleasant. But quite a few kids live with the kind of pain that’s always sort of in the background or pain that comes and goes but never really goes away.

Pain may affect a specific part of the body, as joint pain, headaches or abdominal pain. It can also involve many regions of the body at once, as in generalized body pain.

For kids experiencing constant pain, the pain is more than simple bumps and bruises. And in many cases, these kids develop difficulties carrying on their regular activities and routines. Some kids also experience depression, medication side effects or anxiety. For these young people, life just isn’t the same anymore.

If you know or have a child that’s dealing with chronic pain, this chapter is for you. You’ll learn what types of chronic pain are most common in kids, the effects chronic pain can have on your child’s life and your family life, how the pain can be managed, and what you can do to move on in spite of the pain.

Common types of pain

Chronic pain in children can range from something as familiar as a headache to the rarer facial pain. Surveys of thousands of different kids and research from chronic pain clinics suggest that the most common types of chronic pain in children and adolescents include headaches (also the most studied type), abdominal pain, and muscular and joint pain. Other common forms include generalized pain and complex regional pain syndrome.

Headaches

Based on surveys, about 1 out of every 4 kids experiences headache at least once a week. One type of headache is migraine, which can cause pain so sharp that all your child can think about is finding a dark, quiet place to lie down. It can also make him or her feel nauseated and want to throw up.

Another common type of headache is tension type. This kind of headache can make your child feel as if his or her head is wrapped in a tight band. When headache occurs more than 15 days a month for more than three months, it’s called chronic daily headache.

Abdominal pain

Estimates vary widely, but up to 1 in 5 kids experiences persistent abdominal pain. A smaller percentage of kids experiences abdominal pain that’s bad enough to keep them from doing regular activities, such as going to school or playing sports. In some kids, abdominal pain goes hand in hand with headache or back pain. Some kids lose their appetites and have difficulty eating, resulting in weight loss. While for others, abdominal pain may lead to weight gain.

Muscular and joint pain

Another common type of chronic pain affects your muscles and joints (musculoskeletal pain). Back pain is one example. Some studies indicate that about 1 in 5 kids experiences back pain at least once a month. Other studies have found that 1 out of every 5 kids has back pain every week.

Complex regional pain syndrome

Some kids experience a type of chronic pain, usually in a leg or an arm, called complex regional pain syndrome (CRPS). In addition to intense burning pain, the leg or arm may be sensitive to touch, feel cooler than other parts of the body and appear swollen. In many cases, the cause of the pain can’t be explained. Generally, doctors think it may be a result of the body’s nervous system being overly sensitive to stimuli. Similar to other chronic pain conditions, CRPS can be a challenge because there’s no single test that can diagnose it, making it more difficult and time-consuming to evaluate and treat.

Generalized pain

This kind of chronic pain can affect children and adolescents, as well as adults. In addition to causing general achiness, this type of pain can make your child feel extremely tired, even after sleeping for a long period of time. Sleep itself is often restless and disrupted by movement of legs or arms and periodic waking.

Unknown pain

For some kids, the cause of their pain is never discovered. But this doesn’t mean that the pain isn’t real or that it doesn’t require management. For these children and their families, the situation can be especially frustrating. They’ve often been through countless evaluations, seen a host of specialists and tried any number of treatments.

Disruptions to daily life

Kids respond to chronic pain in a variety of ways. For many of them, the pain is a mild nuisance and it doesn’t prevent them from going to school and doing the things they enjoy.

For some kids, chronic pain brings with it a more pervasive set of problems. As with adults, kids can get stuck in a pain cycle that undermines their ability to move confidently through daily activities. Realizing there may be no quick fix for the pain can make both a child and a parent feel as if they’ve lost control, increasing frustration and sadness and decreasing the ability to focus on anything else while looking for a cure.

As a parent, your first instinct is to protect your child when he or she is hurting. But focusing solely on your child’s pain while overlooking other aspects of life can have some serious unintended consequences. Take a look at the toll chronic pain can take on a child’s life.

Loss of routine

If your child wakes up in pain, it’s natural for you to tell your child to stay at home until he or she feels better. But with chronic pain, this can happen so often that your child is missing several days of school a month or even a week. Pain becomes the sole deciding factor for whether your child gets up and goes to school or goes to play practice or a soccer game. An erratic schedule can also lead to irregular sleep patterns, which can lead to loss of energy and irritability.

Social and developmental losses

Not only does missing school represent an academic loss, it results in missed opportunities for your child to socialize and hang out with his or her friends. And the more your child is isolated, the less likely he or she will be to try to catch up with friendships. School is also an environment that promotes achievement of developmental milestones, such as learning to manage time and developing personal responsibility.

Emotional stress and upheaval

Realizing how much the pain is robbing your child and your family life can make everyone involved feel stressed. Grieving the loss of a previous way of life and wondering what will come next adds to the family’s anxiety and can lead to anger and resentment. Some children, and even parents, start to feel hopeless and depressed, which can lead to further withdrawal and isolation.

Physical deconditioning

It’s easy to let your child withdraw from physical activities for fear of increasing pain symptoms. But this can result in rest that never ends. The less active your child becomes, the less equipped he or she is to handle even small amounts of activity. Called deconditioning, this lack of activity can lead to a downward spiral of fatigue, depression, stress and muscle tension. This, in turn, produces increased pain, starting the cycle all over again.

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When your child has POTS

Kids that come to Mayo Clinic’s Pediatric Pain Rehabilitation Program have a variety of chronic pain disorders. Headache (30 percent) and abdominal pain (32 percent) are the most frequent pain disorders. But a significant percentage of kids (31 percent) also have a diagnosis of postural orthostatic-tachycardic syndrome (POTS).

What is it?

POTS is a condition that occurs when your autonomic nervous system doesn’t work as it should. Your autonomic nerves control your involuntary body functions such as your blood pressure and heart rate. Nerve fibers in your autonomic nervous system normally direct how fast your heart needs to pump blood, where that blood needs to go and how it should flow. With POTS, these nerves may fire differently, so blood may pool in the legs more than normal upon standing. This produces a variety of signs and symptoms, one of which is postural orthostatic tachycardia — a heart rate that speeds up excessively when you go from a sitting to a standing position. This can make you feel faint and lightheaded.

Other common symptoms may include chest pain, shortness of breath, vision problems, fatigue, weakness, headache, nausea, bloating, sleep problems, sweating, and heat or cold intolerance.

POTS often begins in the early teen years and is typically triggered by a serious injury or illness, such as a viral infection. Symptoms of POTS can vary widely from one person to the next. For example, some teens experience mild symptoms most of the time. Others also experience “storms,” periods where many symptoms converge and then lessen.

Getting to a diagnosis

If you’re a parent of a child with POTS, you’re probably all too familiar with emergency rooms, doctor’s offices, tests and more tests. It’s not easy dealing with the uncertainty that often precedes a diagnosis of POTS. Because the symptoms can indicate any number of medical conditions, people with POTS may go through many evaluations and see many health care providers before arriving at a diagnosis. Once POTS is suspected, however, the diagnosis can be made using a tilt table test. During the test, you lie on an examination table that’s tilted into different positions. Changes in your heart rate and blood pressure are recorded with changes in position.

Managing symptoms

The good news is most teens grow out of POTS by the time they reach early adulthood. In the meantime, the condition can be managed with diet, exercise and medications. Increasing fluid and salt intake on a daily basis enhances blood flow, while regular aerobic exercise increases energy and helps retrain the autonomic nervous system to regulate blood flow correctly. Medications, such as beta blockers, may be prescribed to improve heart rate, chest pain and irregular heartbeats. Some kids also benefit from talking to a counselor or other support person, to help them deal with anxiety, sadness or just the stress of coping with a chronic condition.

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Managing chronic pain

Many families who have kids with chronic pain have gone through extensive searches for the cause of their child’s pain. They may have seen multiple doctors, therapists and other specialists and endured a range of tests and evaluations. As a parent of a child with chronic pain, you may have had experiences with medical professionals who seemed as if they didn’t listen to your concerns, or who may have implied that chronic pain is not a real health issue.

Chronic pain is real. What’s important to realize is that even if a cause or a cure is never found, the pain can be managed in such a way that you and your child and your family can still have a life despite the pain.

Ironically, as you start doing the things you have to and want to do, the pain may lessen. It’s best not to pay too much attention to your daily pain level. Chances of improvement seem to be best when your pain isn’t the focus of your attention.

Parts 2 and 3 of this book are all about treating and managing chronic pain. Much of the information is applicable to kids and teens, as well as adults. Browsing through the chapters will give you useful coping tools, but there are some issues specific to kids with chronic pain, which you can read about here.

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What are pain behaviors?

Pain behaviors are the things your child might say or do that signal he or she is in pain. Examples might include wincing, groaning or frequently talking about pain. More subtle pain behaviors might include avoiding others, being irritable with family and friends, and avoiding activities.

Pain behaviors are a natural response to acute pain, but with chronic pain they can become a habit. Your child may exhibit pain behaviors to get you to share in his or her discomfort or to draw attention and support from others.

The problem is pain behaviors become a constant reminder of pain, and they consume a great deal of energy. To increase your child’s confidence and ability to cope with chronic pain, try to discourage pain behaviors.

When your child exhibits pain behaviors, it’s easy for your reactions to fall into one of two categories:

• Lenient. You attempt to ease the pain or pain behavior by assuming your child’s responsibilities or eliminating his or her chores, for example.
• Critical. You blame your child for his or her behavior with a response such as “Oh, no! Not this again.”

To move the focus away from the pain, try taking a balanced approach and remaining neutral toward pain behaviors. This doesn’t mean you’re unsympathetic. It just means you don’t respond to the behavior.

A neutral approach allows your child to develop his or her own course of action in response to chronic pain. Strategies your child can use to cope more effectively with chronic pain include relaxation techniques, a cool compress, thinking about pain differently or engaging in a fun activity. Some kids may not need help once they’ve learned these coping techniques, but others may find it helpful if a parent reminds them to use pain management strategies.

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Find a doctor you trust

Whether you’re pursuing a diagnosis for your child’s pain or you’ve already arrived at one — even if the cause is unexplained — it’s vital that you and your child have a relationship with a health professional you can trust. Preferably, this is a doctor experienced in helping kids with chronic pain. But at a minimum it should be a person who:

• Knows your child’s history
• Is willing to help you find ways to improve your child’s quality of life, including appropriate referrals to other specialists, such as a physical or occupational therapists
• Can help your family develop a chronic pain management plan
• Is attentive to your child’s whole health, including evaluating and treating conditions unrelated to chronic pain but that might otherwise be overlooked

Having a doctor who you feel is an ally and a partner in overseeing your child’s health can help ease some of the stress of worrying about your child’s condition. A caring and thoughtful health professional can also help allay fears that you’re missing something important or that you’re not doing enough.

Approach medications with caution

When used appropriately, medications are useful. For some people and in certain situations, they can help reduce pain with limited side effects. Pain relievers may be used to control pain that’s more intense than usual. In addition, medications often can effectively treat other conditions that may accompany chronic pain, such as depression or anxiety.

In general, though, medications can’t cure chronic pain and they shouldn’t be viewed as the answer to pain. Among other things, long-term use of medications can create its own set of problems, including increased pain. Overuse of pain relievers to treat headaches, for example, can lead to further headaches resulting from medication overuse.

With certain medications, there’s also the risk of abuse. Misuse of medications, a serious and growing problem, is discussed beginning on this page.

For most kids, what they do each day — exercising, eating well, using relaxation and mind and body therapies, following a daily routine, and going to school — does more to help beat chronic pain than does a daily dose of medication.

7 steps to getting back into life

You can help your child cope with chronic pain by encouraging him or her to engage in strategies that will put pain in proper focus and free up mental and physical energy for other more enjoyable aspects of life. Studies show that replacing dysfunctional behaviors, such as pain behaviors with more adaptive ones, such as positive thinking, can result in significantly less pain, a better quality of life and better general health.

When parents approach a child’s chronic pain with the goal of keeping the child’s life as normal and productive as possible, everyone — child, parents and the entire family — benefits. Children, and their parents, report decreased pain and less interference with their daily activities.

Following are key concepts used in Mayo Clinic’s Pediatric Pain Rehabilitation Program. They’re designed to promote active engagement in life and successful self-management of pain.

The majority of adolescents who’ve gone through the program indicated that they “agree” or “strongly agree” that the program was beneficial in helping them learn to live well in spite of pain. But you don’t have to go through the program to benefit from the strategies it employs.

Read through the steps that follow and think about what might help you and your child better cope with chronic pain.

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Why go through all the effort?

Sometimes you or your child may wonder why go through all the effort of exercising, eating and sleeping well, practicing relaxation, and going to school when the pain is still there?

But what you do matters. Your body sends pain signals through a system of nerves in your brain and spinal cord. To stop these signals from reaching their destination, your body releases its own painkilling chemicals, called endorphins, to help block pain signals.

Positive thoughts and feelings, physical activity, relaxation, and healthy relationships all help boost your body’s ability to release the endorphins needed to block pain signals and retrain your body’s nerve pathways to respond in ways that lessen pain. They also influence how you cope with painful or stressful situations.

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1. Send your child to school

Kids thrive on consistency and school is an important constant in almost every child’s life. In addition to the academic gains, going to school every day provides your child with a number of benefits. For one, it provides structure to your child’s day. Irregular sleep, unpredictable meal schedules and erratic activity levels can wear your child down and drain his or her energy, both of which can make pain worse. Attending school can help your child:

• Get up at the same time every morning
• Eat meals at the same time each day
• Reconnect with friends
• Avoid boredom
• Focus on something other than pain

If your child has been absent from school for a long time, it may be best for your child to return gradually — perhaps attending school for an hour or two a day the first week, then gradually increasing to half days and whole days.

Work with school staff to develop a plan for your child to manage his or her pain at school that follows the same guidelines as the plan you use at home. For example, at peak pain periods, your child might lie down for a few moments in the nurse’s office or retreat to a quiet place in the school to practice relaxation strategies. In general, you want to avoid:

• Having school staff send your child home due to pain. Ask them to treat your child as much like any other child as possible.
• Requesting a reduced workload. If your child has missed a significant amount of school due to chronic pain, he or she should work with teachers to develop a reasonable plan for making up missed schoolwork.
• Allowing your child to miss school because of pain, even if it’s a little worse than usual. In rare cases, if pain forces your child to miss school if he or she can’t do chores or is unable to fulfill other responsibilities, don’t allow privileges, such as watching television, playing games or doing other activities.

2. Encourage exercise

People often think that getting up and moving around or exercising can make pain worse. In reality, exercise can help your child feel better. It can take the edge off of the pain and ease feelings of stress, sadness and frustration. Exercise is important because it:

• Causes the body to release chemicals that help block pain impulses from reaching the brain (endorphins)
• Strengthens muscles and increases flexibility
• Lowers stress hormones

Encourage your child to exercise or better yet, exercise with him or her. Try walking, swimming or biking — whatever you enjoy doing together. Start out slow and gradually increase the time as your child develops more stamina. At first, your child may experience an increase in pain. Don’t let that stop him or her from exercising.

3. Practice mind and body therapies

Mind and body medicine uses the power of the mind to improve health. Mind and body therapies are more than simple distractions. They help relieve pain by eliminating tension and preventing muscle spasms. They also alter the body’s chemistry by decreasing its production of stress hormones and increasing its release of pain-fighting chemicals such as endorphins and enkephalins (see Chapter 10 and Chapter 16).

4. Help your child sleep and eat well

Getting a good night’s sleep can help your child feel refreshed and ready to face the day. Most teens, for example, need 8½ to 9½ hours of sleep a night to feel rested. Younger children typically need slightly more sleep.

Trying to fall asleep when you’re in pain can be frustrating, though. To maximize your child’s chances of getting a good night’s rest, consider these tips:

• Maintain a consistent bedtime and waking time. Sleeping in an extra hour on the weekends is OK, but too much more than that can interfere with sleep cycles.
• Keep the bedroom cool, dark and quiet at nighttime.
• Have your child stay away from pop, sugar and big meals before bedtime. Skip caffeine after 4 p.m.
• Avoid keeping a TV, computer, cellphone or other electronic devices in the bedroom, which can distract from sleep.
• Help your child clear his or her mind by writing down impending to-do items or creating a list of action items for the next day.

Eating a balanced diet is also important because it can give your child more energy and help him or her maintain a healthy weight. Encourage your son or daughter to eat more fruit, vegetables and whole grains. Go easy on soda and processed foods such as chips and cookies. Serve moderate portions.

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Plan ahead for difficult days

Even after your child has learned to manage pain, he or she will still have difficult days on occasion. Together, make a plan for these times. Decide what strategies to employ when the pain gets bad and where your child can go to relax, including at school. The goal is to minimize disruptiveness and return to everyday activities as quickly as possible. See Chapter 18 for tips on setting up a pain management plan for difficult days.

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5. Respond consistently

Two parents in the same house can have very different styles and strategies for dealing with a child who has chronic pain. Because consistency is important, talk with your partner about how you’ll handle your child’s pain behaviors. If you find it difficult to agree, talk to a supportive third party, such as your child’s doctor or a family therapist.

In addition to responding consistently, it’s important for parents to lean on and support each other during difficult times. Turn toward your marriage even as you work to increase your child’s confidence and independence in managing chronic pain.

6. Help siblings cope

When a child with pain becomes the focus of all the parents’ attention, brothers and sisters may feel isolated, angry or jealous. They may also feel guilty for having these feelings.

As regularly as possible, try to spend one-on-one time with all of your children and be open to talking to them about their brother’s or sister’s chronic pain. Encourage your other children to express how it affects them. Talk about how your other children can help your child with pain feel more upbeat and positive and how they can provide distractions when appropriate.

7. Have fun

Focusing on your child’s pain can make you forget about activities and outings you used to enjoy, both with your child and as a family. Regularly take time to do something fun, whether it’s taking a full-blown vacation or just pausing to be silly and laugh.

Remind yourself that your child isn’t defined by chronic pain. Sit back and take stock of his or her evolving identity: What’s unique about your child’s personality? What are the things that make her tick? What makes him laugh? What are your child’s strengths? Capitalize on those.

Enjoy your time together.

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When to consider a pain rehab program

If you’ve tried everything, including the suggestions in this chapter, and nothing is really working, you might consider enrolling in a pediatric pain rehabilitation program. These programs incorporate multiple disciplines, including pain specialists, physical and occupational therapists, and psychologists.

Pain rehabilitation programs are proven ways of improving quality of life, physical conditioning and depression. They can also help your child discontinue medications and return to school and social and recreational activities. Generally, parents are involved in a portion of the program, as well.

If you’re wondering whether a pain rehab program is right for your child, ask yourself these questions:

• Is my child’s life focused on pain and what he or she is not able to do, rather than what he or she is able to do in spite of the pain?
• Is my child missing school and social events due to pain?
• Are my child’s doctors telling me there is nothing further they can do to relieve the pain? Do they tell me that we need to learn to get on with life?
• Am I truly concerned about the long-term effects of my child taking pain medications?
• Is my family’s well-being affected because of my child’s chronic pain?
• Is my child’s recovery from injury or illness taking much longer than his or her doctors or I expected?
• Is my child not able to commit to sports or social events because his or her pain may be higher that day?

If you answered yes to one or more of these questions, then a pediatric pain rehab program may be appropriate.

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