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5% of US teens live with life altering chronic pain

Acute pain is protective. With chronic pain, the pain itself becomes the disease.

Teen Pain

Although adolescents and young adults are often considered healthy, chronic pain is surprisingly common. Roughly five percent of adolescents experience life changing chronic pain, with an estimated cost of over $19 billion per year in the United States (Groenewald, Essner, Wright, Fesinmeyer, & Palermo, 2014).

Chronic pain has serious physical and mental health consequences, interfering with school completion, the transition to work, and social and autonomy development. Adolescent chronic pain also has significant costs for parents, interfering with both work and family functioning.



And treating pain is hard. (That’s why we developed this app!) Treatment adherence requires commitment to a treatment plan that often increases short-term pain and has significant costs in terms of time, effort, and lifestyle restrictions. You need to exercise and stop eating food that tastes great. (My son experiences severe chronic pain.  His worst trigger: pizza.) You need to push yourself out the door when every instinct tells you should crawl under the covers and sleep. It hurts. A lot.  

Because pain triggers are complex, it is likely that progress will be uneven, making it difficult to connect short-term behavioral change with pain reduction. Sometimes you drink caffeine and it makes you feel better. Sometimes, it makes things worse. Sometimes exercise makes you feel immediately worse. But you exercise every day and your pain goes down.  

And pain is random. The joke in our house is that it varies with cosmic rays. There is an random element to chronic pain that makes it really hard to draw relationships between cause and effect.

When Pain Is The Disease

There are two types of pain: acute and chronic. They are different. And how we think about them can make a huge difference in how we function with chronic pain.  

Acute pain is functional in that it alerts us to tissue damage in need of care. Chronic pain, on the other hand, is a pathological state where pain persists in the absence of tissue damage; the pain itself becomes the disease (Gatchel, Peng, Peters, Fuchs, & Turk, 2007). Conditions associated with chronic pain (e.g., migraine, fibromyalgia, regional pain syndrome, irritable bowel syndrome) appear to result from sensitization of the nervous system as a result of trauma, inflammation, or illness, resulting in excitation in the absence of stimulus (Bettini & Moore, 2016).

THE BASICS

The dominant cultural model of pain is based on our experience with and language for acute pain, which are treated with rest and pain medications (Loftus, 2011; Semino, 2010; Stewart, 2016). When patients and families cope with chronic pain in the ways they have learned to deal with short-term acute pain, it can trigger a complex suite of physical, psychological, and social factors that cause a down spiral that interferes with both healing and the ability to function. Because adolescence is a period dense with time- and age-dependent requirements and transitions (e.g., rigid school schedules and deadlines, graduation requirements) and marked by significant psychosocial changes (entrance into the workforce, increased autonomy, identity formation, changes in family, peer and romantic relationships), experiencing chronic pain can have significant long-term consequences, even if the pain is later resolved (Zernikow & Hechler, 2008).article continues after advertisement

Vicious and Virtuous Cycles

Pain, depression, anxiety, and isolation tend to run together. Table 1 lists some of the physical, psychological, and social factors that contribute to this downward spiral and result from chronic pain (Gatchel et al., 2007).

For example, chronic pain and depression are mutually reinforcing (Rudy, Kerns, & Turk, 1988): chronic pain can cause depression (Atkinson, Slater, Patterson, Grant, & Garfin, 1991), and depression can cause chronic pain (Magni, Moreschi, Rigattiluchini, & Merskey, 1994) and worsen people’s cognitive appraisal of its intensity (Benore, D’Auria, Banez, Worley, & Tang, 2015; Huguet et al., 2016). Reinforcing tendencies such as those between pain and depression tend to cascade in either vicious or virtuous cycles. For example, when painkillers and reducing activities fail to reduce chronic pain, patients can feel more anxious and depressed, which can heighten their feelings of isolation and their experience of pain (Gatchel, 2004). Fear of exacerbating pain by engaging in normal activities can interfere with adolescents’ functioning and the pain-rehabilitation process, maintaining and exacerbating the negative cycle (Simons, Kaczynski, Conroy, & Logan, 2012). In addition, adolescents experiencing chronic pain may over-use analgesics or acute treatment medications, reducing their effectiveness and resulting in rebound pain (Gelfand & Goadsby, 2014).

In contrast, virtuous cycles can also exist as patients become more aware of the array of factors that contribute to their experience of chronic pain and gain confidence in their ability to manage their symptoms. Increased functioning and reduced isolation can decrease experienced pain and interfere with the neurogenic pain cycle (Bettini & Moore, 2016) . Vicious and virtuous cycles can work at the family as well as individual level. Lower levels of adolescent depression and parents who encourage adolescent functioning foster family processes that facilitate adolescent functioning and reduce misguided helping (Fales, Essner, Harris, & Palermo, 2014). When adolescent patients and their families have a better understanding of the systemic nature of chronic pain – what we hope these tools will facilitate – a virtuous cycle of treatment is more likely (Jensen, Turner, & Romano, 2001).

What We Know About Acute Pain Can Hurt Us When We Experience Chronic Pain

Shifting the way people think about pain from a dominant cultural model based on acute pain to a more systemic, multicausal model of chronic pain is challenging but important. Causes and treatments of acute pain are typically simple: a broken arm needs to be set and given time to heal. The causes of chronic pain are often diffused and the treatment complex. For example, migraines affect approximately 8% of children and adolescents worldwide (Abu-Arafeh, Razak, Sivaraman, & Graham, 2010). A large representative sample of the US reported over 50% of migraineurs experienced severe impairment at least once within the prior month (Lipton et al., 2007). Despite the prevalence of migraines, their underlying etiology is unclear, their immediate triggers are poorly understood and vary widely from person to person, and no single preventive or acute medication eliminates pain in chronic migraineurs for even a sizable minority of patients. Instead, best practices for pediatric treatment include lifestyle changes (diet, sleep, exercise); increasing functioning and school attendance while reducing stress; psychological counseling, physical therapy, exercise, acupuncture and yoga, in addition to supplements, preventives, and acute medications. Preventives are often introduced slowly in subclinical doses, making it is difficult to connect treatment with changes in pain. Analgesic overuse is common and associated with long-term increases in pain, further complicating treatment (Rothner, 2011).article continues after advertisement

Clearly, understanding the triggers and treatment process for chronic pain conditions like migraines requires a sophisticated understanding of multiple causal and buffering factors. In addition, making cause and effect connections is complicated by lags between triggers and pain onset and between treatments and symptom relief. In addition, many chronic pain conditions vary considerably depending on the constellation of triggering and buffering stimuli experienced at a given time. It is thus critically important that patients understand that the same stimuli (e.g., exercising) may trigger pain during a stressful period but serve as a protective factor when relaxed.

The type of conceptual models used to understand acute pain are not adequate to this task (Robins et al., 2016). Instead, it requires systems thinking, in which people attend to the system as a whole and take into account complex, often reciprocal, causal relationships and patterns or change (Thibodeau, Frantz, & Stroink, 2016). Although people most often use acute pain models to think about chronic pain, there is evidence that patients can reconceptualize the problem in systems terms (Moseley, 2003). For example, participants in one study completed a 19-item Neurophysiology of Pain Test (Example item: “Chronic pain means that an injury hasn’t healed property”; Answer = False) before and after an educational intervention. Before the educational intervention, participants answered just 12% of the questions correctly, suggesting that they were initially relying on what they knew about acute pain (causal agent=tissue injury) to think about chronic pain. After the educational intervention, participants improved significantly, answering 61% of the questions correctly.

Understanding complex systems is hard for all of us. Because teens are still developing the cognitive abilities that allow them to do this, it is even more challenging.  

The consequences of these difference is important in how we treat pain. When people respond to chronic pain the way they would to acute pain, it interferes with school, the transition to work and their ability to maintain friendships. It also makes it harder to treat pain over time.

Two excellent books on parenting children in chronic pain:

  • Conquering Your Child’s Chronic Pain by Zeltzner and Schlank is an excellent introduction to how pain works and techniques for coping with it. I hate that title, but it has helped me tremendously. My son has also read it and found it very useful.
  • Managing Your Child’s Chronic Pain by Palermo and Law is another excellent book. It is more of a workshop approach and is aimed at parents who don’t have access to a pain clinic. They include a lot of how-to techniques on relaxation.

Parenting A Child In Chronic Pain: Essays From The Inside. A collection of my posts on parenting a child with chronic pain and helping them to return to functioning: This includes all the essays below plus others on helping kids return to school, keeping kids organized, general parenting, and the frustration of dealing with people who just don’t get it.

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