As the pain continues the young person can quickly develop a pain-associated disability (Fig. 1) where there is deterioration in many aspects of quality of life.
Sleep disturbances among adolescents affect many areas of their lives, including school attendance and performance, emotional state, and relationships with family members and friends. Initially, constant pain is the main factor in an adolescent's poor sleep pattern. Positioning in the bed is difficult and, with no distractions, the pain intensity increases. Over time the young person also has reduced physical activity in the day and a marked lowering of mood. These two elements are key in further deterioration of the sleep routine. The time getting to sleep gets later and there are frequent episodes of wakefulness throughout the night. It is not uncommon for a young person to fall asleep at 3 a.m. and to wake each hour following this. Catnapping in the day compounds this problem.
As pain continues the amount of physical activity that a young person can engage in reduces substantially. Previously fit, often competitive,
adolescents stop all sports and recreational activities, eventually becoming housebound.
The majority of young people with ongoing pain will develop a low mood. A small but important minority of these will go on to develop a secondary depression. This is not only due to the ongoing pain but also the deterioration in quality-of-life with an increasing dependence. Parents may report introversion, swinging moods, or outbursts of uncontrollable anger. Motivation for rehabilitation can reduce and communication difficult. Rarely, there is a "la belle indifference" where the young person is outwardly cheerful and unconcerned, despite a severe pain condition.
Pain has considerable effect on concentration and memory. Adolescents find it difficult to retain facts and to remain attentive in lessons. Sitting for long periods increases discomfort and mobilizing around large secondary schools is often impossible. Multiple hospital appointments further reduce school attendance. In many cases the young person stops going to school. Home tuition may be instigated; this too depends on the young person's ability to participate.
Adolescence is a time of fierce independence. Chronic pain conditions markedly curtail this freedom as the young person relies totally on carers for tasks that were previously done with ease. Mobility, eating, toileting, and dressing may all need external help. This has an enormous impact on the emotional well-being of the young person.
As education and independence suffers so the peer relationships and social integration falls away. Previously popular young people become introverted and unwilling to communicate with friends and colleagues. Friendship groups can be challenging at this age for those who are well and at school full time—it is so much harder if you have a condition that is difficult to label and explain. Friends often stop making contact and move on.
Chronic pain can cause enormous upheaval even in the most functional families. Initially there are the hospital visits and uncertainty about diagnosis. Parents lose time off work and it is not unusual for one parent to stop working completely. There have been a number of studies looking at parental stress and anxiety and affect on family function, perceived disability, and rehabilitation that show conclusively the importance of addressing these areas (70). Holidays, activities, socializing, and plans are all affected by adolescent pain. Siblings may feel neglected and anxious. Other relatives may become distant or overbearing.
There is a common misconception that chronic pain is only found in families that are, in some ways, dysfunctional. Most family units are, premorbidly, functioning normally. Ongoing pain has catastrophic effects on these families that can lead to overwhelming anxiety and breakdown of structure.
Cruelly chronic pain often affects adolescents who are very able and highly functioning. Future goals become seemingly unattainable and motivation quickly disappears.
The pain increases beyond that expected from the original insult and the young person becomes gradually more disabled. Pain in adolescents and children creates understandable anxiety in families and medical arenas. This concern leads to frequent medical visits, investigations, and therapies.
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