Book Review

Complex Regional Pain Syndrome (CRPS) explained:
for teenagers, by teenagers

Lauder GR, Massey R (2010). Bloomington, IN: Xlibris Corp, 100 pp. ISBN 978-1-4535-8997-7 (eBook $9.99 USD), ISBN 978-1-4535-8995-3 (Trade Paperback $15.99 USD), ISBN 978-1-4535-8996-0 (Hardcover $24.99 USD).

Reviewed by Caitlin Conroy and Deirdre Logan

printable version (PDF)

Complex regional pain syndrome (CRPS) in children most frequently affects adolescent females and can have a profound impact on the child and family system. Adolescents with CRPS often report feeling isolated from their peers and school systems, missing out on sports and other activities, and feeling as though no one understands their condition. Affected adolescents struggle with their own understanding of the condition including its possible causes and appropriate treatments. The relative rarity of pediatric CRPS often leads to prolonged searching for an accurate diagnosis and treatment plan, frequently resulting in frustration, confusion, and feelings of being disbelieved for adolescents and their families. Once CRPS is identified, the best treatment is often intensive functional pain rehabilitation. While quite successful, this treatment approach can pose further challenges for adolescents who must assume responsibility for their pain management and learn to work through the pain before experiencing improvement. The creation of a short, yet comprehensive, overview of the condition, its impact on the life of the adolescent and typical course of treatment is therefore a much needed resource for this specific population.

Complex Regional Pain Syndrome (CRPS) explained: for teenagers, by teenagers is a book designed to provide information about the condition in a clear and concise manner, specifically tailored to the adolescent population. The text was written with input from a panel of adolescents, some of whom had been treated for CRPS. The authors state that the intention of the publication is to provide teenagers who have been diagnosed with CRPS with the knowledge they need to take an active role in their health care and treatment planning. Through the use of a cartoon case example, Harold, the alpha lion, the book describes the condition of CRPS, its effects on the body, the various members of a typical pediatric pain treatment team and a comprehensive description of the rehabilitation approach to treatment.

CRPS explained has many strengths in its conception and execution. Overall, the book does an excellent job of combining many areas of education that are typically difficult to find in one place or from a reputable source. Given the volume of information that can be accessed through the internet, it is helpful to point patients to child-specific, well-researched resources for education about CRPS. Additionally, the book is written in clear and simple language, not medical jargon, and is appropriate for a range of ages and reading levels, allowing children to access the information. While the use of a cartoon lion as a case example may be somewhat immature for an older adolescent and a female character might have been a more appropriate choice given the overwhelming female-to-male preponderance of CRPS in pediatrics, the use of metaphor and a character that teens can relate to is laudable.

The book begins in the way that a treatment plan might, by providing education about the biological process of pain and pain signals, an overview of the nervous system, and the differences between acute and chronic pain on the physiological level. This allows the child to understand the rationale for the treatment approach and the differences between acute and chronic pain management. The subsequent chapters then discuss the symptom picture of CRPS and the impact that CRPS can have on the teen. The book includes a view of the cycle of pain that leads to a decrease in functioning and an increase in social isolation and mood disruption, emphasizing the requirement for re-engagement in typical activities and taking control of the pain and the ways in which one is affected by it.

A significant portion of the book describes the various treatment providers that may be involved in some patients’ CRPS care as well as the different treatments that these team members provide. In this section, the role of psychology is described in brief but does not receive the elaboration in further sections that medication and physical therapy approaches receive. In clinical settings, the recommendation for psychological services as a component of pain treatment often provokes resistance from the adolescent population. The authors may have missed a valuable opportunity to go into further detail about the important role of psychological techniques in a comprehensive pain treatment plan. Language framing psychological, or brain-based strategies such as relaxation, biofeedback training, and cognitive restructuring as ways to reduce the suffering associated with pain would be useful in the context of this type of book. Importantly, introducing these techniques as integral in the treatment and management of CRPS could go a long way in reducing resistance to these approaches and helping adolescents to understand that engaging in psychological treatment does not indicate that their problem is psychological in origin (i.e. that the pain is all in their heads). The role of occupational therapy techniques also lacks detailed description. More detail about desensitization techniques to reduce allodynia and strategies to regain abilities to perform activities of daily living also would have enhanced the book.

The authors chose to describe the use and potential side effects of medication management for CRPS pain in greater detail, which is of use to many teenagers and families who have questions about the use of medications. However, the recommendations about medication usage and detailed descriptions of specific neuropathic pain medications seem overly generalized and imply that medications are universally indicated rather than a very individualized component of pain treatment best left to the discretion of the treating physician and based on the specifics of each individual adolescent’s case.

Another aspect of the CRPS pain experience that receives little attention in the book is the role of the adolescent’s parents and other family members. In recent years there has been a burgeoning research literature supporting the view that parental responses to pain and other aspects of the parent-child relationship, as well as broader family interactions, are key components of the biopsychosocial pain experience and can significantly influence the child’s functional outcomes. The book would have been strengthened by greater attention to the bidirectional influences of pain and family relationships. Detailed attention to how pain impacts and is impacted by other system-level influences in the teen’s life, such as the school context, was also lacking.

The book concludes with a realistic, yet optimistic, impression of the journey through CRPS treatment, emphasizing that the child may still have pain but will have greatly improved her functioning and will have developed valuable skills. Prior to providing excellent resources for teens seeking treatment, the book concludes with a final brief chapter entitled “Can CRPS Come Back?” addressing the possibility that CRPS can recur. We found the statements about recurrence to be overly emphatic (e.g. “Every year, two out of one hundred patients who previously had CRPS will experience a recurrence…”) given the current state of knowledge about recurrence in pediatric populations. Additionally, it would have been preferable to place this information earlier so that the book’s final message could have had a more hopeful tone.

CRPS explained provides teens and families with a much needed resource about the diagnosis, components of a comprehensive multidisciplinary pain treatment team, and treatment approaches for CRPS. The book is user friendly for both teens diagnosed with CRPS as well as important others in a teenager’s life. Teens with CRPS often struggle to find ways to explain the pain experience to others in their lives. As clinicians working with teenagers diagnosed with CRPS, we would recommend this book to patients looking for a concise but thorough source of information to solidify their own understanding of the condition and its treatment and to provide to friends or family members.

Cite as: Conroy C, Logan D. Book review: Complex Regional Pain Syndrome (CRPS) explained: for teenagers, by teenagers. Pediatric Pain Letter 2011;13:17-19. www.childpain.org/ppl