Navigating chronic pain is a key part of living with sickle cell disease. For clinicians and caregivers, helping children and adolescents understand their pain is an essential step toward empowering them to manage it effectively. This handout, “Understanding Your Pain,” provides a straightforward way to explain the difference between acute and chronic pain and equips patients with the knowledge and tools to manage chronic pain at home.
Overview of Chronic Pain Mechanisms in SCD
When discussing pain with patients and their families, it’s helpful to provide a more detailed clinical context. The transition from acute to chronic pain in sickle cell disease (SCD) is not just a matter of time; it’s a complex neurobiological process. Understanding this mechanism can help you explain to patients and caregivers why pain changes over time and why the management plan needs to evolve.
Image from: Field, J. J., Ballas, S. K., Campbell, C. M., Crosby, L. E., Dampier, C., Darbari, D. S., … & Zempsky, W. T. (2019). AAAPT diagnostic criteria for acute sickle cell disease pain. The journal of pain, 20(7), 746-759.
The Shift from Acute to Chronic Pain
In sickle cell disease, acute pain episodes are caused by vaso-occlusion (i.e., sickled red blood cells block blood vessels), which can lead to inflammation and tissue injury. A child experiences severe pain crises when these blockages are significant enough to be felt. Over time, with repeated episodes of vaso-occlusion, the body’s pain signaling system changes. This is where peripheral and central sensitization come into play.
- Peripheral Sensitization: Repeated tissue injury and inflammation at the site of the blockages make the local nerves more sensitive. Otherwise stated, nerves send stronger pain signals to the spinal cord, even with less intense triggers.
- Central Sensitization: As these strong pain signals continue to overwhelm the central nervous system (the brain and spinal cord), it becomes increasingly sensitive. This causes the “pain threshold” to decrease, so a person may start to feel more pain from the same level of vaso-occlusion. This can lead to more generalized pain, known as hyperalgesia (an increased response to a painful stimulus) and allodynia (feeling pain from a stimulus that normally is not painful).
Essentially, the body’s pain “volume dial” gets turned up. A patient might have the same number of vaso-occlusion events as a young child, but as an adolescent or adult, they experience more frequent and severe acute pain episodes on top of a background of chronic pain.
The Handout: Your Toolkit for Chronic Pain
This handout, “Understanding Your Pain,” is designed to address a common challenge: a change in the treatment plan as a patient gets older. It reassures patients that a shift toward home management of chronic pain does not mean their pain isn’t real, that their care team doesn’t care, or that they did something wrong. Instead, going home means they are ready to manage their pain, have the tools and support they need, and are becoming more independent.
The handout lists several strategies for managing chronic pain, which can be readily accompanied by the Pain Gate handout for greater depth. This resource empowers patients by framing chronic pain management as a skill, much like learning to ride a bike or play a video game. By encouraging practice, clinicians and caregivers can help patients build confidence and self-efficacy, showing them that it is possible to have a good life while managing their pain at home.