Lesley King | Pain as a silent epidemic

Pain may be considered a silent epidemic. One in five people worldwide suffers from chronic pain. Pain is subjective and all-encompassing, only he who feels it truly knows it. To the observer, doubt often creeps in because pain is intangible: we cannot see it, touch it or measure it. As a result, its very existence is sometimes questioned.

A familiar example is that of women who experience severe dysmenorrhea (painful menstrual cramps) monthly, only to face suspicion over their frequent absence from work or school. When pain is recurrent or chronic, this persistent doubt can harden into stigma. Over time, such dismissal might lead to inadequate treatment and erode trust between patients and healthcare providers.

PAIN AND SICKLE CELL DISEASE

Bone pain is the commonest complication, experienced by over 90 per cent of people with sickle-cell disease (SCD), a lifelong inherited blood disorder. Pain can begin as early as four months of age and persist throughout a person’s life. Pain crises typically start as acute, sporadic episodes, each lasting anywhere from several days to two weeks.

These episodes are often unpredictable and might occur without an obvious trigger. Known precipitants include extremes of weather, especially cold and rainy conditions, along with dehydration, stressors like exams or grief, and infection. The severity of pain ranges from mild discomfort to intense, debilitating agony. As patients age, crises often become more frequent and severe.

Repeated episodes of acute pain can lead to chronic daily pain from permanent damage to nerve endings and changes in how the brain processes pain signals. Chronic pain may also arise from other complications of SCD, such as leg ulcers or damage to the hip joints. Together, recurrent acute pain and chronic pain impose a heavy socio-economic burden. Many patients miss significant time from school or work, experience reduced educational attainment, and struggle to maintain steady employment. Unsurprisingly, these challenges are often accompanied by psychological consequences, including depression and anxiety.

Sickle-cell pain is frequently described as an iceberg. The visible tip represents pain crises that lead patients to seek medical attention at clinics or hospitals. Beneath the surface, however, lies a much larger burden, an estimated 90 per cent of pain episodes patients manage at home, often in silence. Unfortunately, it is the visible portion of the iceberg that dominates public and clinical attention. These encounters might generate “noise” and negative perceptions, shaped by patients’ desperation for relief and clinicians’ responses to it, while the vast, submerged burden remains overlooked.

Pain in SCD is not merely a symptom; it signals acute sickling and can trigger other life-threatening complications. People living with SCD (PLWSCD) who experience frequent, severe crises face a shorter lifespan. By focusing on the tip only, we risk under-managing the root of the problem.

IMPACT OF CLIMATE CHANGE

Jamaica’s recent cold fronts are more than just unusual weather patterns, along with Hurricane Melissa; they are reminders of the growing impacts of climate change and a preview of what might lie ahead.

For PLWSCD, cooler temperatures and high wind speeds lead to increase pain crises bringing real suffering, turning climatic shifts into painful daily realities. At the same time, with global warming, higher temperatures also increase the risk of pain due to dehydration.

Managing SCD pain is complex. There is no simple solution, and progress demands that we address the entire iceberg, not just the tip.

Opioids remain the strongest class of painkillers available. Common medications such as paracetamol and ibuprofen are useful for mild to moderate pain, but possess only a fraction of the potency needed for severe acute or chronic pain. For many PLWSCD, opioids are therefore necessary.

However, they are far from a perfect solution. The euphoria associated with opioid use can lead to misuse and addiction, a phenomenon with deep historical roots and devastating modern consequences, as seen in the global opioid epidemic. Legitimate concerns about side-effects, such as constipation, drowsiness, and respiratory depression have understandably made clinicians cautious. Yet, this caution has had unintended consequences, often disadvantaging PLWSCD whose pain genuinely requires opioid treatment. Several studies demonstrate that, in contrast to trends seen during the global opioid epidemic, opioid-related deaths among PLWSCD have not increased.

IMPROVE MANAGEMENT

We must improve the management of acute pain episodes through ongoing clinician training, responsible opioid prescribing, and strong clinician-patient partnerships. Investment in research is essential to develop safer, more effective pain therapies. At the same time, greater emphasis must be placed on routine, preventive care.

Disease-modifying therapy, such as hydroxyurea, has been shown to significantly reduce pain crises, decrease complications, and improve quality of life. Although available in Jamaica, it remains underutilised. Preventive care must also emphasise patient education and support to help individuals identify and avoid known pain triggers, including physical and emotional stress.

Multidisciplinary teams including pain specialists, physiotherapists, psychologists, and social workers, are important in addressing not only physical pain, but its emotional and social consequences. We must also foster an empathetic community, one that understands SCD and is willing to provide meaningful support.

The Sickle Cell Technical Working Group, a Ministry of Health and Wellness–mandated body that includes partners. such as Sickle Cell Unit and patient advocacy groups, is actively working to strengthen sickle cell care in Jamaica, with pain management as a central focus. In the context of climate change and its evolving health impacts, the urgency of this work cannot be overstated. The quality of life of PLWSCD, and our collective sense of compassion, demands nothing less.

Dr Lesley King is the head of clinical services, Caribbean Institute for Health Research, UWI. Send feedback to lesleygaye.king@uwi.edu and columns@gleanerjm.com