Pain is a universal experience, yet it remains one of the most complex and misunderstood aspects of human health. From the sharp sting of a paper cut to the deep, persistent ache of chronic conditions, pain can take countless forms, each affecting our bodies and minds in unique ways. For some, pain is temporary, a fleeting signal that something is wrong. For others, it becomes a constant companion, shaping their daily lives and limiting their ability to engage fully with the world.

Despite its prevalence, pain is often overlooked or poorly understood, leaving many individuals to navigate its challenges alone. As our understanding of pain evolves, so does our ability to address it—not just as a symptom but as a multidimensional experience that affects physical, emotional, and social well-being.

One area of pain that remains particularly enigmatic is phantom limb pain, a condition experienced by many people following an amputation. This type of pain defies logic: how can a person feel pain in a limb that no longer exists? To shed light on this phenomenon, we are speaking with Dr. Katleho Limakatso, a leading expert in this field. Dr. Limakatso holds a Doctorate in Anaesthesia from the University of Cape Town and currently serves as an Evidence Generation Officer for the New South Wales Agency for Clinical Innovation. His research delves into the prevalence, risk factors, and treatment recommendations for phantom limb pain, aiming to bridge critical gaps in our understanding and improve the lives of those affected.

Through this thought-provoking interview, we aim to deepen our understanding of pain in general, explore the unique challenges faced by people with amputations, and uncover practical insights that can help individuals and caregivers navigate the complexities of pain. Let’s delve into this essential topic and learn from someone at the forefront of pain research.

Questions for Dr Limakatso

1. What inspired you to pursue research on phantom limb pain, and why do you think it has been underexplored in the literature?

My interest in phantom limb pain stems from a desire to address some of the unhelpful beliefs and misconceptions surrounding this condition, such as the idea that it's purely psychological or untreatable. Additionally, I am deeply passionate about alleviating the suffering of individuals experiencing phantom limb pain. Seeing how this condition affects quality of life motivate me to contribute to better solutions. Lastly, I’ve always been curious about the physiological mechanisms underlying this mysterious phenomenon—how the brain and nervous system can produce such vivid pain in the absence of a physical limb was fascinating.

In recent years, there has been significant growth in research on phantom limb pain, particularly in the past decade. Much of this work has focused on uncovering the mechanisms underlying phantom limb pain and testing innovative treatments in small-scale clinical trials. While the results of these studies are promising, there is still much to be done. Continued research is crucial to not only deepen our understanding of this condition but also to refine and enhance existing treatments to ensure they are as effective as possible for those who need them.

2. What role do you think psychological and social factors play in managing phantom limb pain, beyond the physical symptoms?

Psychological and social factors play a significant role in managing phantom limb pain, as they interact closely with the physical experience of pain. On a psychological level, factors such as anxiety, depression, or post-traumatic stress can exacerbate the perception of pain and reduce an individual's ability to cope. For example, catastrophizing—the tendency to focus on and magnify pain—has been shown to worsen pain intensity and hinder recovery. Addressing these psychological aspects through interventions such as cognitive-behavioural therapy (CBT) can help patients reframe their pain experience and improve their overall quality of life.

Social factors are equally critical, as they influence the emotional support and coping resources available to patients. Isolation or a lack of understanding from friends, family, or healthcare providers can exacerbate feelings of distress and hopelessness, whereas strong social support systems have been shown to foster resilience and improve pain outcomes.

Ultimately, managing phantom limb pain requires a holistic approach that integrates biological, psychological, and social dimensions.

3. Based on your findings, what do you see as the most effective or promising treatments for phantom limb pain?

Based on the findings from my research paper, Treatment Recommendations for Phantom Limb Pain in People with Amputations: An Expert Consensus Delphi Study, some of the most effective and widely recommended treatments include mirror therapy and graded motor imagery. Mirror therapy, in particular, has been shown to reduce pain intensity by addressing maladaptive cortical reorganisation and creating an illusion of the missing limb. Graded motor imagery extends this concept by providing a step-by-step approach to retraining the brain, starting with left/right limb judgements and progressing to imagined movement tasks, and progressing phantom limb movements using a mirror. These methods are grounded in a strong understanding of neuroplasticity and have demonstrated efficacy in reducing phantom limb pain for many patients.

4. What common misconceptions about phantom limb pain that you feel the public should be more aware of?

One of the most pervasive myths is the idea that phantom limb pain is "all in your head." While phantom limb pain does have psychological components, it is a real phenomenon with physical origins. It often involves maladaptive changes in neural pathways and brain representation following amputation. another misconception is that if phantom limb pain doesn’t occur immediately after an amputation, it won’t develop at all. While phantom limb pain typically manifests soon after surgery, it can sometimes emerge months or even years later, making it important for individuals and clinicians to remain vigilant about its potential onset. Many people also believe that phantom limb pain is rare or only affects an unlucky few, but the reality is quite different—approximately 9 out of 10 individuals with amputations experience phantom limb pain at some point in their lifetime. Another myth is that phantom limb pain will naturally resolve over time. While some people do experience a reduction in symptoms, many continue to deal with chronic pain for years, making early and sustained interventions critical.

Finally, there’s the misconception that phantom limb pain is untreatable. In fact, there are a variety of promising treatments available, including exercise-based therapies, neuromodulation techniques, and even surgical interventions. These approaches, often combined in a multidisciplinary framework, can significantly reduce phantom limb pain.

 5. What should individuals know about communicating their pain effectively to healthcare providers?

Individuals should know that effectively communicating their pain to healthcare providers involves being as specific and detailed as possible. They should describe the pain’s location, intensity, duration, and triggers, as well as any patterns or changes over time. Sharing how the pain impacts daily activities and emotional well-being is also important. Using pain scales or diaries can help convey the experience more clearly. Open and honest communication fosters a better understanding and allows the treating clinician to tailor the treatment program to the individual’s needs.

6. What advice would you give to someone caring for a loved one experiencing chronic pain?

For someone caring for a loved one with chronic pain, it is important to listen with empathy, validate their experiences, and avoid minimising their pain. Educate yourself about their condition to better understand what they are going through. Encourage open communication but also respect their boundaries. Help them adhere to treatment plans and promote healthy habits like physical activity and stress management. Most importantly, practice patience and take care of your own well-being to maintain the emotional resilience needed to provide effective support.

7. If you could summarise the key takeaway from your research for patients and clinicians, what would it be?

The key takeaway from my research is that addressing phantom limb pain requires a holistic, individualised approach. PLP is highly prevalent, affecting the majority of individuals with amputations, and is influenced by biopsychosocial factors. For patients, understanding that phantom limb pain is manageable and not “all in your head” is crucial—there are evidence-based treatments available, ranging from mirror therapy to surgical options such as targeted muscle reinnervation.

For clinicians, prioritising patient-reported care needs is essential. As highlighted in my study, “Care Priorities for Individuals with Lower Extremity Amputations: A Patient Delphi Study”, care for individuals undergoing amputations should begin before surgery. Specifically, my research emphasises the importance of improving patient access to education and planning support prior to amputation, providing mental health and psychological support early after amputation, and optimising post-amputation rehabilitation programs to enable individuals with amputations to participate in meaningful life roles that provide them with purpose, dignity, and respect.