David Rose (pictured)
Chair of Trustees, The Limbless Association
More needs to be done to understand phantom limb pain and the management strategies that help people cope with it, says David Rose, Chair of Trustees at The Limbless Association.
What is phantom limb pain?
It’s a phenomenon where the nervous system refuses to accept the loss of a limb, resulting in a nervous response being sent to a part of the body that no longer exists. Symptoms can include mild pins and needles to feelings of extreme cold. At its most injurious, it causes high levels of severe neuropathic pain which, tragically, has led to suicide in some cases.
Where is the pain felt?
I’ve experienced phantom limb pain every day for 41 years since the loss of my lower right leg in a motorcycle accident. I’ve had to learn to adjust and cope with it — although, thankfully, my pain is relatively low level. Today, I’m experiencing pain in the back of my calf and ankle, and a tingling sensation around my toes. I’m feeling this in my residual right leg, exactly as I would do in my fully functioning left leg.
How many people experience phantom limb pain?
It’s difficult to put a number on it because limb loss affects different people in different ways. I can say that, around the world, there are tens of thousands of amputee veterans of recent conflicts who are living with severe forms of it. Also, most patients with limb loss will experience a period of phantom nerve pain to a greater or lesser extent. Some of us will have it forever. Others find that after 10, 15 or 20 years, it simply fades away.
Why has there been a lack of information and support for managing phantom limb pain?
It’s a subject that hasn’t received anything like the attention it should have done. I think that’s because medical science has no ‘cure-all’ for it. There are drug treatments, but there’s no intervention that can simply take it away once symptoms present themselves.
I’ve experienced phantom limb pain every day for 41 years since the loss of my lower right leg in a motorcycle accident.
There’s been more of a focus on development of treatments for conditions and diseases that will achieve measurable benefits for patients. Unfortunately, I think phantom limb pain falls outside of that medical remit.
Are pain management strategies available to patients?
Yes. These are many and varied and include anti-depressants and high-strength pain medications. Lower level, non-steroidal anti-inflammatories are available too, but generally these don’t provide much relief. There are also numerous practical interventions, such as applying ice packs to the end of a residual limb.
Personally, I find a warm bath can be beneficial, while others find it helpful to keep water flowing on the end of their residual limb when they’re having a shower. Some people use aromatherapy, acupuncture and TENS machines (transcutaneous electrical nerve stimulation). What works best will differ from patient to patient, however, because of the unique nature of this condition.
Is it time to review phantom limb pain research and evaluate treatments and coping strategies?
Yes. I often hear of research being undertaken in various areas of phantom limb pain, but I don’t tend to see outcomes of trials and tests, or the reporting of practical results with real patients.
A patient-centred approach is necessary to better understand and cope with this condition. People with personal experience of limb loss need to engage with scientists at the beginning of the research process. We know this approach works because we have some incredible prosthetic science and technology available to us now – such as the processor in my prosthetic leg that stops me stumbling and falling – which was developed by researchers engaging with amputees at an early stage. Marvellous, incredible outcomes have been achieved. The same thing should be happening in the area of pain management.