The mechanisms, causes, and potential future treatments for neuropathic pain investigated in PAINSTORM are described in the second episode of PAINCAST. The podcast is available from Monday 10th June 2024 on all major platforms (including Apple Podcasts, Spotify, and Google Podcasts) and features powerful insights from people living with this invisible disability and pain specialists from the multidisciplinary research team.
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Although little known, around eight per cent of the UK population suffer from neuropathic pain from a wide variety of causes. These include diabetes, infections such as HIV and shingles, injury or surgery, Parkinson’s, MS, and also as a side effect of some life-saving drugs used, for example, in cancer treatment. Its impact can often be life changing, as explained by two people who live with chronic neuropathic pain: podcast host, BBC broadcaster and writer Fiona Talkington, and BBC Security Correspondent Frank Gardner.
Their experiences, and those of others living with chronic neuropathic pain, are central to the research. Possible causes, potential future treatments, and approaches to living with neuropathic pain are outlined by pain specialists, a clinical psychologist, and a dancer and dance therapist.
What causes neuropathic pain?
Damage to the sensory nervous system affects the way our bodies deal with impulses from our nerves, causing neuropathic pain. Professor David Bennett, from the University of Oxford, who is leading the research, describes it as being a bit like a short circuit in electrical wiring. Damage to the nerves simultaneously limits sensation (resulting in numbness) and causes pain, often experienced as being similar to electric shocks, pins and needles or stabbing and aching. It can be life changing. It can be a nagging, dull pain disturbing sleep or something so severe that the person experiencing it wants to cry out.
Frank Gardner doesn’t pull any punches in describing the severity of the impact of 20 years living with chronic neuropathic pain. Frank’s neuropathy was caused by spinal injuries received when he was shot six times in a terrorist attack in Saudi Arabia. He says he has episodes when he feels like he is being “battered” by “a baseball bat being taken to my instep” and talks about developing the technique of the “silent scream”. He has found a way of “pushing it (pain) away” by hand cycling, travel and other activities that offer a distraction. He feels that pain is not “a teacher” but just “something I have got to deal with”.
Alternatives to painkillers?
None of the recommended painkillers work for Frank or for many others living with chronic neuropathic pain. Its intensity is illustrated in a powerful poem from Fiona herself when she asks for someone to “make it stop”. However, Fiona goes on to describe her experience working with dancer, teacher, and dance movement therapist Anusha Subramanyam. Subramanyam helped her to explore her relationship with her pain through the medium of Indian dance.
Living “alongside” pain
The podcast also explores benefits that can be delivered by Cognitive Behavioural Therapies (CBT) in an interview with Clinical Psychologist, Dr Whitney Scott, from King’s College London and the INPUT Pain Unit. Her work focuses on helping people to adapt to the challenges that pain presents in their lives, rather than reducing the pain itself - “…navigating life alongside pain.” Importantly she helps patients to flexibly connect with areas of life they care about in the presence of pain and aims to introduce “hope”, focusing on how they can adapt.
Professor Andrew Rice, from Imperial College London, speaks about helping patients to manage their own pain, rather than leaving this to healthcare professionals. He stresses that as pain is a hidden disability, so it is often not recognised by work colleagues or even by family and friends. This is exacerbated by the episodic nature of neuropathic pain, which means that it is even less understood.
One of the major objectives of the PAINSTORM project is therefore to raise awareness of neuropathic pain. Patient Partners are central to all aspects of the research and use creative writing and art to communicate and express their pain. The podcast ends with a further dance encounter between Fiona and Anusha Subramanya, Fiona using the dance and music not to distract her from her pain but to deepen her relationship with it, feeling “my breath moving through my whole body.”
For further information and enquiries about potential interviews and media appearances, please contact PAINSTORM project manager at painstorm@ndcn.ox.ac.uk or for media enquiries, please contact PAINSTORM comms at jo@commsbiz.com or call +44 (0) 7306 391875.
Podcast cover image credit: The pain of it all, emotional cancer journey, artwork. Michele Angelo Petrone. Attribution 4.0 International (CC BY 4.0). Source: Wellcome Collection.
