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PAINCAST - a creative podcast from the PAINSTORM clinical research team and its patient partners exploring neuropathic pain and the impact of living with it. Presented and co-produced by BBC broadcaster and writer Fiona Talkington who lives with neuropathic pain.
Artwork: "The Pain of it All”, Michele Angelo Petrone, Wellcome Foundation
Hello and welcome to Pain Cast, where we untangle, ponder over, reflect on the mysteries and challenges of living with chronic neuropathic pain. This is the official podcast of the Pain Storm Research Project that's headed up by clinicians, researchers, some of the most experienced and respected people in this field globally, and they're hoping to find new ways of predicting and treating neuropathic pain and so importantly, raising awareness of it, too. I'm Fiona Taunton, broadcaster, writer, researcher and living with neuropathic pain since treatment for breast cancer in 2008.
And I'm Mark Smalley.
So just a reminder if you're new to pain cast neuropathic pain is.
At the end of the day, the nervous system really works on the principle of electrical signals. And you could think of nerves a bit like wires, and that wiring has gone wrong after an injury, and that's leading to miscommunication, a lack of signals when we would normally have them, and also excess signals which particular are important for the generation of of neuropathic pain. And that actually does lead to something of a paradox because you lose that connectivity. But at the same time the sensory nerves become hyper excitable. They start generating electrical activity when they shouldn't. And that, to an extent, is at the heart of much of neuropathic pain. Somewhere around 50% of people with diabetes will develop a peripheral neuropathy. And if those patients that develop a peripheral neuropathy, 30 to 50% will develop troubling neuropathic pain. So this is a huge issue at population level. And you know, within the within the UK, you know, we've got rates of 78% of people with with diabetes. So so it's it's a common problem that there's definitely not the only cause very commonly unfortunately patients that have spinal cord injury get terrible neuropathic pain. You can get infections that can cause a peripheral optic. So one example is people may have heard of shingles which is a viral infection that usually affects particular. You will get a rash in a particular region of skin. But actually the sensory nerves also damage. And that is an important cause of neuropathic pain in the community as well. There are other infections. So, we know that, having HIV can be associated with neuropathy, probably for quite complicated reasons, maybe not just the virus itself, but also some of the treatments that we use, for HIV can cause neuropathy as well. And many drugs. Unfortunately, one of the side effects of a number of drugs is causing peripheral neuropathy. There are important toxins that can cause peripheral apathy. Let's be honest. Another one that's very common in the population is alcohol. So if you were to drink, in excess for for a period of time, that also increases your risk of peripheral neuropathy. And that's David Bennett, professor of neurology and neurobiology at Oxford University and head of the Pain Storm Research Project. And in fact, if you want to know what pain storm stands for, it's quite an acronym partnership for Assessment and Investigation of Neuropathic Pain Studies Tracking Outcomes, risks, and mechanisms.
Thanks, Mark.
And finally, what we've been up to of late.
Well, one of the things I did was I visited my old hospital recently. That's where I underwent treatment for cancer, surgery, chemotherapy, radiotherapy, etc.. Cancer treatment, affects people in so many different ways, and many of the side effects are long term. And you might find yourself with a bit of a loyalty card to lots of different departments, one of them being pain management, where people like me with neuropathic pain, which has come about for many reasons, as we had a rubbing shoulders with people living with lots of different types of chronic pain.
Now, Fiona, I know you're dying to share it, but could you hold back for just a moment on the famous pain scale, when you have to describe the pain you're experiencing on a scale of from 1 to 10?
Oh, yeah. Yeah, actually, hold on, I wasn't going to do that just yet. I was thinking more about the term pain management, and I'll talk to someone in just a moment about that. After all, whose pain is it, anyway? And I'll tell you about my visit to the dancer Anisha Subramaniam. Because one thing that's really important to me is to develop my relationship with my pain, with my body.
And now tap forward, back, tap and back to and back. Tap that tap and take your foot back. Yeah. Great. I felt so fun.
I just feel so. Wonderful. It just I'm noticing that although I'm a bit out of breath, I can feel my breath actually moving through my whole body. I love that moment when we were playing peekaboo.
With.
The feet, because that sense of fun and laughter.
It was great being there in Anushka's room with you, Fiona, and just watching the two of you find a way through to to dancing, your experience of pain, as it were. And we'll hear more of you both later in this edition. And meanwhile, I've been to visit the BBC's security correspondent, Frank Gardner, who lives with neuropathic pain as a result. Well, unfortunately, of having been shot six times in Saudi Arabia by Al-Qaeda.
So just now, I'm glad to say you didn't notice it, but I was wincing because once again, I was getting the baseball bat taken to my instep. There isn't a baseball bat, but it felt like it felt like I was being absolutely battered on my instep and for about 3 or 4 seconds. Very painful, but I just tense my muscles to try and distract from it. And I guess it worked because you didn't notice it.
I didn't.
Good.
Frank Gardner and I also went to Guy's Hospital in London to meet another member of the Pain Storm research team, Whitney Scott. She works in the vital area of the psychosocial effects of living with pain, which can so often be more difficult and less understood than the pain itself. And I asked her how she can get people to express what's really going on for them.
The treatment that I deliver. Then that sort of a form of cognitive behavioural therapy, that helps people to manage the impact of pain on their lives. This treatment approach doesn't focus on reducing the pain or controlling pain, but rather helping people to adapt to the very real challenges that pain brings, and then finding new ways or different ways of navigating life alongside pain so that it can be fuller and richer and more satisfying in the presence of these really challenging experiences that come with pain. So we shift hope on to a different outcome, rather than focusing on pain control or pain relief as the main priority.
It's actually that word hope, Mark. That's the crucial one for me. And as Whitney said, rekindling a belief that someone really can make a difference to you. But back now to that term pain management, among other things. Professor Andrew Rice is professor of pain research at Imperial College London and honorary consultant of pain medicine at the Chelsea and Westminster Hospital. And I came straight out and I asked him, whose pain is it to manage anyway?
You've just raised a really interesting question because whose management is it? I think that came from the professionals. Basically we were managing it, but actually concepts are very, very much changing now that what we can do is assist the patients in managing their own pain. One of the best selling self-help books in the area, it's written by a colleague of mine, Professor Michael Nicholas from Sydney. I think it's in its ninth edition now called Managing Your Pain. So that concept is turning around now and not before time, so we can give the advice and the set, the scene. But at the end of the day, it's the patient's pain.
Professor Andrew Rice. The book he mentioned is by Doctor Michael Nicholas called Manage Your Pain Practical and Positive Ways of Adapting to Chronic Pain. First published in 2003. And the tone of this book is really understanding and supportive. And although it was written in the spirit of how things were 20 years ago, there's a lot that you can bring to your own particular circumstances. But to bear in mind that it's not specifically about neuropathic pain. And if you're anything like me, you might find yourself saying, but it's not like that for me.
And are there other good pain management programs or books that you've come across that you find helpful for you to manage your own condition? Yeah.
Yeah. The really, really good thing, Mark, is that there are now lots of online support organisations and programs. There's flip in pain, for example, is pain concern living well with pain? There's Pete Moores Pain Toolkit, and quite recently Doctor Deepak Ruffin runs the pain free mindset. Again, not focusing on neuropathic pain specifically, but with a real strength and helping patients finding wider means of support. We will put some of the links and titles on the Pain Storm website. And there's more from Andrew later on. I'm Mike Smalley and I'm Fiona talking, and you're listening to Pain Cost, the official podcast of the Pain Storm International research project into neuropathic pain.
Please do contact us via the Pain Storm website, where you'll also find details of all the research and the background to the project, which will make a huge difference to people living as you do Fiona with neuropathic pain.
And there you'll also find biographies of all the researchers, people like Whitney Scott, Andrew Rice, David Bennett and many more. And details of my other patient partners in pain storm her passionate about working with a magical world to open up communication and expression of neuropathic pain. I asked some of the researchers quite recently what it's felt like over the last year as Pain Storm has grown and developed, and I think the most frequent comment has been how rewarding it's been for people to be sharing ideas among the many different disciplines, sharing this common goal, and how that drives the feeling that pain storm is working on a very important unmet clinical need. And I think markets already creating partnerships and connections which are going to live on for a very long time. Let's go back now to your conversation with Frank Gardner.
Yes. His life was changed 20 years ago, in 2004, in Saudi Arabia, when unfortunately, he was shot six times in a terrorist attack. I met up with him at the BBC and asked him about his experience of living with neuropathic pain.
The bullets did quite a lot of damage to my spinal nerves, so I get chronic, persistent neuropathic pain, in the legs below the level of injury, mostly down the left leg. But I mean, it can be really agonising at times. I don't think there's a single day that passes where I don't have low level pain, kind of ache. But what I often get is the sensation of somebody taking a mallet or a hammer to parts of my leg, often to the knee, the inside of the knee, the instep, the shin. It's it only lasts about 3 or 4 seconds, but it's cripplingly painful. And I have had to develop what I call the silent scream, where, because I don't want to cry out. It upsets my, my daughters, and my other half. So I just basically just try and breathe through it, which is not easy. One of the things, one way to push it away, funnily enough, is physical activity. Like, cycling. I have a hand bike, so that fits onto the end of my wheelchair and the exertion and concentration needed to navigate over rough ground or potholes or traffic. Somehow that pushes the pain away. And I wish that there was a non-medical or non pharmaceutical way of doing that. No. Okay. Look, encouraged by others, I've tried, CBD oil, I've tried massage, I've tried, physiotherapy. None of it works. The pain is there. I will have it for the rest of my life. I accept that, and I and I don't want to be on some course of really strong, you know, painkiller, which is going to mess with, with my brain.
I think some describe pain as being a hard taskmaster. That can it be a teacher as well?
Not in my case, no. If it is, it can clear off. No, I don't think I've learned anything from it. I mean, it's just something I have to cope with. I mean, it's it's, you know, it's an affliction. Like some people are going to have to cope with deafness or, or a stammer or something like that. It's just something I've got to deal with. So when I, when I left Chelsea in Westminster Hospital as an inpatient, back in 2005, I had to pass through this portal of something called the Chronic Pain Department, which to the uninitiated, sounds like a sort of I don't know, it sounds pretty kind of grim, really. And they were very helpful, and they sent me away with a cocktail of drugs because I had at the time I had, they were worried I didn't have enough nutrition to sustain myself. So I had a lot of food supplement stuff. But amongst the painkillers they gave me, I don't know whether I should be mentioned this because I'm hardly going to get sued by Big Pharma, but, they gave me, a certain, a certain painkiller which shall remain nameless and, a few weeks. And I was told to take this every day. A few weeks later, I was in the bathroom, stripped down to the waist, and my daughter, who was probably about eight at the time, said, daddy, you're growing boobies. I looked down, I thought, wow, that's it, I took it, I'm off this. But, and I don't. I've tried various painkillers. None of them work. And also the idea that, you know, it's going to mess with my hormones or whatever it is. I don't fancy that.
Has it been hard? Charting a way through the pain is a daily reminder of those events. But, did you have to learn to somehow put to one side anger, resentment, the what might have been?
So I think I dealt with that very early on. There's absolutely no point being angry about it because, it is what it is. It was nobody's fault particularly.
This is part of a podcast series supporting my pain. Still, this medical research project which is looking at chronic neuropathic pain, looking at all all aspects of it. If you could say one thing, as someone who's been living with chronic neuropathic pain and you were able to speak to the medical researchers and so on who are involved in this, what would you say from your experience, Frank, that is really important for them to understand about your experience.
When you're asking two different questions that there's a there's a different answer I would give to the that those suffering from chronic pain and a and one to the medical researchers to those suffering, like me from it. If you don't already find distractions, it's all about distractions. So the best distraction I find is weirdly, is travelling. Be that cycling round Richmond Park in a in a with a hand bike attachment, or going somewhere interesting because the the stimuli that you are seeing, hearing, breathing act as a, as a distraction. It's a form of pushing away the pain. The pain is often at its worst or most annoying when I'm lying in bed next to my other half. But you know, I like trying to sleep 3:00 in the morning. You know, I might wake up, go to the loo at three in the morning, get back into bed, and I cannot get back to sleep because, yeah, the yeah, yeah, the the pain is more intense, but it's irritating enough. It might be a tingling, pins and needles sensation in my foot, and it's enough to keep me awake. And there's nothing I can't do a distraction at that time of day. So often, you know, I'm awake for 3 or 4 hours in the middle of the night, and wake up bleary the next morning to do a full day's work. That's quite hard. Sorry. It's a long, long winded answer, but it's all about distracting yourself or your brain from that. From the pain. What was my message? What would be my message to the researchers? Hurry up please, because you know I'm not going to be around for much more than 2020, plus 30 years at the most. So, it would be great to have some relief from this, you know, before I check out.
Frank Gardner talking to me about the impact of living with neuropathic pain.
Our market is deeply moving to hear that from Frank, and a reminder that there are so many people living with excruciating, life changing neuropathic pain. And the more that can be done to raise awareness of that, the more chances of finding better support and understanding. And that's absolutely one of the crucial goals of the Pain Storm Research Project.
And this is Pain Cast Pain Storms official podcast, and you can find out more via the Pain Storm website. Fiona, you spoke about the help and support being a vital part of the overall picture of one's own pain management, and this in particular when you went to visit pain storm researcher Doctor Whitney Scott at Guy's Hospital in London. And listening to that, it struck me what a hugely important thing it is to understand and understand the wider psychosocial impact of living with neuropathic pain.
Solutely. Yes, being understood or perhaps I should say not being understood or being discriminated against even is one of the most difficult challenges of living with neuropathic pain. Whitney Scott is a clinical psychologist researching into the role of psychosocial factors in the experience and impact of neuropathic pain. I went to visit her, and I began by asking her at what point she would see a patient.
So I often see someone living with pain in the context of my clinical work. We're based in a speciality pain service, so that means that in many cases, a person has been living with chronic pain that's been affecting their life for a really long time. And it typically means that a person has tried many different avenues of treatment. Often, you know, medical treatments like medications, for the pain. And those haven't been working as well as we would have hoped. And the pain continues to have a big impact on their life. So when I see a person in my clinical role, often it's about supporting them, with, you know, this very understandable impact that pain can have on, you know, their emotional well-being, their social life, the activities they care about and so on. And then I guess in terms of the type of treatment I offer or the things that I help people with. It's a bit of helping to shift focus, and where to place hope. So, you know, further, exploring pain medications or strategies to reduce pain makes a lot of sense. And a person's experience may tell them that it may not be useful anymore, or it may not lead them where we want to go or where they want to go. The treatment that I deliver, then that's sort of a form of cognitive behavioural therapy, that helps people to manage the impact of pain on their lives, as well as to notice the really, you know, normal thoughts and feelings that come with pain and how they respond to those thoughts and feelings. This treatment approach doesn't focus on reducing the pain or controlling pain, but rather helping people to adapt to the very real challenges that pain brings, and then finding new ways or different ways of navigating life alongside pain so that it can be fuller and richer and more satisfying in the presence of these really challenging experiences that come with pain. So we shift hope onto a different outcome, rather than focusing on pain control or pain relief as the main priority.
It's really interesting that you use that word hope. Because when they come to you, there might be in that hopeless situation and that hope that might have started after diagnostics is all I hope I can be cured. And the gradual realisation that living with a long term pain, the cure isn't necessarily that end goal, but because, well, the whole world of of pain is a very large one. Out out there. You mentioned CBT as, being one possible way of leading to renewed hope and a renewed relationship. What other things can you point them in the direction of?
Yeah. So I think and as you sort of said, the world of, treatments for pain is very wide and varied and some treatments will focus on, as I said, kind of reducing or controlling pain. And other treatments will focus on a person's life and quality of life alongside pain. And that's typically what, you know, behavioural or cognitive behavioural approaches to pain support people with. And there's a range of different, you know, treatments that fall under that category. We also know that things like movement and exercise can be quite helpful for people with pain. Again, not as a cure for pain or even perhaps as a strategy that reduces pain because for many people, moving is painful and can, contribute to, you know, temporary increases in pain. But we do know that, you know. Movement is really helpful for a person's overall health. It's really important for mental health. And it can help people do other things that they care about, like socialise. So if a person is has better, you know, physical activity levels, it may be that they're able to participate, you know, in events or with people, that they care about. So for that reason, sort of movement and exercise based treatments are seen as very important for people with pain. But I guess it's important to emphasise that there's no one size fits all. And it's about each person finding. You know, an approach to movement and exercise, that works for them alongside their pain. And certainly our physiotherapy colleagues would be very well placed to, explore that further.
How difficult is it to make that shift in perception? You mentioned CBT, but but you must quite often sit with with people and wonder how how can this shift actually happen?
Yeah, definitely. And I guess kind of going back to something I was saying before he mentioned, you know, the word being angry. You know, having pain for which, you know, nothing seems to be working. And I would always start by again acknowledging and validating, you know, that anger is really understandable. And, you know, of course, you're angry in this context. That makes a lot of sense to me. And certainly, you know, we can talk here about, you know, supporting people, to, you know, respond differently to their pain. Changing that relationship with the pain in the service of maybe allowing them to do things differently in their life or to do more of the things that they care about. And of course, that's a very difficult thing to put into practice. And part of the work that I do with people in the form of CBT that I use often, is about acknowledging those really difficult emotions that come with pain, and acknowledging when that relationship feels like a struggle against pain, and then seeing if we can, you know, when we make space for the physical sensations of pain or the emotions connected with pain, to be there in a given moment as they are, does that give the person any, you know, room or flexibility to rather than struggle against pain, to move forward alongside pain? So that's that different quality of relationship. And of course again we're sitting here talking about it. It's a lot easier to talk about than it is to do. So that's something that, you know, we support people to do. And, you know, get practice with doing in the context of, you know, that kind of therapeutic relationship because it is a difficult, task and one that, requires support and, you know, practice over time.
Doctor Whitney Scot, clinical psychologist and researcher with Pain Storm, working with a team including Professor Head Crombie from the University of Kent and the vital areas of the impact of psychosocial factors in neuropathic pain. You're listening to Pain Cast, the official podcast of the Pain Storm Research project. I'm Fiona talking tonight.
And I'm Mark Smalley. Fiona, we've called this episode. Whose pain is it, anyway? And that's what you asked Professor Andrew Rice. The sort of teaser, I suppose, for learning more about the patient clinician relationship, wanting it, needing to be understood.
Yes. And I have to say that Andrew's own pain management approach is that great combination of understanding the individual while being a global force in pain research, embracing different cultures and approaches in the treatment of neuropathic pain. Well, I met up with Andrew one sunny June day in the beautiful gardens of Green Templeton College in Oxford.
Neuropathic pain is pain caused by damage or disease of the the sensory nervous system, the system that makes you feel, touch, vibration, warmth, all those kind of things. And it's a very, wide array of conditions. So my particular interest is in an infectious diseases. I mainly came into it through HIV, but I also worked with leprosy and shingles, for example. Other areas are things like diabetic neuropathy, probably the commonest cause of neuropathic pain, worldwide. And then there are specific toxins of which some of the lifesaving drugs taxol, vinca alkaloids, platinum's, which are used to save people to live with cancer, we know give peripheral neuropathy, as you know, and not all those cases are peripheral obviously a painful. So our $64 million question is why do some patients with neuropathic pain get heavily impacted and others don't. And then there are other conditions like nerve trauma. We did a lot with the military. Particularly fascinating condition is something called non freezing cold injury which you would have known as trench foot. in history still very prevalent in the British Army, a cause of, career ending injuries that can cause a very localised neuropathy. And there are countless other causes. And I think one thing for the physician to be aware of is the context of that. In other words, if a patient has got one of these conditions, then perhaps you're more likely. And then there are causes inside the brain which are important. So a stroke can cause neuropathic pain. Multiple sclerosis a very common cause of neuropathic pain. Often an early presentation of Parkinson's disease is pain.
How much does the the word and the concept of disability crop up to do with pain? And is it should it be recognised more as a disability, and a hidden disability, which is as much of a disability as as perceived?
You've just taken the words out of my mouth. The the phrase we often use is pain. And many of our patients use pain is the hidden disability. If you're walking down the street and you've got a leg missing, people see that it's obvious to them. Pain is internal. And therefore we describe it as the hidden disability. So one of the things we've been doing a lot in my group, we have a historian, Sara Dickson Smith, embedded in the group, and she's been looking at the patients of, of soldiers who who received amputations in the First World War and looking at their pension records, which have their own own accounts. And one thing was very clear, and it remains the case today, that when they're being assessed for that disability, the civil servants were very keen to keep pain out of it because it's so difficult to measure, and it's so subjective. Whereas they actually, quite understandably preferred things that they could measure, like the length of the amputation stump, for example. So this concept of hidden disability is wider than just the sort of social perception that affects things like assessment, for disability, for example.
And there's the emotional aspect of, of not being un understood. Even within your own household, within your, you know, the people closest to you. There are so many, emotional. Yes. That's to this and that that, that needs again of, of just wanting to be understood is, is absolutely huge. So there are there are many conversations and I know I've had many conversations about this is a disability. It's an interruption to my life which has infected how I can operate in my life, how I can earn my living. And you know, the relationships one has, all things which constitute disability.
And I think there's another factor there that many forms of chronic pain can be quite variable and episodic. So one day might be pretty good. And then next day, for, no real reason can be not so good. And then people around you don't really understand that variability. And that's always quite challenging to deal with, I think.
Yes. And I, I think as a patient, sometimes you just clam up because you think, I'm. Boring, though, you know that. Say in at once again. Now I, I really don't feel I can come out to to dinner or for a drink because that restaurant, it's it's really hot. My my my legs, my my body won't react in that. Okay. Well, she said boring.
But do you get bored as well? Repeating the same story? Having to almost explain yourself.
I, I don't think I get bored because I've become, I've learned to really stand up for what I believe in, and, to the extent other people might be quite bored. Oh, here she goes again. But I, I believe in and speaking out because I think there are a lot of people who who wouldn't have the courage or the opportunity to speak out. And if I'm saying this a bit of a, you know, problem area, I'll do it because it might not dripping tap might just have, an impact. Hopefully a lot of this research will lead to wider awareness, better perception and, prediction and and treatments. What's excited you about what's happening?
Well, for the past couple of decades, pain research has evolved from being a very competitive between individual teams. But not too much collaboration. Largely through European funding. I have to say, into being, at least in Europe and the UK, intensely collaborative. So we collaborate with within the same grant, with psychologists, with, physicians of all sorts of disciplines, with scientists of different disciplines. So that collaborative nature is really exciting. And I think beneficial. And you can look at some of the past European grants that have been in this area to see the kind of progress that's been made. That's a major step forward. What's really exciting about Pain Storm is there's a new bunch of collaborators. And these are called our expert patients or people with lived experience who are making, you know, like yourself, an incredibly valuable contribution, bringing new ideas, asking the obvious questions that we haven't asked. So that's the exciting new element. The other thing that really excites me is I'm near the end of my career is that the fantastic number of young researchers coming into the area, and that's so stimulating with new ideas. They're not afraid to challenge the orthodoxy. So those are the two exciting moments. But but collaboration and this wonderful new bunch of collaborators who we're learning to work with.
Fiona, you were talking there to Professor Andrew Rice, a key figure in pain Storms neuropathic pain research project. I'm Mark Smalley.
And I'm Fiona Taunton. I'm a patient partner in pain storm living with the effects and impacts of neuropathic pain following treatment for breast cancer ten years ago. Neuropathic pain can arise, as we had for a number of different reasons. It's notorious for not responding easily to medication, making that whole area of pain management extremely difficult.
Fiona, I know that you and so many other patients are just so keen to find ways of expressing your pain so that others like me, can begin to understand what you're living with. And part of that for you is, is writing, isn't it?
Yes, absolutely. I've been immersing myself in lots of different ways of expressing pain through artwork, through music and writing. Here's one I made earlier, summing up the frustrations of the pain scale. I've called it off the scale on a scale of 1 to 10, where one is the quietest, barely audible and ten is the loudest. Thank you. I say, interrupting as you look at me kindly, head tilted to one side. Thank you for trying to understand me. The quietest Featherlight soft touches my skin, and I feel each blade of the bird's wing cuts silently drawing blood. Stinging. Take it away. Make it stop. Climbing each stair with dread. I am a cacophonous interruption to the world. Each step a wild animal whose jaws shred my feet greedily. Ten is the loudest. It is a black bird owning the evening, oblivious to anything but its own song woven across the summer months. But all I can hear is the raucous, mocking sound of my own body so loud that I mouthed the words make it stop, make it stop. Find me another scale. The peleg and cilantro of Indonesia. The long breath of an Indian raag. An exotic pentatonic. A scale that beckons another world. You throw the dice. I can't see the numbers.
Fiona. That's a beautiful piece of work. And there's something about you as a music broadcaster as well. They're finding some solace in music rather than perhaps in the medical space.
I think when you're faced with especially, a new clinician, when you have to go in and present yourself and perhaps a very short consultation, you want to break that clinical atmosphere and do it in in ways that means something to you. And it can be an act of courage for patients to be able to do that. But if you can be honest, if you can be outspoken so they have to listen to you, so they have to lift their eyes off the desk. I think it's a start. It's not the answer, but it's a start.
But as a patient partner, using writing and other techniques to engage with the doctors and the medical researchers, and I've seen there's a real interest and engagement there.
There really is, you take people out of their expected comfort zones and you get to know the the real people behind the research and what people are interested in. And I think there's a real thirst to be able to express things in different ways.
Well, shall we end this episode? Since we've been talking about music with you taking to the floor?
Well, as you may have heard, in our last episode of penthouse, I spoke with the dancer Anisha Subramaniam, and I'd met her at Deborah Hatfield's Encountering Pain conference a few years ago, and I wanted to meet up again to explore some more about my relationship with my pain. Now, I don't want to view my pain as something I'm angry with, or that I want to push away. If I'm living with pain, I don't want to live in conflict with it. And Alicia's approach allowed me to be in harmony with my mind and body. But before taking our shoes off, we chatted around her kitchen table.
For me, bringing dance into people's life is something that I absolutely love. And my own practice has taken me into different spaces, from hospital psychiatric day centres, working with, various, you know, groups with different, various disabilities. So this was in some ways not new, but also totally new because, I hadn't heard about people who were suffering with pain chronically. I mean, that's quite, quite a challenge. Suffering is very much about our own psychological emotional response to to that, to our situation. So I started, thinking about, that practice, which is a practice of karuna, of compassion. And that's was the title of the piece that I did and the workshops we did around that. And it it is something that, has kind of, I would say either coloured or underpinned my whole practice and whole life, this idea of care. Hopefully I will, share something that everyone can feel really alive at different points of, you know, either their pain or, how they manage their day. Because I think that's what we are all here, right? To just feel a sense of aliveness. And I know as a mover, that's what I do, when I move a little bit, if the world changes for me, we just starting to just visualise. From our big toe to our little to. So you can first visualise your right foot and then your left. I love the feet, I love the foot. But even I don't sometimes be that much attention to it. So this is a really good time to do that. So if you can go from the little to next to see if you can articulate these toes like we do with our palm, our fingers. And now tap forward, back, tap and back. Walk towards each other and away from each other.
Hop hop.
Hop hop. Yeah. Great. That felt so fun. Yeah.
Oh, I just feel so wonderful. It just. I'm noticing that although I'm a bit out of breath, I can feel my breath actually moving through my whole body. I love that moment when we were playing peekaboo with my feet, because that was what we were talking about earlier. That sense of fun and and laughter. And I really felt it, actually, how grounded my hips were that this was. Don't worry, doing a thing because I'll hold you. Thank you so much.
The overwhelming joy there of a dance encounter between you, Fiona and Anusha. Super Maniam. And for me, that was such a special thing. The two of you in her living room and finding a way to dance through your pain. How does it feel now, listening back to that encounter?
Oh, I loved it then. I love it now. I love it every time I sneakily listen back to that. I am in that space with Anusha once again, feeling a real harmony in the relationship with my body, with my feet. Despite all the burning and the drilling that I feel in them, it's part of a whole toolkit of things that I can do for my neuropathic pain management. And I should stress, really, that that's my approach. Neuropathic pain has got so many different characteristics, and we all have very different needs. So I hope that this episode has suggested just a few ideas that you might want to follow up.
It's clear to me that Pain Storm is a really exciting project, which will make a difference to people like you. Fiona living with neuropathic pain. And there's more about that on our website where you'll also find an animation, Fiona, that you were part of for the BBC ideas website, and it's called What's the Point of Pain?
Yes. And if anything about pain can be fun, have a watch. It's a brilliant animation, I think. Well, next time on Pain Cast will meet more of the Pain Storm researchers and we'll find out how their work is going. And we'll talk about the all important role that people with lived experience can play in research.
But for now, for me, Mark Smalley, goodbye.
And goodbye from me, Fiona talking tonight. And thanks for listening.
And just take your time very gently. We're just going to open our eyes. Take your time. And when we first open our eyes, we might just notice our own palm, the colour of our clothing, or the carpet or the floor. And then very, very slowly bringing everything else that is in the room back into our vision. And smiling. You.