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Pain management programmes can ‘remove the barriers’ that prevent people with pain from living a normal life, says Dr Owen Hughes of the Pain and Fatigue Management Centre in Bronllys, Wales

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Presenter Lionel Kelleway returns to the Bronllys Residential Pain Management Programme where he himself was a patient to talk with staff and patients about what happens on the programmes and also shares his own experience. Mary Rhys Williams describes her work as an occupational therapist helping patients to adjust their lifestyles and consultant Mark Turtle explains what makes a patient suitable for a pain management programme. We also hear from Sheila Day, whose partner has chronic pain, about the challenges faced by the loved ones of people with pain.

Issues covered in this programme include: Family, confidence, mental health, multi-disciplinary, chronic fatigue, relationships, depression, pain toolkit, psychology, muscle spasm, meditation and reiki.

Lionel Kelleway: Hello and welcome to Airing Pain, brought to you by Pain Concern, a UK charity that provides information and support for those who live with pain. Pain Concern was awarded first prize in the 2009 NAP awards in chronic pain, and with additional funding from the Big Lottery Fund’s ‘Awards For All’ programme and the Voluntary Action Fund Community Chest, this has enabled us to make these programmes.

Berni Bustin: The difficulty with having a chronic condition is that it completely undermines people’s confidence, their sense of self-esteem, their sense that they can actually take an action in their life that makes a difference.

Rhian Evans: Last year actually I had a mental breakdown and I got as bad as I could get.

Mary Rhys Williams: Particularly with family and friends, it’s often either, ‘Well, I don’t understand what’s going on with you, why don’t you get better?’ or ‘I’ll just look after you’.

Sheila Day: You’re actually not quite sure how to cope with it. What are you meant to do? Are you meant to keep saying, ‘Are you alright, what can I do?’ If I did then you would have said, ‘no, there’s nothing you can do’ and you would have got more cross and I would have got more frustrated: ‘This is not my fault.’

Kelleway: Our aim on Airing Pain is to be led by you on the topics and issues we explore. I’m Lionel Kelleway and over the last few months we’ve made numerous references to multi-disciplinary pain management. Well, in response to your comments, today’s programme is coming from Bronllys Pain and Fatigue Management Centre in rural mid-Wales. It runs three-week residential management programmes to help people with pain and/or fatigue learn skills for managing their condition. And it’s something of a personal journey for me, because in January 2008, I was a resident here and now I’m a graduate of the Bronllys pain management programme.

Evans: It’s been something I’ve been needing for 15 years.

Tracy Thomas: I’ve come one person; I’m leaving a completely different person.

Kelleway: Owen Hughes is a consultant counselling psychologist and head of the Fatigue and Pain Management Programme here at Bronllys. Tell us a little bit about the programme: what do you do here Owen?

Owen Hughes: Well, what we do is we work with people who have chronic pain or chronic fatigue problems. They come for three weeks on a residential programme and learn how to manage their pain or fatigue, so that it interferes less with their quality of life. What we don’t do is cure people of their underlying condition because, as far as we know, both of those conditions are currently incurable. But what we do do is try to remove some of the barriers to people living a normal life. Chronic pain and chronic fatigue may not kill you, but they can certainly end your life as you know it. So it’s about understanding what’s happened to people in their lives, what’s changed and understanding what they actually want their lives to be about now. So it’s about looking to the future.

Kelleway: I suppose it’s a bit of an indulgence, but I would like to introduce you all to my best friend and loving partner Sheila who, along with me over the last 10 or 11 years has had to live with me and my pain. Can you remember what I was like before I had chronic pain?

Day: Quite easy going [laughs]… You had your moments of not being easy, but on the whole you were quite a jolly sort of person, getting on with normal day-to-day things.

Kelleway: And what about after, when I had the operation?

Day: That was totally different: really down, tearful, lots and lots of hours of not speaking, suddenly disappearing out of the house, not saying where you were going – not that you ever went far, it was mainly around our meadows – but just not communicating whatsoever.

Kelleway: Was I difficult to live with?

Day: Quite. But because I loved you, I stayed with you [laughs].

Kelleway: What were the worst times? I know I used to get angry, I used to snap, I used to get extremely cross and throw things…

Day: All of those – not so much the throwing things – but the snapping used to upset me more than anything, because I probably hadn’t done anything wrong, but because obviously the pain was very bad for you, you had to take it out on somebody and I happened to be the nearest thing.

Kelleway: One of the things that people often say, who live with people in pain, is that they feel frustrated because they can’t help with the pain and that is a problem for them rather the person suffering from pain. Did you feel that?

Day: Oh yes, definitely. And I suppose a little bit selfishly, you tend to stop asking a lot of the time, ‘have you got a pain?’ because obviously you have. So, you just don’t say anything, which might seem a little bit unkind really. It’s just frustrating not being able to do anything to take it away, even if only for a short time.

Kelleway: You’re listening to Airing Pain, presented this week by me Lionel Kelleway and brought to you by Pain Concern, the UK charity providing information and support for people who live with pain. Before we continue please bear in mind that whilst we believe the information and opinions on Airing Pain are accurate, based on the best judgements available, you should always consult your health professional on any matter relating to your health and wellbeing. He or she is the only person who knows you and your circumstances, and therefore the appropriate action to take on your behalf.

Hughes: Mood has an impact on people’s experience of pain. So if people are feeling depressed or they’re feeling anxious, guilty, angry… all of those things can increase people’s experience of pain and make the pain seem worse. And we know that there are actual physical changes that happen in people’s nervous systems when they’re experiencing those sorts of moods. So this programme is about helping people to feel more confident about their lives so that they don’t feel so anxious, so they don’t feel so depressed and they can see a future.

One of the ways we do that is by showing people that they can be more physically active and that they can be more socially active as well – so they can go back to work, if they wish to do so; they can spend more quality time with their families, play with their grandchildren and enjoy life – go down to the pub and spend an evening with their friends, if that’s what they wish to do.

Kelleway: One of the important principles here, as I remember from my attendance here three years ago, is that pain doesn’t equal harm.

Hughes: Indeed, hurt doesn’t equal harm. In acute scenarios where people stub their toe or get a paper cut etc. then yes, the pain is associated with a harm. But, the sort of pain that we’re dealing with here is the type that has lasted beyond the normal healing process. For most of us, the vast majority of conditions that human beings get, the human body will have healed itself within three months. The people we see here have usually had their pain problems for an average of eight years, so they’ve gone well beyond the time when their body has carried out the normal healing process and what they’re now into is they have a pain which is a product largely of their central nervous system, as opposed to any ongoing damage.

Rhys Williams: How are you cutting the lawn? Are you still cutting it all in one go or are you taking a few breaks?

Kelleway: No, the last time I said I was going to cut it all in one go I got slapped by one Mary Rhys Williams.

Rhys Williams: Yes, I remember Lionel as a patient and that was what the problem was.

Kelleway: Well, all you’ve got to do is rearrange the weather, because the weather in Carmarthenshire means that if you don’t cut it all in one day, it rains the day before and it rains the day after.

Rhys Williams: I don’t care, you can do it the day after that.

Kelleway: For most people, I suppose, the perception of occupational therapy involves raffia, basket making and plasticine, so what has that got to do with the management of pain and chronic fatigue here at Bronllys? Well, here with me is Mary Rhys Williams, who is the senior occupational therapist here. Does it involve plasticine, basket work and raffia, Mary?

Rhys Williams: Not on the programme specifically, but if that would be one of your interests, then some of the things that we actually talk about on the programme would enable you to get some pleasure out of doing that without paying big prices. So actually occupational therapy is very much here as it is anywhere else in terms of helping people to enjoy what they do, but also to do it so that, at the end of it, there is a satisfactory outcome for them, without them actually saying, ‘I wish I hadn’t done that’.

Kelleway: Do the people who come here onto the programme actually do nothing before they come here then?

Rhys Williams: It’s variable. We have some people who, perhaps you would say, totally overdo, so they’ve arrived here almost at the point of exhaustion, because they’re so determined to get things done that they do it whatever price they pay. There are other people, who perhaps have had what you may call ‘unhelpful advice’, or perhaps advice for managing things in the acute phase, so they’ve got to the stage where they’re not very active at all. And it’s quite easy to get into that pattern of doing less and less, because you feel anxious, you feel worried, ‘what might happen if I do this and I can’t deal with it’ etc. etc.

So the message that we try to give here is that any kind of increase in symptom doesn’t mean that you’ve harmed yourself, it just means you’ve used a bit that perhaps hasn’t been used for a while. But, the longer you don’t use something, then obviously when you come to use it, the longer the effect of that from doing it. So, a lot of what occupational therapy here is about is breaking into what we look at as the ‘over or under activity cycle’, or the ‘Boom and Bust cycle’, in terms of ‘I have to get everything done today, in case I don’t get anything done tomorrow’, but actually quite often then you wouldn’t get very much done tomorrow, because you’ve pushed the boat out today.

I mean, we have a laugh here about, ‘do you realise you can stand up to watch television?’ And people think I’m being quite funny and what I’m actually saying is that when we go to watch television, we always sit down. Therefore, if the film is three hours long, that’s as long as you sit and nobody actually thinks about the idea that, ‘well actually, I could stand up behind the chair and still see the film. I can do a bit of ironing and still see the film’.

Kelleway: Mark Turtle is a consultant in pain management and anaesthetist at West Wales General Hospital, where he works for the health authority. Mark, your role here at Bronllys is largely in the assessment of people who are referred here. So what makes the pain sufferer that you assess suitable to come to Bronllys.

Mark Turtle: In my opinion, the person should have examined carefully the option of following the medical model. The medical model initially would be the model which every health care professional, in the whole world, applies. So, if an individual has a symptom, the first thought of any health professional should be that there may be a treatable condition which is causing the symptom, which can be managed and cured.

Kelleway: But one of the very early things I learned from my attendance here at Bronllys as a participant is that most of the people here felt failed by the National Health Service, by their GP and they saw this, the attendance at Bronllys, as the last chance cafe.

Turtle: Well as far as the last chance, in some ways I would accept that because either these people will have experienced other facilities within the health service or they’ve come straight here, in which case I hope as a part of our assessment process we will agree that the things that they’ve missed out weren’t pertinent to them, in which case we’re happy that that doesn’t need to be revisited. And whilst conventionally the health service will offer what it has got to offer, and if it hasn’t got a cure for the condition, then it tells the person just to get on with it, here we actually help them get on with it.

Kelleway: You and I go back quite a long way, you’ve been my pain consultant for a number of years, we served together on the Welsh Pain Advisory Board. Let’s talk about me for a minute.

Turtle: Alright, yeah.

Kelleway: What made me suitable to come here to Bronllys?

Turtle: Well I think the fact that, as you say, we’ve known each other for some while and yet you’ve still got your problem demonstrates that I wasn’t able to provide you with a solution. I can only provide what I’ve got to provide. We’d gone through my toolbox.

Kelleway: I have to say that some of them worked very well, but it was the side effects that stopped me taking the drugs that you prescribed.

Turtle: Yes and it’s a balance isn’t it? Every drug is a potential poison and it’s getting the delivery at the right dose at the right time to an optimal level, at which point you have to decide whether the risks and side effects are more or less than the beneficial effects. In your case clearly you had some beneficial effects, but you had some problems as well and the problems dominated the benefits. So one way or another we still worked through the toolbox and got to the bottom of the toolbox and rather than telling you to clear off we’ve found, I hope, some way of helping you cope with your predicament.

Hughes: When people get referred to the centre the first thing we do is we invite them to attend an information day, so people can come and find out exactly what it is we do here at Bronllys and that’s a four hour session which is held during the day. And at the end of that people then make a decision for themselves, whether they wish to continue and come for an assessment, where we look at their individual problems in more detail, or whether actually that they’re still looking for a medical cure for their problems, in which case the program that we have here is not necessarily suitable for them.

Kelleway: You’re funded by the Powys local health board, but participants come from outside Wales as well?

Hughes: Indeed, yes people can be referred from anywhere in the whole of the UK, or indeed beyond, as long as their local NHS board or trust agrees to the funding of it.

Kelleway: What does it cost?

Hughes: It costs between four and five thousand pounds.

Kelleway: That’s quite a commitment in terms of the National Health budget.

Hughes: It is indeed.

Kelleway: And presumably in return you have to give some assessment of the success or failure of the participants that come here. How do you do that?

Hughes: Well one of the things that we do right the way through the process is ask people to complete a set of psychometric evaluations. So we look at actually how people are functioning when they’re first referred, when they start the programme, when they finish the programme and up to a year later as well. And what we have also done is follow people up five years after they’ve completed the programme here, to see whether they’ve maintained the gains that they have made, and I’m very glad to be able to say that people are still maintaining the benefits of coming here five years later, which is something which very few medical interventions for chronic pain can claim.

Kelleway: I remember in the early days I saw myself very much as a victim of pain. Did you feel like a victim of my pain as well?

Day: Yes, to a certain extent. I used to get so frustrated at times and I’d think, ‘this is not my fault’, you know, and get very angry. But I’d perhaps go somewhere upstairs and just sit and be quiet for a while and think, ‘he can’t help it’. I did on one occasion have cause to go to the doctors and she did ask me how things were and I did break down and cry.

You feel helpless, you don’t know what to do, you’re actually not quite sure how to cope with it – what are you meant to do? Are you meant to keep saying, ‘Are you alright, what can I do?’ I think that if I did you’d have said, ‘no there’s nothing you can do’ and you’d have got cross, and more cross, then I would get more frustrated. So I just used to go away and have a few quiet moments to myself and sort of think, ‘well, never mind, I know he can’t help it, I’ll just try and stay as calm as I can’.

Rhys Williams: I think there’s an element of misunderstanding by the people around them, so particularly with family and friends it’s often either, ‘Well, I don’t understand what’s wrong with you, why don’t you get better?’ or ‘I’ll just look after you’. And, you know, neither of those are actually suitable. There needs to be something in the middle and I think if nothing else this programme dwells on the themes of helping patients or actually giving patients permission to say, ‘what is it I need and how can I go forth and get that?’ if you like. So people with long term conditions find it really, really difficult to say, ‘no, I won’t help you’ and they also find it really, really difficult to say, ‘will you help me?’

Kelleway: This is Airing Pain at the Bronllys Pain and Fatigue Management Centre in Powys, with me, Lionel Kelleway.

If you’d like to make a comment about the programme or put a question to our panel of experts, then please do so via our blog, message board, email, Facebook, twitter, or if you prefer a good old fashioned pen and paper then the address to write to is Pain Concern, 1 Civic Square, Tranent, EH33 1LH. All of this information is on our website at www.painconcern.org.uk. It’s a one-stop resource to get further information about this programme, including a glossary of the medical terms used and to download this and all previous editions of Airing Pain, along with a host of information on how to manage your pain.

Bustin: It completely undermines people’s confidence, their sense of self-esteem, their sense that they can actually take an action in their life that makes a difference.

Kelleway: Berni Bustin is one of two psychologists here at Bronllys. So, I mean there’s quite an emphasis Berni on psychological help that you can give pain and fatigue patients. So, why the emphasis?

Bustin: When you have a condition that doesn’t seem to be justifiable by any sort of medical investigation, or the intensity of the pain often isn’t justified, or often there’s no cause identified, people often get this sense that, ‘it’s all in my head, nobody believes me’. And it’s quite possible on occasion that they are disbelieved. Our culture is not very kind to people that are seen as not pulling their weight perhaps. And that in itself creates real psychological difficulties for people. To be suffering phenomenally with this condition, not be believed by the only people you think that can help you and then to be finally told, ‘well, I’m sorry, you’re just going to have to get on with it on your own’ – why wouldn’t you be depressed and anxious about that? It seems a perfectly natural cause.

Kelleway: How can you help then, me as an individual, change my relationships and the way I feel away from here?

Bustin: That would depend on a session that you and I have together Lionel. It really is as unique and individual as that though. I don’t know what you want out of your life and until we’d spent some time together… it may be that you don’t know what you want out of your life at this point either. And you don’t perhaps have a vision of where you want to go, how you would like things to be, because actually if you have got a chronic condition it can knock your feet out from under you with even thinking you’ve got the capacity to bother to think about that. Because every day can be just such a struggle getting from the getting up to the going to bed, that to actually step back and think, ‘well there’s a life out here to be lived’. Most people with a chronic condition don’t even take that breath and have a look. Actually it’s that nose to the grindstone every day with coping and surviving. So what they get when they come here is that opportunity to put the brakes on, stop, step back and breathe and have a look, and think, ‘Oh yeah, there is a life to be lived after all.’

Kelleway: Tracy Thomas is a long term chronic pain patient and she joins us on the last day of the one hundred and ninety second pain management programme here at Bronllys. How long have you been a chronic pain patient?

Thomas: It started five and a bit years ago. I pulled a muscle in my neck doing yoga and then for the next two and a half years it kind of happened more and more commonly – the simplest thing I’d do and my neck would go into spasm. And then two and a half years ago I pulled my neck, or rather it went into spasm and the pain moved into my back and I’ve been in constant pain since.

Kelleway: Do you think the people that were first treating you, your GP and that, understand that pain can take your life away?

Thomas: No, I don’t think they do. I don’t think when you go to your GP – I’ve seen a lot of different GPs along the way and I have found sympathetic ones but I’ve also come across some very unsympathetic ones. I remember one GP just telling me, ‘some people just have more muscle pain than others’ and I wanted to smack him.

Kelleway: Because one of the early things that they tell you here on the pain management programme is that this is not a cure – you do know that you’re going to go away with your pain. How do you feel about that?

Thomas: Part of what they teach you here is acceptance and they’ve done a very good job of it because I have accepted it and I don’t feel upset about that, I feel positive. I feel I can go away and I can use all the tools that they’ve given me to cope and deal with the pain and that I can now look forward and have a great life, with pain, but it doesn’t necessarily have to control my life and that I can control the pain and it’s going to be good.

Kelleway: Rhian Evans is a long term chronic fatigue patient. How’s it been Rhian?

Evans: It’s been something I’ve been needing for fifteen years and it’s eye-opening because it was all very obvious things really, if you really put your mind to it, but putting it all together is brilliant.

Kelleway: Some participants that I have kept in contact with and those that I spent time with here three years ago saw this very much as the last chance cafe.

Evans: Indeed.

Kelleway: If you fail here then there’s nothing left for you. Did you feel like that?

Evans: Absolutely. Last year actually I had a mental breakdown, and I got as bad as I could get. I found alternative help – going to an alternative healer that practices Reiki and that helped me no end. So I had a lot to bring with me to this and this was just like completing the book, as it were, you know like a recipe book.

Turtle: So Lionel you’ve spent the three weeks on the pain management programme, as you say three years ago. How would you say it changed your approach to the management of pain?

Kelleway: Well, it changed me immediately because I was here with seven other people who were in pain and that was a liberating experience to know there were people who were also suffering. But what the course gave me was the freedom to be in pain, do you understand what I mean? I saw the course, the programme, as a facilitator to understand that it was alright to be in pain. One of the things I always remember you saying in one of your marvellous lectures was, ‘You’re alright. It doesn’t matter who you are or what you feel; you’re alright.’ So that’s what I went away with, but it took me a long time afterwards to – I hate the term unpack – but to unpack what I took away from here, but I took a lot.

And I don’t know that, three years later, that I consciously use any of it, but if I think about it it’s very much a part of my life and the words said by many of the people here often make me smile. And it’s part of what treats my pain, I suppose, every day. It still hurts like hell. It hasn’t gone away, but I have a much better life with my pain now after being at Bronllys. Thank you.

Turtle: You’re welcome. And what would your nearest and dearest say has been the outcome of coming on the programme?

Kelleway: Well, she can actually tell you herself.

Day: I know it was meant to be ‘learn to love your pain’ and I do think that you perhaps have learnt to accept it a little better. You’re certainly a lot brighter, you’re more or less back to your old self – there’s a lot of people that recently have seen you that haven’t seen you for about a year or so have suddenly said, ‘It’s just like having the old Lionel back again.’ And you’re so much easier to get on with now. We don’t have the snapping, or only occasionally, but not just out of the blue, you don’t get snappy. And you’re just back to, sort of, as you were – a lot, lot better.

Evans: It was remarkable the way they videoed us on the first day, and then videoed us yesterday, just to see the difference in walking, standing from sitting and then walking up and down stairs. The difference was just remarkable in three weeks.

Kelleway: You now know it’s alright to be you, it’s alright to have chronic fatigue…

Evans: Yeah, learning more about me was the awareness and actually looking inside yourself, the meditationy-type things and psychology. That was mind blowing if anything and I had quite an emotional week last week.

Kelleway: And for anybody else suffering like you, would you recommend Bronllys?

Evans: Oh without a doubt. In fact I’d recommend the teachings that they have here in schools to be quite honest – life skills these are.

Kelleway: It’s the end of a fascinating day here at the Bronllys Pain Management and Fatigue Centre and I’ve brought together once again Owen Hughes and Mark Turtle. I’ve had a chat to all your participants today when they were down here for coffee this morning and there was this palpable feeling of elation. Everybody was on such a high today – not just because today is release day, but because they all, to a man and woman, felt so grateful for what you’ve done for them today. But the practicality of being home again is something quite, quite different – what do they do and how do you prepare them for it?

Turtle: Well, in the final week of the programme we spend an awful lot of time addressing those concerns and also perhaps getting the crystal ball out and talking about what might happen when they get home and how they might deal with that. And it’s certainly one of the things that we’re very aware of, that when people do leave here we always say that we are here for them, we’re at the end of a phone and everyone’s more than welcome to come back and see us for sessions. And we also run these two top up days throughout the first year, because we are very aware that the situation that they find themselves in here is very different to their situations at home. And so understanding how other people might react – whether that be the family, their GP, their work colleagues, their friends – these things need to be prepared for.

Hughes: One of the things we’ve got to remember about the programme here, which is not exactly unique, but it’s unusual, is that it is a residential programme. The subjects who come on the course here do knit together very closely, and of course they are cocooned, they’re protected against the threats of outside life. So this going out into the wilds, as it were, is a problem which is specific for a residential programme. Of course, residential programmes have other advantages as well, so it’s like everything in life, there’s two sides to it.

I think you’ll find that over a period of time the vast majority of people will have a degree of elation at this stage. The trick, if you like, is to maintain that because there is a natural fall off. But I think that if we were able to develop some system whereby we could maintain that momentum, then we would have a larger percentage of people who gained substantially in a sustainable fashion.

Kelleway: We’ve just said goodbye to the one hundred and ninety second completion of the programme here. What do you want them to take away from you?

Bustin: The confidence that they have the capability and capacity to take on whatever changes they need to live the kind of life that they want.

Evans: It’s been something I’ve been needing for fifteen years.

Turtle: You can achieve anything you want to in life, despite having chronic pain, but it may be that you actually need to find a different way of going about it.

Thomas: I’ve come one person, I’m leaving a completely different person – it’s absolutely amazing.

Contributors:

Berni Bustin, Clinical Psychologist
Rhian Evans, patient
Mary Rhys Williams, Advanced Occupational Therapist
Sheila Day, family member
Tracy Thomas, patient
Dr Owen Hughes, Consultant Counselling Psychologist
Dr Mark Turtle, Consultant Anaesthetist and Pain Management Specialist.

Learning how to live with pain and living with people in pain, and what pain management programmes do

Pain management programmes can ‘remove the barriers’ that prevent people with pain from living a normal life, says Dr Owen Hughes of the Pain and Fatigue Management Centre in Bronllys, Wales.

Presenter Lionel Kelleway returns to the Bronllys Residential Pain Management Programme where he himself was a patient to talk with staff and patients about what happens on the programmes and also shares his own experience. Mary Reese-Williams describes her work as an occupational therapist helping patients to adjust their lifestyles and consultant Mark Turtle explains what makes a patient suitable for a pain management programme. We also hear from Sheila Day, whose partner has chronic pain, about the challenges faced by the loved ones of people with pain.

Contributors:

Berni Bustin, Clinical Psychologist
Rhian Evans, patient
Mary Rhys Williams, Advanced Occupational Therapist
Sheila Day, family member
Tracy Thomas, patient
Dr Owen Hughes, Consultant Counselling Psychologist
Dr Mark Turtle, Consultant Anaesthetist and Pain Management Specialist.

How diet can help manage pain, the benefits of mindfulness, CBT and exercise, and a Q&A with pain specialist Mark Turtle

To listen to this programme, please click here.

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In this programme, Airing Pain looks at a range of lifestyle changes and psychological approaches we can use to help with managing pain. Dr Rae Bell tells us how a good diet can help in managing pain, telling us about foods which are natural painkillers and why we should perhaps give cola a miss. Ron Parsons describes the exercise routine which has helped him to manage his lower back pain.

Chris Main discusses Cognitive Behavioural Therapy and Vidyamala Burch explains how mindfulness can help people to live in the moment and accept pain while overcoming fear, anxiety and depression. Pain specialist Dr Mark Turtle answers your questions on weight loss, getting referred to a pain management programme by your GP and coping with visits to the dentist in our Q+A session.

Issues covered in this programme include: CBT/cognitive behavioural therapy, back pain, mindfulness, diet, lifestyle, exercise, weight, injury, stiffness, stretching, nutrition, anti-inflammatory, habits, pain beliefs, caffeine, Omega 3 and Omega 6.

Paul Evans: Hello and welcome to Airing Pain, a programme brought to you by Pain Concern, a UK charity that provides information and support for those who live with pain. Pain Concern was awarded first prize in the 2009 NAP Awards in chronic pain and with additional funding from the Big Lottery Funds Awards For All programme and the Voluntary Action Funded Community Chest this has enabled us to make these programmes.

I’m Paul Evans and each fortnight Airing Pain will look at the topics that affect us: the coping mechanisms, medical interventions and therapies that might help us regain control of our lives. And in today’s programme…

Rae Bell: People need to think carefully about what they are eating – not only the content of what they’re eating but how many times a day they eat.

Vidyamala Burch: It really was made plain to me that my situation was incurable and so whether I was going to have a good life or a life full of distress and suffering was partially dependent on whether I was going to take responsibility for how I live.

Ron Parsons: Some of the older people with the arthritic pain do find it difficult to do the exercises and yet there are others, and I can name one who is 86 years old, who religiously does her exercises every day in bed before she gets up and she knows the benefit of it.

Evans: More on those stories coming up. But first a word of caution, that whilst we believe the information and opinions on Airing Pain are accurate, based on the best judgement available, you should always consult your health professional on any matter relating to your health and well-being. He or she is the only person who knows you and your circumstances and therefore the appropriate actions to take on your behalf.

Now bearing that in mind, one of our aims on Airing Pain is to find answers to questions you’ve raised with us, so please do take advantage of this opportunity to connect with our experts via our message board, email and not forgetting pen and paper.

The first question today is about back pain: ‘My doctors told me that I will be in less pain if I lose weight. Will I? And why?’ Today’s expert is consultant anaesthetist and pain specialist Dr Mark Turtle.

Mark Turtle: Firstly one must remember that pain has a large variety of effects on an individual. It tends to reduce a person’s self-esteem. Being overweight also reduces a person’s self-esteem, so being overweight can have an adverse effect on the overall situation and therefore make the person less tolerant to their pain and to painful situations.

That’s one background comment, but I think specifically that this may refer to spinal pain and it is often suggested that people with spinal pain should lose weight. Now, there is a relationship between weight and spinal pain. It’s not a straight line relationship. In other words, somebody who is a little bit overweight will not have rather less pain than somebody who is grossly overweight and somebody who’s excessively overweight have more pain again. In fact, what happens is that if you look at the instance of pain and relate it to weight, there is a very small increase in the pain, as weight goes up, until a certain weight is achieved and then the increasing pain goes up excessively. So, in other words, there is a very small relationship, unless you are quite markedly overweight.

Now, quite apart from this evidence it does seem logical that somebody might lose a bit of weight to ease their back, because after all, the lumbar spine in particular, is the only structure which supports the top part of the body, so if the top part of the body weighs less, that part of the back has to do less work and therefore one would assume that it would be less painful. And then a final comment is that the evidence shows that levels of activity are probably the most important thing with regard to low back pain, in other words, increasing activity tends to reduce the problems whereas recumbency makes it worse. And of course the lower your weight the more likely you are going to be able to indulge in physical activity.

Evans: That’s consultant anaesthetist and pain management specialist Dr Mark Turtle. He’s also president of the Welsh Pain Society. Later in the programme we will be talking about nutrition and its role in pain management, but staying with lower back pain and physical activity for the moment, Ron Parsons lives with his condition and he’s also patient representative to the Fife Pain Management Committee.

Ron Parsons: I’ve got a lower back problem, which is basically fair wear and tear, probably from an old rugby injury. I’ve also got upper back fair wear and tear, which is causing pain in the neck and the shoulder areas and just over 18 months ago I broke a wrist, badly, which is turning arthritic now. First thing in the morning it’s very, very stiff.

What I did originally, was, go to a chiropractor with a lower back problem because it was really getting very painful. He did a good job on me but then advised me that if I wanted to keep the back in as good a condition as it could possibly be, that I’d have to go through a fairly strenuous set of exercises daily, which I have done religiously for 20 years. I still am quite painful first thing in the morning but once I have done the workout, you know, I can manage the day. I still get twinges, but I’m able to play golf and really participate in all the sports that I want to.

First of all I do a light warm up in the morning, just to get the body moving and get the body warm and then I go through a series of about 13, 14 stretching exercises, exercising different aspects of the lower back and there are a whole lot, I mean it’s a set of about 14 exercises and the whole thing with the warm up takes me about 35 minutes. I also now, of course, have started doing exercising on the wrist as well and the neck. And the neck is more again, a series of six exercises with the neck followed by relaxation exercise. So my whole exercise routine for the hand and the neck and the back now works out now to be about 50 minutes every morning.

Evans: Ron Parsons. You’re listening to Airing Pain, presented this week by me, Paul Evans, and brought to you by Pain Concern, a UK charity providing information and support for people who live with pain and also for those who care for and about us. You will hear about the importance of physical activity many times during the course of these programmes but another keystone of a self-help pain management regime is diet. Rae Bell is head of the multi-disciplinary clinic at Haukeland University Hospital, Bergen in Norway.

Rae Bell: Clinicians should start to examine their pain patients’ diets because this hasn’t been the usual work up for a chronic pain patient. I know that my colleagues at the pain clinic at Haukeland in Norway initially were rather sceptical, but they also began to ask their patients what they ate and the first thing they discovered was the same that I had noted: that many patients had poor diets.

Many of our patients are depressed and they don’t feel like making food; they don’t earn a lot of money, so they can’t buy everything they want to eat. And so it’s especially important, I think, that chronic pain patients have a good healthy balanced diet and there are several reasons for this: firstly, the nervous system has the capacity to dampen pain – I’m sure most people have heard of the body’s own morphine like substances called ‘endorphins’. In order to be able to function optimally, the nervous system requires specific nutrients, such as essential amino acids – there is one called ‘tryptophan’, which is very important in the body’s own pain dampening systems and tryptophan is found in chicken and sea food, turkey, avocados, bananas… There’s just a sort of an example. So on the very basic level the nervous system needs nutrients. We know that specific vitamin deficiencies can cause pain problems, for example, vitamin B12 deficiency can cause very unpleasant peripheral poly neuropathy, which is a nerve pain in the feet and also possibly in the hands. Vitamin D deficiency can cause diffuse musculoskeletal pain.

Evans: Now the media is full of claim and counter-claim of what is and what isn’t good for us. So what should we know about food before believing the headlines?

Bell: I think it’s really important that common sense is involved when considering what kind of food we should eat because we are bombarded with a jungle of misinformation and lots of weird diets and I don’t think pain patients should be on weird diets.

The World Health Organisation published a report in 2003 where they described how there’s been a huge change globally moving from predominantly plant-based foods to high energy foods and they were especially focusing on the balance between the intake of Omega 3 fatty acids and Omega 6 fatty acids. And the ideal ratio in these fatty-acids is 4:1, four times the amount of Omega 6 compared to Omega 3, but in the, for example, the average American diet today, the amount of Omega 6 is around 15-25 times the amount of Omega 3 intake.

Omega 6 fatty-acids are found in red meat, dairy products and especially in, for example, soya oil and soya oil is used to make a lot of fast foods and snacks. So I think the widespread use of soya oil has contributed to high levels of Omega 6. Omega 3 is found in fatty fish, oily fish, also in flaxseed oil, flaxseed and walnuts. That’s some examples of foodstuffs having relatively high levels of Omega 3.

And Omega 6 has to do with inflammation. We need to have a certain supply of Omega 6 because we need to be able to have inflammation in the body to heal injury, but if we get too much that can create its own problems. And Omega 3 has an anti-inflammatory effect, so one aspect with regard to diet and I think for pain patients is to ensure that one has sufficient levels of Omega 3 and that one reduces the amount of Omega 6.

Evans: We will stay with the subject of diet, because it’s so important and should be so easy to address in our lives as we try and manage our pain. Here’s Rae Bell of Haukeland University Hospital in Norway again.

Bell: There are actually a number of foodstuffs that have been demonstrated to have anti-inflammatory effects, just like non-steroidal anti-inflammatory drugs, for example, in virgin olive oil there is a substance called oliocamfole and it has been shown to have a similar effect to ibuprofen. And this is really interesting because non-steroidal anti-inflammatory drugs have a lot of adverse effects, so if we can achieve some of the same effect through a diet, that would be ideal.

Now, if we think about antioxidants – antioxidants are found in many foodstuffs and many antioxidants have anti-inflammatory effects, for example, resveratrol is an antioxidant which is formed in certain plants when they are under attack by bacteria or insects and it’s found in the skin of red grapes and I’m sure everyone will be happy to know in red wine and it has a powerful anti-inflammatory effect. Other antioxidants are found in the reddish-blue pigments in like blueberry skins and cherries. But the problem is there’s a lot of hype in the media and when you watch television, lots of advertisements saying, ‘Buy this antioxidant product.’ But actually you don’t really need a huge intake and the best way to get antioxidants is through the diet, not through pills.

And I think most people will know whether their diet is healthy or not. If we are busy, we’re on the run and we just have a little snack here and there, that’s not good enough. We need to be getting vitamins; we need to be eating fish – more fish, less red meat; lots of fresh vegetables – green leafy and brightly coloured vegetables, because it’s the colour pigments which contain the antioxidants. So if you think of a colourful Mediterranean kind of diet then you are on the right track.

Evans: So that’s what we should eat, but what should we avoid?

Bell: Specific foodstuffs can increase pain. I am working… I have some colleagues in France who are doing very good science on an area called ‘polyamines’, which is very interesting. Polyamines regulate a receptor in the nervous system which is involved in increasing pain. Oranges, orange juice contains very high levels of polyamines. That doesn’t mean that you should stop drinking orange juice, it just means you should think twice before drinking many glasses a day or huge numbers of oranges. Peanuts have quite high levels of polyamines.

Then there is the question, the whole question of coffee. For the chronic pain patient, coffee can disturb sleep, everyone knows about that, and when you have chronic pain and you can’t sleep, you sleep poorly, then you will feel the pain more strongly. If this is consumed on a regular basis it can increase risk of developing a chronic daily headache. It has interactions with analgesic drugs; it increases the effect of paracetamol and aspirin and that’s why it’s used as what we call a co-analgesic. There are some pain relieving drugs which contain caffeine, but caffeine has other attributes which are not beneficial at all, actually deleterious.

High levels of caffeine can link to osteoporosis, so if you drink more then six cups of coffee a day your risk of developing osteoporosis is increased and this is also the same for cola. I’m amazed by how much cola my patients drink and I have patients that drink regularly, every day, four litres of some kind of cola beverage and cola contains phosphoric acid, caffeine and sugar. I mean, the taste might be nice, but it has nothing positive about it otherwise and it can cause osteoporosis in the same way as drinking large amounts of coffee because it has such high caffeine levels.

Evans: That was Rae Bell of Haukeland University Hospital in Norway.

Back to our message board… and this is another question we have received: ‘I’ve just finished a 3-month course at a pain management clinic. I’ve had chronic pain for 8 years and it’s taken me all that time and a new GP to get help. For five years I was house-bound and depressed. Why don’t all GP’s know about pain management and why does it take so long to get help?’

Answering your questions today is Dr Mark Turtle, President of the Welsh Pain Society.

Turtle: Right at the beginning I would say that we must differentiate between different forms of pain measurement. Now I assume by the way the question is put, that one is referring to a cognitive behavioural-orientated pain measurement programme, rather than a sequence of treatments within the pain clinic.

Now, one of the things one has to remember is that there is a lack of knowledge, not only from society in general, but from health professionals. I’m thinking in terms of understanding about chronic pain, what the remedies are, how you manage it. It’s not taught, for example, to any great degree at medical school. Tied up with this often is that it’s not a conventional illness which people understand; it doesn’t follow the ‘medical model’ – what I mean by that is that somebody presents with a symptom, the health professional attributes it to a particular pathological disease process, applies the appropriate remedy for that condition and then expects the symptoms to disappear. The trouble with chronic pain is that it often doesn’t follow that model, either because you can’t find the cause or the treatment is worse than the cause or there is no specific treatment for that particular condition. So we’ve got a lack of understanding and inability sometimes to take the patient’s problems seriously.

There is also a lot of lack of information and maybe even disinformation, so that sometimes the GP and the people working in his practice may actually not know what is available and may have heard perhaps that, for example, the waiting list is extremely long, when in fact that may not necessarily be the case.

Now, the final problem, which is, I’m afraid very, very important and that is financial constraint. Something like 1 in 5 people in the population have a chronic pain problem, so the number of people we are talking about within the UK is extremely large. So that even if we had an ideal system, it would be difficult to apply that for all those people, so unfortunately it is likely they are going to have to be in some sort of strait somewhere in the system and the health professionals are worried that the whole system will get clogged up.

But just coming back to my original point, I believe that every GP ought to know about their local pain clinic, but that trained clinic may then make use of a pain management facility and so won’t understand why a general practitioner may not know the full details of what is contained within that pain clinic.

Evans: Mark Turtle referred there to cognitive behavioural therapy or CBT, so what is that?

Chris Main is Professor of Clinical Psychology at Keele University where he’s researching how best to develop patient-centred approaches to care, particularly with people who have lower back pain.

Chris Main: Cognitive behavioural therapy is a way of looking at the patient and the situation they are in – looking at their beliefs about pain, looking at what they are actually doing. And it’s surprising how often we are unaware of habits that we’ve developed. We are all quite capable of building up good habits and bad habits and I think that sometimes looking at this carefully, doing a bit of detective work perhaps on yourself, perhaps keeping a diary under some guidance will help you identify things you are doing that perhaps you weren’t aware of. I think, more importantly, identifying things that are in fact unhelpful, or superstitions that we have that are really not very useful.

But the role of the professional in this situation is to offer some guidance in terms of their experience of working with people that have got pain. And indeed in pain management programmes for many years we’ve built up patients’ stories of all sorts of different ways that people cope with situations. And really the whole pain management movement has been developed on the basis of real concerns, real problems that patients actually have. We’ve known for a long time that showing people how to relax is helpful, can counteract muscle spasm and, surprisingly, it can make people less tired. There are clinics in the country which are teaching things like mindfulness, which patients find helpful. Not everyone, but certainly there is a proportion of people that are helped by various types of relaxation that help them to get rid of some the stress in their bodies, because pain is a stressor.

Evans: Now, Professor Chris Main mentioned clinics that offer mindfulness. What is mindfulness? Well, one of the organisations that offer training in the area is Breathworks. They have run programmes for a wide variety of organisations, ranging from local authorities to NHS trusts. Vidyamala Burch founded the organisation in 2001 and it’s based on her own experience of living with chronic pain for the last 35 years.

Burch: I was in hospital in New Zealand in Auckland. I was very ill, had a big, sort of personal crisis and there were a few significant events in that time. One is that I had a terrible night. It was a real sort of dark night of the soul and I thought, ‘Oh my God, I just cannot get through to the morning’. And then I had this other voice that came in, that said to me very, very clearly, ‘You don’t have to get through till the morning, you just have to get through the moment.’ And my whole experience completely changed – I relaxed, I softened and I thought, ‘Well, I can do that – I can get through this moment and I can get through this moment and I can get through this moment.’

And that was such a personally significant experience that it changed my life. It completely changed my perspective on how I related to the past and how I related to the future. So rather than be caught up in all these regrets about the past or anxieties about the future, I thought, ‘Well, that’s all just in my head. The only thing that I’m ever really experiencing is just this moment and I can do more than just survive this moment, I can live this moment fully.’

Another thing that happened during that time in hospital is, they sent a chaplain to see me, I think because they didn’t quite know what to do with this young woman, who had an incurable spinal injury and it was obvious that I needed help. So the chaplain was this lovely, elder gentleman that came and sat by my bed and held my hand and he asked me to visualise a time when I’d been happy and a place when I’d been happy and so I went back to the mountains of New Zealand, where I’d done a lot of climbing in my teens. Then he brought me back to my hospital bed and that was also very significant because I felt totally different, because of what I had done with my mind. My actual experience of pain lying in a hospital bed hadn’t changed at all and yet my overall experience of myself as a human being had completely transformed by what I’d done with my mind. And I came out of the hospital realising I had this huge tool at my disposal which was my mind.

Evans: So that’s the background, but what is the central principle that Vidyamala Burch and Breathworks is teaching?

Burch: It’s awareness. We are teaching people to be aware of their experience in the moment physically, mentally and emotionally. And if you are aware of what’s happening, you can then divide it up into two different components that we call primary and secondary suffering. So in the case of my back pain, the primary suffering is the unpleasant sensations in my back and my legs and my neck and various other places as I’m sitting here.

The secondary sufferings are all the ways, if I’m not aware, that I react automatically to that primary suffering. So, physically, it will be secondary tension. So because I’ve got these unpleasant sensations, I tense against them, which makes my pain worse. I may have mental states which are unaware reactions to the pain, like catastrophising – thinking, ‘Oh my God, when is this going to end? I can’t bear it, I’ve had it for ever, it’s not fair, poor me, why me?’ – those kind of things. And the emotional secondary suffering will be things like fear, anxiety and depression.

So we accept that an individual will have all these experiences going on, that’s normal, but what we do is we encourage people to turn towards their experience, get to know it and then tease apart the primary and the secondary. Then we teach people how to accept the primary suffering, to accept the unpleasant sensations that are unavoidable if you are living with chronic pain, but not to accept the secondary suffering. We teach people how to reduce or even overcome the secondary suffering, which is the fear and the anxiety, the catastrophizing, the secondary tension and so on.

What we do on our courses, is on the first week we are very welcoming, we’re very kind and then we get everyone to lie down, those people that can, we get them to lie down. We pay attention to the comfort and we go, ‘Have you got the right height of pillow? Is it just right? Would you like a blanket? Would you like an eye bag? Would you like something under your knees to support your lower back?’ etc., etc. And then we will lead a body scan which is this way of going through the body and just very, very gently, very, very gradually, inviting awareness inside the body. And at the end of that people have had an experience of accepting their pain because for most people, actually, it’s such a relief to stop fighting. It’s so exhausting running away from yourself all the time.

Evans: Vidyamala Burch of Breathworks.

And mindfulness is something that might be relevant to the last of today’s questioners on our message board. ‘I’ve been living with back pain for the past 10 years and I normally use relaxation to manage it. However, I find dental treatment very stressful and the pain of having fillings makes it absolutely impossible to relax and makes my pain a lot worse. What can you suggest I do?’ Dr Mark Turtle.

Turtle: The first thing to say is that, ‘well done’, you’ve obviously worked out ways of managing your problem, you’ve accepted that there is a difficulty which isn’t going to evaporate and you’ve demonstrated that there are strategies, which you can employ to turn your situation into one that is tolerable. And I’m sure that you can find some help to expand the value of what you are doing to enable you to experience this rather stressful situation.

And the first thing that we must remember is that you are not particularly unique. It is well recognised that people find going to visit the dentist a stressful experience and yet without necessarily having a logical explanation. The first thing I would suggest is that you try and find somebody to give you a little bit of help in talking it through – so a counsellor, particularly a psychologist, who understands about these things, because planning in advance is the key to it really. It’s working out what you’re going to do when you get in that situation, because if subconsciously you have in the back of your mind a fear that you are going to lose control in that situation, it almost is guaranteeing you will do. Whereas if you feel that you have some strategies up your sleeve, you’re some way towards being able to cope with that situation.

Some people will find alternative practitioners able to give them this sort of advice. If none of this really gets you anywhere, then it may be appropriate to go and see your doctor and it may be considered acceptable and appropriate to be given a sedative to take beforehand. If this is the case, of course, you would want to involve your dental practitioner as well, so that everybody knew what was happening.

Evans: Dr Mark Turtle. And don’t forget that Airing Pain is here to help you, so if you would like to put a question to our panel of experts, then please do via Pain Concern’s message board, email or good old-fashioned pen and paper. And you can download or subscribe to all the previous editions of Airing Pain from ableradio.com/podcasts/airing-pain. And finally, I leave you with some sound advice from Rae Bell.

Bell: Pain patients should be increasing the amount of Omega 3, reducing the amount of Omega 6, thinking of eating a colourful meal with fresh fruit and vegetables, cutting out cola, reducing the amount of coffee. Don’t drink coffee with caffeine in it after 12 in the middle of the day if you have sleep problems. People need to think carefully about what they are eating – not only the contents of what they’re eating, but how many times a day they eat. I have a number of pain patients who perhaps only eat once or twice a day and if you have a tension headache that can be triggered or exacerbated by irregular eating, too-long intervals between meals. So we recommend that our patients eat three main meals and two light meals between the main meals, so that you are eating regularly through the day.

Contributors:

Rae Frances Bell, Head of Multidisciplinary Clinic, Haukland University Hospital
Vidyamala Burch, Founder of Breathworks
Ron Parsons, Patient
Chris Main, Professor of Clinical Psychology, Keele University
Dr Mark Turtle, Consultant Anaesthetist and Pain Specialist.

How diet can help manage pain, the benefits of mindfulness, CBT and exercise, and a Q&A with pain specialist Mark Turtle

In this programme Airing Pain looks at a range of lifestyle changes and psychological approaches we can use to help with managing pain. Dr Rae Bell tells us how a good diet can help in managing pain, telling us about foods which are natural painkillers and why we should perhaps give cola a miss. Ron Parsons describes the exercise routine which has helped him to manage his lower back pain.

Contributors:

Rae Frances Bell, Head of Multidisciplinary Clinic, Haukland University Hospital
Vidyamala Burch, Founder of Breathworks
Ron Parsons, Patient
Chris Main, Professor of Clinical Psychology, Keele University
Dr Mark Turtle, Consultant Anaesthetist and Pain Specialist.

The hidden problem of pain in children and young people, plus tributes to Pain Concern patron Claire Rayner

To listen to this programme, please click here.

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Chronic pain is as widespread in children and young people as in the population as a whole, but is probably even less well understood. Jan Barton and her son Sam, who grew up in constant pain, discuss their struggle to get a proper diagnosis and to find effective treatment, while, Dr Christina Liossi explains how hypnosis can be particularly valuable as an approach to managing pain for children. Dr Amanda Williams describes the psychologist’s role in helping patients manage their pain and Dr Tonya Palermo explains how a psychologist can explain pain to young people.

We also pay tribute to the late Claire Rayner, indefatigable campaigner for patients’ rights and patron of Pain Concern, who died October 12, 2010, aged 79.

Issues covered in this programme include: Children and young people, vascular lesion, misunderstanding, misdiagnosis, depression, side-effects, hallucination, family, psychology, exercise, school, hypnotherapy, communication and leg pain.

Lionel Kelloway: Hello and welcome to Airing Pain, a programme brought to you by Pain Concern, a UK charity that provides information and support for those who live with pain. Pain concern was awarded first prize in the 2009 Napp awards in chronic pain, and with additional funding from the Big Lottery’s funds awards for all programme and the Voluntary Action Funds community chest, this has enabled us to make these programmes.

I’m Lionel Kelloway and in today’s programme:

Sam Barton: I was told, this is how you’re going to be, you’re going to have to put up with this for the rest of your life and that was a destroying moment for me.

Christina Liossi: Chronic pain is actually quite common in children and adolescents, with prevalence rates that mimic adult prevalence rates.

Tonya Palermo: The main factors that I have found that predict how good somebody will be is their dedication and commitment to learn hypnosis and how motivated they are.

S Barton: I got to the point where I even said, ‘Look, amputate my leg. If it’s gonna help, just take the leg off.’ You know, I’d rather have lost the leg than continue.

Kelloway: More on those stories coming up. But first we at Pain Concern want to pay tribute to our patron, Claire Rayner, who died recently. Many words have been said since her passing and I think the best tribute we could pay is to hear the advice she gave to Airing Pain listeners earlier in the year. You’ll also hear the words of Pain Concern’s chairman Heather Wallace and Martin Johnson, who chairs the Royal College of General Practitioners pain management group.

Claire Rayner: One summer night I’d gone to bed early and was lying in bed stretched out starkers, reading, glasses on the end of my nose, and my husband comes in, he stands beside the bed and he says, ‘Look at you,’ he said, ‘you’ve got artificial shoulders, artificial knees, you’ve got hearing aids, you’ve got a pacemaker, you’ve got glasses – I don’t know whether to plug in or switch off!’

Heather Wallace: Claire Rayner was an inspiration – she challenged the view that nothing could be done about pain and suffering. She also championed the rights of older people and the notion that pain was an inevitable part of aging. She herself endured considerable illness and pain – she didn’t let her disabilities hold her back.

Rayner: This arm, it’s alright, but I’ve learnt not to try and lift myself up with it. I’ve learnt not to stretch with it – tricky because it’s my right arm, but there you go. And I shake hands when I meet people – I put up my left hand to say, ‘Hello, it’s lovely to see you.’ And they’re a bit startled at first and I say, ‘Sorry, the other one’s a bum! [Laughter] and there you go.

Just be cheerful about it. I’m deaf as a post. When I meet people I say, ‘You’ll have to speak up love, I’m a bit mutton.’ You know the term ‘Mutt and Jeff’? Good old cockney, you know, Mutt and Jeff, I’m a bit mutton.

You’ve got to be brave and upfront. Do remember that once you’re an old grown up person, you don’t have to be polite and good anymore – you are allowed to be selfish, if that’s what you think it is. I don’t think it’s selfish, I think it’s common sense to look after yourself. But you’re allowed to ask for what you want, you’re allowed to say, ‘Please help me.’ There’s no loss of face in that, I do it all the time.

Martin Johnson: Claire Rayner was the most dedicated peoples’ champion that I’ve ever met. Even throughout her illnesses over the last few years, she’s been so dedicated to doing work for patients. It was a privilege to work with her. I am a trustee of the Patients’ Association, she’s spearheaded the National Patients’ Association for many, many years, and I can’t think of anybody that has done more for patients’ rights than Claire.

Wallace: She wanted people to learn about pain and about pain management, so that they too could manage their condition and get on with their lives and get the most out of their lives. She was an empowering woman and we will miss her greatly, we will miss her voice, her energy and her influence on health policy.

Rayner: You deal with pain by… you have to be rational about it: is there anything you can do to get rid of it? Yes – do it. Is there anything you can do to get rid of it completely? No – okay, bad luck, live with it. And that’s what you have to do, you learn, I learned, not to think about it, not to focus on it. When I find I have a pain that bothers me more me one knee I will start flicking my fingers, even as I’m watching television, because that makes me shift focus of attention from the achy bit to a bit that isn’t aching. And that works quite well. I don’t do it… if I do it in the cinema people might notice, but even there if something hurts I might flex my toes, because that shifts my physical attention to another part of my body.

One of the best things you can do is get in touch with the specific [support] group, they’re all there, use them, and then just get on with living your life. And if you’ve been dealt a bum hand, well you can turn it into something good.

Kelloway: The much missed, inspirational Claire Raynor, who amongst many roles was patron of Pain Concern. I’m Lionel Kelloway and you’re listening to Airing Pain…

Sam Barton: I was about eleven years old. I noticed I had two distinct lumps on my calf. Within a couple of months of noticing this I started getting pain symptoms in my calf and within another couple of months I was in absolute agony. After that we obviously went through the whole palaver of meeting doctors, surgeons, trying to work out what it is, going for scans. The original decision, I think, was they thought they were lipomas. They operated and found that obviously what they were operating on was not lipoma at all and the operation subsequently had the effect of increasing the amount of pain I was in.

Jan Barton: The lesion in Sam’s leg, which was an abnormal vascular lesion, was putting pressure on the nerves in his leg and there was no cure at that time. And he was in agony when he was young, he described it as like someone poured petrol down the back of my leg and set it on fire and I think that set the scene for the next ten years.

Kelloway: That’s Jan Barton and her son Sam, who’s story we’ll be following throughout the programme.

J Barton: One of the biggest problems, and often if you talk to people that suffer pain, chronic pain, is being believed in the first place. When Sam first became ill he was misdiagnosed, what Sam had wrong with his leg is very rare, so I can forgive people not getting it right, but I can’t forgive them not understanding how much pain he was in. And they said he had lipomas in his leg and these shouldn’t be giving pain. And they… people would say things like, ‘Is he happy in school?’ That was a good one…

S Barton: Yeah, I do remember one particular doctor actually suggesting, ‘Do you perhaps think this is all in Sam’s head?’ And I found this all extremely distressing, due to the amount of pain I was in, that someone was essentially saying, ‘Is he happy in school? Perhaps, is he making this up?’, you know, and even if it was, for example, it doesn’t change the fact that it was still painful.

J Barton: Once he had a proper diagnosis, once he saw the right people and they did the right scans and they diagnosed what was wrong with him and they could see what was causing the problem, then, obviously then he was believed. But I think for many people that are in chronic pain not being believed is one of the hardest things.

Kelloway: Sam Barton’s story is of course unique to him, but there are issues and experiences that affect all of us who live with pain. On Airing Pain we want to be led by you and several listeners have contacted us with comments and questions that also have relevance to Sam’s story. In the last edition we look as the complex subject of neuropathic pain and one listener, who responded to that programme on our Facebook page, the writer says, ‘I have neuropathic pain, so the programme was especially useful’, then goes on to say, ‘I had two hernia repairs between the ages of three and five and when I was 38 I developed neuropathic pain in my groin.’

Another correspondent writes, via our message-board, ‘My husband lives with chronic pain, and his doctors are not giving him, or me , any psychological help with dealing with the effects of the pain. When I suggested to my husband that he might be depressed and could maybe benefit from some pain management, he says there’s nothing they can do for him and he has his own ways of dealing with it. I now feel that we can’t discuss any of this without getting upset of arguing, which makes his pain worse, and makes me feel worse.

A few months ago I went to see the counsellor at my local carers association, but I felt I didn’t get on well with the counsellor and I don’t want to see her again. Where else can I get support for myself and how else can I support my husband?’

Well you’ll hear a lot about this subject, not just in this programme, but in future editions of Airing Pain. Addressing this questioner today is Amanda Williams, who is a consultant clinical psychologist in the pain management centre of the National Hospital for Neurology and Neurosurgery in London.

Amanda Williams: This is really rather moving and actually very typical of what happens, that pain doesn’t just affect the person with pain, that is affects those who are close to them and care about them. It’s not uncommon for people with chronic pain to feel that they’re managing well, because it sounds, when one suggests the pain clinic or help with pain management, as if one is saying they’re coping badly, or they’re not, you know, in some ways they’re weak or they’re failing.

But pain is incredibly difficult to deal with and while her husband may be right, that there’s nothing that can be done and his own ways of dealing with this are the best, it’s pretty unlikely and there’s usually something to be learned from discussing this with specialists of pain clinics. And also very often with other patients who are at pain clinics, because many of these things take place in group settings where people learn from one another and offer one another ways of understanding pain that then all can benefit from.

But probably, if her husband did go to a pain clinic, then her involvement in helping him work on new ways of doing things, experimenting with different ways of doing things, would be best, so she can actually be a really effective asset for him in trying to do things differently. And many pain clinics really welcome husbands and wives and other, you know, close relations who are keen to help and support.

J Barton: People underestimate the effect it will have on a family group – it doesn’t just affect the person that’s in chronic pain, it affects the siblings, it affects the parents… When Sam was first on the medication and he was about 13, when we’d come back from London and been told, ‘Well there you go guys – he’s on the meds, off you go, get on with it.’ Yeah? Unfortunately, the combination of the drugs, we hadn’t realised that Sam was starting to hallucinate and see things.

So it all came to a head one morning when Sam and his little brother were sitting upstairs in bed and Sam was seeing things and he started screaming and he was having florid visual hallucinations. And unfortunately his little brother was sitting next to him when it happened and he was quite traumatised by this and the fact that then Sam was seeing things walking round the house. We’d go to sit on a chair and Sam would say, ‘Don’t sit there because, there’s… Marvin’s there.’ The way Sam dealt with it was that he invented a goodie [S Barton: Yeah.] called Marvin. Now Marvin would chase away all the bad shadow people, weren’t they shadow people?

S Barton: Yeah, I mean at the age of 13, you know, when you start seeing shadows step out of the wall… I mean it was really bizarre, it was really strange and it was really scary at the same time.

J Barton: However his little brother had even less insight as he was only ten and was absolutely traumatised by all of this and as an example of how it then affected the family group, for six months afterwards he would not go anywhere in the house on his own. So we had some help from an organisation in Swansea called the Tristan Lewis Trust and they had a play therapist who started to see Robert and did the trick – after a while he did recover from the experience, but it took a good six months before he got over that at the age of ten.

Kelloway: This is Airing Pain, with me Lionel Kelloway. Another questioner to our message-board has touched on issues raised in this programme. But before we continue, please bear in mind that whilst we believe the information and opinions on Airing Pain are accurate, based on the best judgements available, you should always consult your health professional on any matter relating to your health and wellbeing. He or she is the only person who knows you and your circumstances and therefore the appropriate action to take on your behalf.

Now back to that question: ‘How can a psychologist help with pain management?’ Addressing your questions today is Consultant Clinical Psychologist Amanda Williams.

Williams: Well pain is very stressful, as several others have pointed out on your programme, and there are many problems that having pain causes somebody. So psychologists try to help address those. Some of the problems are outside the individual’s control, but there are still ways that people can protect themselves from things that are outside their control. But others have possibilities of control, for instance, we all have habits in the way we think and the way we react emotionally to problems and we characteristically do things in certain ways and that feels normal and usual and sensible and so on. And that works for most problems in our lives, and then certain problems, like pain, can challenge those because they don’t give way as problems to those kind of solutions that we’re used to using.

So a psychologist will try to help look at things from a broader perspective and discuss different ways of thinking about problems, different ways of reacting emotionally to them and different ways of handling them. Then those possible solutions are tried out and discussed. A psychologist really tries to work with people in a joint way, so it’s a shared journey of exploration, finding out more about what works for the person with the problems in their particular circumstances. There aren’t any answers that work for everybody but psychology is enough of a science that there’s some things that we can be fairly sure about.

Kelloway: Amanda Williams there.

So, bearing in mind Sam’s story, what is the psychologist’s role in a case involving a child or adolescent? Tonya Palermo is a paediatric psychologist and associate professor at Oregon Health and Science University in America.

Tonya Palermo: Chronic pain is actually quite common in children and adolescents and in large community-based studies there have been findings of 20-40 per cent of youth having some pain that persists over a three-month period. And among those youth those that have severe and disabling pain is approximately 5-10 per cent, which is almost exactly the same as the adult population.

Typically when we see youths for psychological treatment for chronic pain we develop some shared goals and those are around functional goals for the child. These may involve aspects of physical activities that they are no longer able to perform that they want to get back to, such as being on the basketball team again; these may be very practical, routine life activities, such as participating in chores around the house again; or these may be mandatory type goals, such as requiring some type of school attendance or participation.

And so we typically encourage youths to come up with a variety of goals that are beyond pain relief, because the focus on only pain relief can sometimes be counter therapeutic, because youth may not see the value in engaging in a variety of other activities, but want to focus instead just on controlling their pain – and we know that those approaches don’t work as well.

S Barton: My goals were basically, I just wanted to work, wanted to get a job, wanted to be normal, go out drinking, doing everything that, you know, a normal 16, 17 year old would be doing. But it was almost living a sort of double life in a way, because when I was in a sort of remission, you know, when the leg wasn’t hurting too bad, maybe for a couple of weeks, I’d be able to go out, go down the pub, hang out with my friends and then I would end up in absolute agony again, so I would kind of disappear off the scene completely, because I wouldn’t obviously be able to go out, wouldn’t be able to do what I wanted to do.

And I’d find it very difficult with work – because I was desperate to work – and I find it very difficult with employers, you know, to explain to them, ‘Look, you know, this is why I’ve been off work today.’ They knew, obviously, I had a problem, they would try and do their best to help me out and provide me with some work and I just got sick of letting them down all the time really, so I think that was the point where I decided that it would probably be best to apply for disability living allowance and income support.

Palermo: The way we typically explain to children and adolescents that activity participation may lead to pain reduction is that the temporal ordering of that, is that once you participate in activities, that that alone, both the routine involvement of that as well as showing yourself and feeling more confident in your abilities to do important things in your life, that that often leads to pain reduction. And so sometimes we don’t need to think about a specific strategy to control pain, but we just need to instead focus on how to get back into important life activities and that that involvement will often lead to a decrease in pain.

Kelloway: Paediatric Psychologist Tonya Palermo and Sam Barton. I’m Lionel Kelloway and you’re listening to Airing Pain.

One of the routes offered to Sam Barton was to undergo a three week residential pain management programme at the Bath Pain Clinic. His mother was also encouraged to attend with him, but how did her rather cynical and battle-worn teenager and his mum, get on?

S Barton: They did all this stuff, like, you know, guided meditation, which is just a load of… I don’t really [laugh] believe in that kind of stuff, if you see what I mean. But it was very helpful being in a situation with people, obviously who are experiencing the experiences that I was going through at the time, you know, and it was a… sort of lifted me up a bit, you know?

They were trying to work us into a better routine, obviously. I was very sleep inverted, so I was not sleeping in the night, sleeping through the day, you know, which was the same as everybody else who was there, really, you know. And it was just a case of making us get up in the morning, making us do some exercise, whether it was painful or not, you know.

J Barton: I think being on the residential course in the pain clinic at Bath with Sam was really helpful, because I was able to speak to other parents in a similar situation. I would be able (to be) taught ways to manage this. When you do a course like that they ask you what is your aim from the course and mine was just to try and find a way to help Samuel, I think that was my goal. I didn’t actually believe when I went on it that we could, so that’s another thing I guess I gained from it, that we did find ways of helping him and it’s simply being with other people and working together and being taught ways to manage it – it was very helpful.

Kelloway: Jan and Sam Barton there. And Airing Pain will be visiting the Bath Pain Clinic in a future edition. Another tool in the psychologist’s toolbox is hypnosis. And there is evidence to show that it can be particularly effective for children undergoing painful medical procedures. Research into its efficacy is being carried out by Christina Liossi, who is a senior lecturer in health psychology at the University of Southhampton and a clinical psychologist at Great Ormond Street’s chronic pain clinic.

Christina Liossi: One of the benefits of hypnosis is that children can learn hypnosis very easily, it doesn’t have any side effects and also techniques such as hypnosis can be generalised to other distressing situations the children find themselves into. So, for example, when I was working in oncology we were teaching children to use hypnosis for pain management for lumber punctures or veni punctures. But then they could use exactly the same skills for nausea and vomiting management, for insomnia, for other distressing symptoms that they had because of cancer.

I am using hypnosis for my chronic pain patients and I have found it equally effective as in the acute pain setting. Although, I have to say that there are differences between acute and chronic pain, so it’s not exactly the same situation.

The results have been very encouraging and very good in the adult population as well. For example, it has been used for woman with breast cancer that they have to undergo biopsies, for people that have to undergo bone marrow transplantation. But there is a small percentage of people that have low hypnotic ability, but even these people, even if they don’t get the full benefit of hypnosis they get some benefit from the relaxation that accompanies hypnosis.

I think, that one of the things that really has stuck into my mind, was a five-year-old boy that I had taught him hypnosis, he had his lumbar puncture without any other medication just with local anaesthetic plus hypnosis, he was very happy about it. And then when I went back to the hospital a week later, I found out, that he himself had taught another little boy how to use hypnosis, because he was going to go for a procedure this other boy and was very scared. So he had taught him how to hypnotise himself – and the other boy went in to the treatment room, had the procedure and was very calm and very confident and there were no problems.

And, of course, you know, the parents were talking about it, and they said, ‘What’s going on? Who is this little boy who is teaching my son hypnosis?’ That shows that hypnosis is something that can be beneficial and also easily taught even by a five-year-old to another seven-year-old.

Kelloway: That’s Christina Liossi. You are listening to Airing Pain with me, Lionel Kelloway. So, back to Sam Barton’s story, here’s his mum, Jan:

J Barton: We had a few quite unpleasant years between about the age of eighteen and twenty one when it was difficult to for him to work, he was in pain again. So he had two options he was facing: do something or live like this for the rest of your life.

Doing something was risky, there was a big risk of making things even worse, if that were possible. So he was referred for what they call, a treatment called… which is a sclerosing treatment, which is a bit like what they do to varicose veins but a bit more sophisticated than that. And they inject the lesion, the vascular lesion, with the fluid with the idea to shrink it, and that’s what they did.

The first treatment went okay, the second treatment was okay at the time, but he came back, and he was… and then blue-lighted into Morriston [Hospital, Swansea] a day later and he was in absolute agony. I have never ever got over that, ever got over… watching… listening to that. Will never get over, watching him screaming in agony, ‘Please kill me.’ I don’t think I’ll ever get over that.

S Barton: Punching myself on my head, trying to knock myself out.

J Barton: Oh, I didn’t know what you were doing [laughter]. It was just one of the most appalling things I’ve ever witnessed. [S Barton: It was really, really painful.] And that’s after working for seven years in intensive care.

S Barton: So it was one of those moments where you’re in so much pain when you, literally, it’s like you’ve switched off, you go inside your own head. And it’s like nothing outside yourself is happening because of what’s happening to you at the time. I have never ever felt anything like that before in my life.

J Barton: What did you say? It felt like somebody had stuck a blender in his leg, back of his leg and turned it on.

Palermo: Adolescence is a time of change in many areas for youth – both their cognitive development, their physical development and social relationships change dramatically. This can have impact on how parents and youth interact. And when you put that in the context of any chronic health condition, such as having chronic pain, there may be difficulties in how youth and their parents communicate about the child’s pain and their management decisions. We have seen this in ways that we try to encourage parents to consider the level of decision-making power they give the adolescent. Because often this is very motivating when a young person is given their appropriate decision making capacity again instead of having the parents make decisions for them.

J Barton: We went to London and the surgeon we saw was excellent and said that he thought it probably wouldn’t make things worse – there was a 10% chance that he might have some improvement and there was a chance that he could have a lot, a big improvement. And Sam, he decided to take the risk, didn’t you Sam?

S Barton: If I didn’t have the surgery and I’d continued down the road that I was going, to be honest, I was probably going to end up drinking myself to death or doing myself a nasty, if you see what I mean, you know? And I got to the point where I even said, ‘Look, amputate the leg, if it’s gonna help, just take the leg off’, you know?

J Barton: We actually asked the surgeon…

S Barton: I really got…I didn’t care, you know, I’d rather have lost the leg than continue. After years of being told, you know, ‘Well one day this is going to get better. We’ll find something to do about this.’ I was told, ‘This is it now – this is how you’re going to be, you’re going to have to put up with this for the rest of your life.’ And that was a destroying moment for me.

Kelloway: A destroying moment indeed. And Sam’s decision to undergo life threatening surgery?

J Barton: It all went extremely well. They removed part of the lesion, he didn’t bleed to death on the table. Which was always a plus, wasn’t it Sam?

S Barton: Yeah, yeah…

J Barton: And they were able to move some cysts inside the nerve sheath in his leg.

S Barton: And it doesn’t hurt, I have no pain, which is miraculous really. I am completely pain free, you know, I was not even expecting that before I went in for the surgery, you know. If anything, I didn’t go into the surgery confident that I was going to be better afterwards. I thought I it might be a bit better, maybe it might be the same, but it’s worth trying it and this is brilliant, yeah – this is fantastic. Before I would not be able to walk, maybe even like a quarter of a mile without ending up in absolute agony for days and days on end and yesterday I walked for about three and a half miles with the dog [laugh], and obviously I’ve got a job and I’m going to work later on.

I can live a normal life without actually trying to live a normal life. I can go mountain biking, I can go surfing, I can start skating again, which means a huge amount to me, I mean it’s essentially saved my life, you know, in more than one way.

Kelloway: Our thanks to Sam and Jan Barton for sharing that very moving story with us.

And don’t forget that Airing Pain is here to help you, so if you’d like to put a question to our panel of experts, or just make a comment about the programme then please do via our blog, message board, email, Facebook, Twitter.

All this information is on our website, www.painconcern.org.uk. It’s a one stop resource to get further information about this programme, including a glossary of medical terms used, and to download this and previous editions of Airing Pain along with a host of information on how to manage your pain.

In the next programme we will be exploring the subject of nutrition, weight control for those with lower back pain and mindfulness. But for now, I’ll leave you with some personal advice from Jan and Sam Barton.

J Barton: A lot of people find it particularly helpful to try and make contact with other people in a similar situation, via organisations like Contact a Family or the various pain charities. I think it’s quite useful to be able to contact and talk to other people and find what is out there in the way of advice.

Be careful what you read on the internet – don’t believe everything you read online. However, there is useful information out there, and there is good, reliable, safe information out there, but do be careful that you don’t believe in everything you read on the internet – just look for the help that’s out there and don’t give up.

S Barton: I would say to people that, no matter how hard it gets, just to keep going, keep pushing on and don’t let it get you too down. No matter how hard it gets, and you will have those moments, where you hit rock bottom and you think nothing can ever go right, you know, and that this is it, game over. No matter how hard it gets, everything you do in your life, everything you say, everyone you meet – it defines who you are. It builds the character that you become and going through something as hard as I have been through, it has really turned me into quite a good person, you know. I’ve got a fairly strong character, I’ve got a fairly strong drive to continue my life and even if I was still in pain, still everything I was doing would still be defining who I am. So don’t give up and just remember that you are a stronger person than most people would be.

Contributors:

Heather Wallace, Chair of Pain Concern
Dr Martin Johnson, Chair, the Royal College of General Practitioners’ pain management group
Amanda Williams, Consultant Clinical Psychologist, University College London
Claire Rayner, Patron of Pain Concern
Sam Barton
Jan Barton
Dr Tonya Palermo, Paediatric Psychologist and Associate Professor, Oregon Health and Science University
Dr Christina Liossi, Senior Lecturer in Health Psychology, University of Southampton and Clinical Psychologist, Great Ormond Street chronic pain clinic.

The hidden problem of pain in children and young people, plus tributes to Pain Concern patron Claire Rayner

We also pay tribute to the late Claire Rayner, indefatigable campaigner for patients’ rights and patron of Pain Concern, who died October 12th aged 79.

Contributors:

Heather Wallace, Chair of Pain Concern
Dr Martin Johnson, Chair, the Royal College of General Practitioners’ pain management group
Claire Rayner, Patron of Pain Concern
Sam Barton, Growing Up in Pain
Jan Barton, Growing Up in Pain
Dr Tonya Palermo, Paediatric Psychologist and Associate Professor, Oregon Health and Science University
Dr Christina Liossi, Senior Lecturer in Health Psychology, University of Southampton and Clinical Psychologist, Great Ormond Street chronic pain clinic.

How problems with the nervous system can give rise to chronic pain, a personal success story of pain management and a Q&A with pain specialist Dr Mark Turtle

To listen to this programme, please click here.

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Elizabeth Carrigan of the Australian Pain Management Association talks about how pain management techniques helped her come to terms with chronic neuropathic pain after spinal injury. We speak to experts on neuropathic pain about how nerve damage can lead to prolonged pain and the drug treatments available, including amitriptyline, anti-epileptic drugs and the more controversial opioids. We also take a look at the issue of chronic pain after nerves are damaged in surgery or chemotherapy.

Also in the programme: Dr Mark Turtle is in the chair for our Q&A session providing answers to your questions about living with and managing pain.

Issues covered in this programme include: Activity, amitriptyline, analgesic, anti-epileptic, anti-inflammatory, cancer pain, capsaicin cream, CBT/cognitive behavioural therapy, chemotherapy-induced pain, chickenpox, codeine, diabetes, drug, exercise, gabapentin, herpes, hypersensitivity, irritation, joint, medication, morphine, nerve damage, nervous system, neuropathic pain, opioids, post-herpetic neuralgia, post-surgical pain, pregabalin, prescription, psychology, rash, relaxation, shingles, side-effect, spinal injury, stretching, TENS, tricyclic antidepressant, Velcade and Versatis.

Rachel Yorke: Hello and welcome to Airing Pain, a programme brought to you by Pain Concern. We’re a UK charity that provides information and support for those who live with pain. We won first prize in the 2009 NAPP Awards in Chronic Pain, which has enabled us to make this series of programmes. We also have additional funding from the Big Lottery Fund’s Awards For All programme and the Voluntary Action Fund community chest.

Dr Beverley Collett: There are 7.8 million people in the UK with chronic pain – that means one person in every four households has chronic pain.

Dr Sherrill Snelgrove: There are reports from patients that they are not understood very often and that they feel they are given a low priority in the health services.

Kiera Jones: I’ve been through the whole rigmarole of doctors, specialists, MRI scans, x-rays, ultrasound scans – the lot.

Yorke: I’m Rachel Yorke and I’ve been in chronic pain for six years. Each fortnight, Airing Pain will look at the topics that affect us: the coping mechanisms, medical interventions and therapies that might help us to regain control of our lives.

Dr David Laird: On a good day we want to do things – we want to achieve things – and that means that we overreach, we’re overactive, and we want to live our lives without the pain interfering. And that’s part of the whole aspect of the loss that pain induces.

Yorke: But look, the programme isn’t just for those who have chronic pain. It’s for our family members, friends, supporters and carers, and also for health professionals who wish to have a better understanding, and share the views and strategies of colleagues and patients.

Dr Steve Allen: More and more we’re beginning to understand what goes wrong with people who have pain and more and more we can do something to fix that.

Yorke: But first a word of caution – that whilst we believe the information and opinions on Airing Pain are accurate and based on the best judgements available, you should always consult your health professional, who’s the only person who knows you and your circumstances, and therefore the appropriate action to take on your behalf.

Now, in the last edition of Airing Pain, Lionel Kelleway outlined some of the basics of pain. Don’t forget that you can still download that programme from www.ableradio.com, or obtain copies from Pain Concern. I’ll give you details on how to contact us later in the programme. Earlier in the month Pain Concern were fortunate to receive a visit from Elizabeth Carrigan. She’s founder and secretary of the Australian Pain Management Association. She was diagnosed with chronic pain in 2008 following a spinal injury and the subsequent operations to try and repair the damage.

Elizabeth Carrigan: While I was recovering from those operations, the pain wasn’t improving. I was having physiotherapy and rehabilitations and those sorts of things. And it was the physiotherapist that said to me, ‘Look, there could be nerve damage which is really causing you ongoing pain.’ And she referred me back to the surgeon, who then referred me on to a pain specialist.

When I did, I got the appropriate medication which really took away the pain, maybe 30-40 per cent. So I wasn’t great, but it was a lot better than it had been. One of the other things that he recommended that I could do if I wanted was to attend a pain management programme, so I did. And that was when things changed around for me. So, it was learning about self-management principles; it was learning about the nature of persistent pain; and it was then applying that pain management regime on a day-to-day basis. So I couldn’t let up, I had to do those things daily and I still have to, so it’s still a daily management process for me.

Yorke: We’ll be following Elizabeth Carrigan’s progress throughout the programme. But let’s explore in a little more depth the point she raised about understanding the nature of persistent pain, particularly the type of pain that affects her and countless others: neuropathic pain.

Dr Steve Allen: Neuropathic pain is nerve damage pain, things like shingles pain, diabetic pain; it’s a whole wide range of things.

Blair Smith: Other types of pain are caused by damage in the tissues – the bone or the skin or the joint. In neuropathic pain, there are abnormal signals being sent through the nervous system up to the brain and it causes a particularly unpleasant sensation which is there all of the time.

Lionel Kelleway: The best way I can describe it is that it’s like having my hand in a big pan of boiling water and just being unable to take it out.

Jan Barton: It felt like somebody had stuck a blender in the back of his leg and turned it on.

Yorke: Speaking there were Jan Barton, mother of Sam whose story you’ll be hearing in the future; broadcaster Lionel Kelleway; Blair Smith, who is professor of Primary Care Medicine at the University of Aberdeen; and Dr Steve Allen, a consultant in chronic pain management at the Royal Berkshire Hospital in Reading.

I’m Rachel Yorke bringing you this edition of Airing Pain. In these programmes, we’ll be focusing on topics and questions that you’ve raised with us. Dr Steve Allen mentioned shingles in connection with neuropathic pain and that’s a recurring topic. One questioner has asked: ‘Ten weeks ago I developed shingles. Although the rash has gone, I’m still in quite a lot of pain. How long will it last and what can I do?’ We phoned consultant anaesthetist and pain specialist Dr Mark Turtle on your behalf.

Mark Turtle: The pain that you’re experiencing is normally referred to as post-herpetic neuralgia. Herpes is the virus which causes shingles – it’s actually related to the virus which causes chickenpox. That’s thought to be a recrudescence – that is the virus that has lain dormant in the body after an attack of chickenpox suddenly releases itself. What we think happens is that the virus breaks out and you experience a rash, but the virus has a tendency to attach itself to the local nerves, and that’s the reason why the rash is localised to a particular part of the body.

Initially, the pain – which sometimes precedes the rash – will be related to the acute activity of the virus. But as that virus calms down again, pain continues and one presumes that that is because the nerve itself has been damaged. And so, the patient then experiences a pain due to nerve damage, which is a type of neuropathic pain. Now, the number of people experiencing this post-herpetic neuralgia declines quite sharply with time over the first six to eight weeks and thereafter that improvement becomes very, very slow. So I’m afraid I’ve got to give a very nebulous answer as to how long it will be, but there’s a jolly good chance at this stage that we’re going to have a problem that could last for many months.

Now, the management – well, it’s important to go and see your doctor about this and depending on his knowledge or interests, he may need to refer you on to somebody. But just very briefly, simple painkillers – paracetamol, anti-inflammatory drugs or opiate drugs – can be quite helpful; local stimulation techniques such as a TENS machine or a local massage can be quite helpful; there is a specific type of cream called ‘capsaicin cream’ which can be very useful – it actually is absorbed into the skin and the nerve cells and passes back along them to the spinal cord, where it’s said to have an inhibitory effect, but in the meantime it can cause a little irritation. If the person is experiencing a great deal of sensitivity on the skin, there is a patch called ‘Versatis’, which contains lignocaine, which is believed to absorb in the skin and counter some of the hypersensitivity of the nerves.

There is possibly a place for local anaesthetic nerve blocks, which temporarily reduce sensitivity, and blocking of particular sorts of nerves called sympathetic nerves. This is quite a specialist procedure, although very easily done by somebody who understands it and does them regularly. It’s quite controversial, but there is some evidence to suggest that if these are done within the first few months, they can be quite effective.

There’s another group of drugs which can be very effective. Firstly, we have the tricyclic antidepressants, such as amitriptyline, which can be very effective on this type of neuropathic pain and the second group is the antiepileptic analgesics. Two commonly used examples are gabapentin and pregabalin. These are particularly useful if there is a lot of hypersensitivity or if there’s lightning momentary shooting pains. Finally, if the drug therapy hasn’t really proved to be of any value, we really look at toleration of the situation and this involves a cognitive behavioural-based pain management programme.

Yorke: That’s Dr Mark Turtle answering your questions about shingles. And don’t forget that medical advice specific to you can only be given by your own GP or health professional. You’re listening to Airing Pain, with me, Rachel Yorke and we’re talking about neuropathic pain. Dr Mike Serpell is a consultant in Pain Medicine at the Western General Infirmary in Glasgow.

Dr Mike Serpell: Neuropathic pain, by definition, is pain that’s caused by damage to the sensory nervous system. So that could be a peripheral nerve injury – such as a laceration at the wrist cutting the median nerve – or it might be something more proximal, what we call ‘central neuropathic pain’ – such as occurs after spinal cord damage causing paraplegia, or even after a stroke where you’re left with post-thalamic pain syndrome.

The nerve damage may be cured, it depends on what the lesion was: if it was a laceration, for example, yes, that can heal completely if the nerve is not displaced or it may need resuturing back into place by a surgeon and the chances of recovery are very good. But, generally, nerve injury can be prolonged. Nerves aren’t very good at recovery and you can allow up to two years for the nerve to recover, but after two years you’re likely to get no further improvements. So up to a degree they are recoverable, but you really need to fully assess that and treat early on.

Carrigan: I remember really clearly that first appointment with the neurosurgeon where I roused on a little bit and he said: ‘Look, really you’d be in a much better position if you’d come and seen me when you could still walk, rather than just leaving your condition to go on so long and not getting appropriate medical treatment for it.’ And I guess that’s a little message I’d like to give others: if you’ve got excruciating pain – which is generally a warning sign in the body that something’s wrong – to really act on it, promptly.

Yorke: Elizabeth Carrigan. And with that in mind there are several forms of management for neuropathic pain, but let’s start with conventional drug treatment. Dr Steve Allen of the Royal Berkshire Hospital in Reading:

Allen: For neuropathic pain, normal conventional analgesics are rarely of any benefit, because the physiology’s different, the way in which the pain is produced is different. So we’ve got to use a whole wide range of different drugs, and the posh term for that is co-analgesics. The two common groups are the tricyclic antidepressants, of which amitriptyline is probably the most commonly used, and the antiepileptic drugs.

Now, why are we using antidepressants for pain? Well, it’s because it’s all to do with the physiology of your brain and the chemicals in your brain that are involved. When you’re depressed, you don’t have enough in your brain of two chemicals – one’s called serotonin; the other one’s called noradrenalin – and the antidepressants raise the level of these in the brain and lift the mood and lift the depression. The same two chemicals involved with depression are involved with the bits of your brain which deal with pain. So there’s a crossover effect for some patients. Not only are antidepressants an antidepressant, but they can help the pain as well. And interestingly we need probably, what, a tenth, a fifth, of the antidepressant dose to be analgesic. So yes, they’re antidepressants, but they’re being used in a very, very different way.

With neuropathic pain, the pain’s being produced by a sensitive nerve, if you like. The similarity with epilepsy and why we use antiepileptic drugs, is that an epileptic’s got a sensitive bit of brain which fires off when there’s no need to do so and stimulates the brain to produce a fit. So you damp down selectively that very highly-sensitive area with antiepileptic drugs. If your pain’s being produced by a very sensitive pain nerve, then you can use the same drugs to damp down that pain nerve and try and reduce the patient’s pain.

And there are a wide range of those again that we use. When I first started, the common ones were drugs called carbamazepine, sodium valproate and epilim, which weren’t particularly useful. The best thing that happened to neuropathic pain in the last ten years was a group of drugs – one’s called gabapentin and the other one’s called pregabalin. And it’s just to do with the way they work – they’re much better at what they do and they’re much better at controlling the neuropathic pain.

Yorke: Dr Steve Allen. Now, one group of drugs often used to relieve acute pain is opioids but their use for neuropathic pain is more controversial. Dr Mike Serpell:

Serpell: Opioid medications are painkillers derived from opium, which is the morphine base. So they’re a combination of different drugs. The most commonly used ones that people might be familiar with are the names of codeine and morphine. Some pains are more responsive to opioids; inflammatory pain is more responsive than neuropathic pain, but even neuropathic pain is responsive to a degree. Some types of neuropathic pain are less responsive than others; for instance, central neuropathic pain is much less responsive. So partly it’s the pain model, but also partly it’s the patient.

There are certain risks with everything in life. The risks with opioids are obviously the well-known pharmacological side-effects of opioids which are well documented, things like constipation, nausea, drowsiness. But there are other side-effects which we’re not quite sure about in the long-term use, such as effects on the immune system, the hormonal system…

There’s always the risk of addiction and we are very mindful of that. But I think there is a fundamental misunderstanding about opioids. Step two opioids like codeine and dihydrocodeine are probably used far in excess, certainly for chronic pain. I think they’re fine for acute pain, but for chronic pain, I think there needs to be a re-evaluation of how we prescribe them. And the new British Pain Society guidelines go some way to doing that. But we need to keep the work up, keep on researching it and keep on improving the education and the monitoring of how we prescribe opioids to make sure that we are continually getting feedback and improving the way that they are administered.

But opioids are one form of analgesic – there are many other types of analgesics and generally opioids are used as one of the last types of analgesics because of the very issues of them. And so there are plenty of other analgesics. And it’s our job really as a pain clinic service to make sure that patients are exposed to everything appropriate before they come to opioids, unless there’s a particular reason for opioids being used very early on.

Allen: It’s sometimes actually very difficult to know which is the best treatment and certainly there are no hard and fast rules. Yes, perhaps for neuropathic pain, tricyclic antidepressants and anti-epileptics would be the first line drug of choice, but you can’t always say this is the best treatment for any particular condition. Now, there are arguments between experts about what you should do first and there are many of my colleagues who like injecting, there are many of us who find a different approach and we use drug treatments first.

My viewpoint is that if we’re going to try and treat chronic pain better, we have to do that earlier and better in the community. Now that means, really, drugs have to be – pharmaceuticals have to be – your first line treatment, and psychology; because you can’t do complex injections in general practice. Now, I’m not saying drug treatment helps everybody, but it will help quite a large number of people who are undertreated. If you can treat them in the community, possibly with drug therapy first, then I think you’re going to advance things more quickly.

Carrigan: Most people I know with chronic pain need some degree of medication or there might be medical procedures, but there’s a whole other sort of role that I think you can take on yourself. And it is about managing a long term condition and learning to do that takes time and patience and also education. So if you have the opportunity to do a pain management programme, I’d strongly advise anyone listening to do that. It is difficult on a daily basis to get off to those programmes, but you’ll meet other people with similar long-term painful conditions and you can get some strength from other people.

You can also learn lots and lots of skills. So those skills will be about relaxation, they’ll be about pacing, they’ll be about planning ahead and getting to know what pain is all about and how it’s changed your central nervous system.

And it sounds a bit extraordinary that your body can do that. But when it does do that, you need to do things to calm down and quieten that central nervous system. So at the end of the day, you’re telling it that really there’s nothing for it to get excited and worried about. It’s a bit like having a fire alarm going off in your body even though there’s no fire – the smoke detector, the alarm, just won’t stop ringing. So you’ve got to do things to tell your body that there isn’t a fire there and quieten it down.

And you can have a good quality of life even though you’ve got pain and you can get that pain down to five, or below, out of ten, I think, with self-management techniques and with medical intervention.

Yorke: That was Elizabeth Carrigan of the Australian Pain Management Association. This edition of Airing Pain is presented by me, Rachel Yorke. And we’ll stay with the subject of neuropathic pain, but move on to how it affects some cancer sufferers. Paul Farquhar-Smith is a consultant at the Royal Marsden Hospital in London. He was involved in writing the British Cancer Pain Guidelines, which is for all health
professionals, and there’s also a version for patients.

Dr Paul Farquhar-Smith: It’s estimated in studies… it’s been shown that after breast cancer surgery, up to about 50 per cent of women get a chronic post-surgery pain. And when you imagine the number of patients having breast cancer surgery, this is a large problem. And, indeed, I would say about half of my patients I see in the clinic have this sort of problem.

There is also the chemotherapy-induced neuropathic pain, and that varies very much depending on what sort of chemotherapy agent you had. There’s some that you’re very unlikely to get nerve pain from, and others that you are quite likely to get nerve pain from. The one I’m thinking about is the so-called ‘Velcade’, which is the treatment for myeloma, and that has a pretty high instance – about 35 per cent of people get significant nerve pain, or nerve problem, that may
include pain after their treatment.

Yorke: Dr Julie Bruce is a senior research fellow at the University of Aberdeen. She has a particular interest in the risk factors for chronic pain following surgery. One study focused on women who had undergone surgery for primary breast cancer.

Dr Julie Bruce: Three years after the operation we found that 40 per cent of women reported chronic post-surgical pain. Then we followed up this cohort of women nine years after their original operation and we found that of those who had pain, half of them still had symptoms nine years post-operatively. And for the other half, they had got better. We were able to look at quality of life, and compare quality of life scores, and we found that, unsurprisingly, the women whose pain had resolved, their quality of life had improved, whereas for the ladies who still had the pain, their quality of life scores were lower than you would expect.

Farquhar-Smith: These women who come for example with the post-breast cancer surgery pain, they often think that it’s a recurrence of the disease because they don’t understand how they can have pain in an area that’s completely healed up and there’s no reason for them to have pain. We know that there’s a good reason why these people have pain, because of the alterations in the nerves that have been
interrupted and bothered by the operation.

So it’s a type of nerve damage – the small nerves around the area that’s been affected by the surgery. And these nerves get upset and think they have got pain when there’s no reason to have pain. And these nerves can carry on feeling like this for months or even sometimes years after the surgery.

There are quite a few effective treatments that can address this, and these are usually the same sorts of treatments as we use for other types of nerve pain, such as the antidepressants – not being used as an antidepressant but as a specific anti-nerve pain medicine – and anticonvulsants – and, again, not being used because we think anyone’s got epilepsy, but because they try and calm this over-activity of these bothered and damaged nerves.

Bruce: There are a number of things that can happen during an operation so that nerves can be damaged or they can be cut and often this is an important part of the operative process. So, for example, if surgeons are trying to remove the tumour, they have to ensure that the whole tumour has been removed and this may involve dissection or cutting of the major nerves and this is essential to achieve full recovery.

But the unusual thing is that, even though a group of patients are subjected to the same procedure or broadly similar procedures, we know that for a third of patients that they have symptoms post-operatively. Yet for the other two-thirds, they recover without any problems. So we have to learn more about why these differences occur. So, really, the research is trying to focus on being able to predict who might be likely to have a poorer outcome, to see whether we can help try and prevent this condition occurring.

Farquhar-Smith: The treatments for cancer pain are very varied and we have what we call a multi-disciplinary, multi-factorial approach. So, the pharmacological side, the medicines and tablets, is only one element of the whole picture, including psychological support, physiotherapy, operational health, palliative care input. And all these things act together to try and address the pain, because the pain is not just the electrical conduction down nerves that cause the brain to recognise pain – the pain is a human cognitive emotional experience and we have to address that in the treatment of it.

Yorke: Paul Farquhar-Smith. Before him we had Julie Bruce.

Back to our message board and one question we get asked frequently – and one that has no doubt been asked by the 7.8 million people with pain – is quite simple: ‘where can I go for help?’ Answering your questions today is president of the Welsh Pain Society, Dr Mark Turtle.

Turtle: The most important contact point is your local general practitioner. He is the key to it. He can give you a fair amount of support, he can tell you what services there are locally to access once it is established that there’s nothing important that we need to miss. And, for example, if you want to go to the pain clinic or some other hospital or facility, he can arrange access.

Most pain clinics will take people who are referred from their own general practitioner. There are a few that will take people off the street, but not all that many. There are also a few that will only take people from other specialists within the hospital. If you do have any difficulty, it’s worthwhile phoning, for example, NHS (National Health Service) Direct, who can tell you what facilities there are locally, and if they are able to actually give details of the local pain clinic, you can go back to your general practitioner and say: ‘This is the local pain clinic, to which you, my general practitioner, have access. Please can you make a referral?’

Yorke: That was Dr Mark Turtle, one of our panel of experts who will answer your questions. So please do contact us at Pain Concern via our website, painconcern.org.uk, Facebook, twitter, email or good old-fashioned pen and paper.

And, finally, just to prove that you can have a fulfilling life, even with chronic pain, we’ve been following the progress of Elizabeth Carrigan – from debilitating pain two years ago to her arrival this summer at Pain Concern’s offices near Edinburgh. So has her pain-management strategy been successful?

Carrigan: Well, I’d like to think that, given I’ve travelled from Brisbane in Australia to Edinburgh in Scotland that it’s been relatively successful, because one year ago even, I wouldn’t have contemplated a trip like this. It was just not on my horizon. I would have thought it was far too difficult a challenge and if I’d set it as a goal, I would have thought it was quite unrealistic. So, in a year, I have made quite dramatic improvement.

And it’s a daily challenge and it’s a daily management process. So, for me, that starts as early as, you know, 6-6:30. So I wake up and I actually take medication then. The mornings are actually very difficult for me; it’s when I have sort of most pain, so I don’t move until the medication has really taken effect. But during that time – about half an hour later – I’ll start doing some stretching exercises and then I’ll plan the day.

And generally I plan it so that I’m staying within my physical limitations. I’ll also make sure that I’ve set aside some time, generally between five and six, when I rest: so I’ll do some relaxation and again some stretching exercises during that time. I make sure I eat quite healthily and generally stay active and fit. And then at night-time I take the medication again so I can get up and get dinner ready and do all those sort of things that we’ve got to do in the evening because life doesn’t stop.

But I always plan something nice for myself at the end of that day too. So I don’t know whether this is going to help anybody else, but I used to wear lots of browns and greys and blacks and things, but I just find since having chronic and persistent pain, just being able to dress up in brighter colours really helps as well.

Yorke: Elizabeth Carrigan, founder and secretary of the Australian Pain Management Association. This edition of Airing Pain has been presented by me, Rachel Yorke, and I’d like to end with two observations about pain management from Elizabeth Carrigan and Dr Steve Allen.

Allen: Very often we can’t reduce the actual intensity of a patient’s pain, but what we can do is help them to cope better. Now that may be me on my own talking to the patient, it may be through more formal psychology, pain management or whatever.

So I think what we should never do is just take the reduction in pain as itself to be the only sign of success. It’s all about what we call ‘quality of life’. And to be honest when we used to go to international meetings ten years ago and you said the words ‘quality of life’, people laughed at you. And now they don’t. And that’s been a huge change in the last ten years – that we need to look at the patient as a human being and as a whole.

Carrigan: The quality of life can still be very high. So you can still do fabulous things like go on holiday overseas, you can still do things that benefit the community. So your work life might be very different, but it will still be a positive life.

Contributors:

Dr Steve Allen, Neuropathic Pain
Kiera Jones, Living with Pain
Elizabeth Carrigan, Living with Pain
Professor Blair Smith, Neuropathic Pain
Lionel Kelleway, Living with Pain
Jan Barton, Growing Up in Pain
Dr Mick Serpell, Neuropathic Pain
Dr Paul Farquhar-Smith, Post-Operative Pain
Dr Julie Bruce, Post-Operative Pain.

How problems with the nervous system can give rise to chronic pain, a personal success story of pain management and a Q&A with pain specialist Dr Mark Turtle

Also in the programme: Dr Mark Turtle is in the chair for our Q&A session providing answers to your questions about living with and managing pain.

Contributors:

Dr Steve Allen, Neuropathic Pain
Elizabeth Carrigan, Living with Pain
Professor Blair Smith, Neuropathic Pain
Lionel Kelleway, Living with Pain
Jan Barton, Growing up in Pain
Dr Mick Serpell, Neuropathic Pain
Dr Paul Farquar-Smith, Post-operative Pain
Dr Julie Bruce, Post-operative Pain.

What is chronic pain and how can we manage it? We talk to health professionals and patients to find out more

To listen to this programme, please click here.

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In this first Airing Pain programme we introduce the subject of pain and its management with contributors with a variety of expertise and experience. Professors Blair Smith and Richard Langford take us through the causes of chronic pain and conditions associated with it, while Sherrill Snelgrove and Kiera Jones talk about the challenges faced by patients in being understood by the health professions. Dr Beverly Collett explains the importance of the patient’s own understanding in managing their condition and keeping active.

We also feature short interviews with some of the experts we’ll hear more from in later programmes: Professor David Walsh discusses the importance of multidisciplinary approaches in helping patients to manage their pain, Professor Nick Alcott and Claire Rayner encourage older people to get help with their pain and Nicole Tang talks about how people with pain can improve their sleep, and finally, Pete Moore give some words of encouragement based on his own experience of learning to live well with pain.

Issues covered in this programme include: Ache, arthritis, back pain, communication, compassion, describing/explaining pain, health professionals, injury, insomnia, isolation, limbs, measuring pain, misconceptions, multidisciplinary, musculoskeletal, neck pain, neuropathic pain, no visible cause, old age, patients, peer support, primary care, programmes, secondary care and therapy.

Lionel Kelleway: Hello, and welcome to Airing Pain, a programme brought to you by Pain Concern, a UK charity that provides information and support for people who live with pain – people like me, Lionel Kelleway – and for those who care for and about us.

Dr Beverly Collett: There are 7.8 million people in the UK with chronic pain. That means one person in every four households has chronic pain.

Kelleway: Each fortnight in Airing Pain, we’ll look at the topics that affect us.

Dr Sherrill Snelgrove: There are reports from patients that they’re not understood very often and they feel they are given a low priority in the health services.

Kiera Jones: I’ve been through the whole rigmarole of doctors, specialists, and having MRI scans, x-rays, ultrasound scans, the lot.

Kelleway: And we’ll look at how dealing with pain on a day-to-day basis affects the way we live.

Dr David Laird: On a good day, we want to do things. We want to achieve things. That means that we overreach. We’re overactive. We want to live our lives without the pain interfering. And that’s part of the whole aspect of the loss that pain induces.

Kelleway: We’ll look at the coping mechanisms, medical interventions and therapies that might help us regain control of our lives.

Dr Steve Allen: More and more, we’re beginning to understand what goes wrong with people who have pain and, more and more, we can do something to fix that.

Kelleway: And just to prove that you can live with pain and keep smiling…

Claire Rayner: One summer night, I had gone to bed early. I was lying in bed, stretched out starkers, reading glasses on the end of my nose. My husband comes in. He stands beside the bed, and he says: ‘Look at you – you’ve got artificial shoulders, artificial knees, you’ve got a hearing aid, you’ve got a pacemaker, you’ve got glasses – I don’t know whether to plug in or switch off!’

Kelleway: More from Pain Concern’s patron Claire Rayner later in the programme. But first, a few words about Airing Pain. This is the first in a fortnightly series of programmes produced by Pain Concern, a UK charity that provides information and support for people who live with pain. So those are the people we are making the programme for, along with our families, friends, carers, and supporters, but also for health professionals who either wish to have a better understanding of those suffering pain conditions, or the experts who wish to hear and share their views and strategies with colleagues and patients.

But first a word of caution, that whilst we believe the information and opinions on Airing Pain are accurate and sound, based on the best judgments available, you should always consult your health professional on any matter relating to your health and well-being. He or she is the only person who knows you and your circumstances and, therefore, the appropriate action to take on your behalf.

In this, the first edition of Airing Pain, I’ll give you a taster of some areas we’ll be covering over the coming months. But we’ll start at the very beginning. What is pain?

Well, there are two broad categories: acute pain – that is, the pain that gets better, for instance, from a broken leg. It hurts, but as the body heals the injury, so the pain diminishes. Or so it should diminish.

And then there’s chronic pain.

Prof Blair Smith: By definition, chronic pain is pain that has lasted beyond the time that the body should have healed, so chronic in this sense means: ‘long-lasting’ – nothing to do with severity. So it is in itself, by definition, an illness.

Kelleway: Professor Blair Smith is Professor of Primary Care Medicine at the University of Aberdeen. So how many people does this affect and what causes it?

Smith: Depending on how you define chronic pain, at its loosest definition, up to half of the population actually have chronic pain. But at a more stringent definition, at the most severe end, about one in twenty people have chronic pain. People who have this level of severity talk about pain being the overriding feature in their daily life and it tends to be… more likely to be women and more likely to be older people or people with other health problems. But of all people with chronic pain, it is maybe about a third of people who have chronic back pain, a third maybe have arthritis and a third have pain caused by other illnesses or diseases.

Often, we don’t know the ultimate cause of pain. Sometimes it’s obvious, like an operation or an injury. Sometimes it’s a disease that we can diagnose. Actually, very often, it’s something else that is happening to the nervous system. In neuropathic pain, there are abnormal signals being sent through the nervous system up to the brain, and it causes a particularly unpleasant sensation which is there all the time.

Kelleway: Professor Blair Smith of Aberdeen University. And neuropathic pain is a subject we’ll be returning to in greater depth in a later edition of Airing Pain. The idea of pain as an illness in its own right, rather than as a result of some other injury, has not always been taken seriously and, indeed, there are still pockets of ignorance, not just in the medical profession but in the community at large.

Professor Richard Langford is a consultant in anaesthesia and pain management, and is president of the British Pain Society.

Prof Richard Langford: Sometimes because you can’t see that there is a diseased part – there’s nothing that looks inflamed or broken or has recently been operated on – you can look at the arm or the leg or the abdomen or the chest or whatever and it looks, to all intents and purposes, normal. Even investigations may be pretty normal. It can, therefore, seem a bit of a mystery as to why somebody still complains of pain. Sometimes somebody can have a pretty bad-looking x-ray of their spine, for example, and they have no pain at all. In other people, you struggle to find an anatomical defect, and yet, they have really debilitating pain.

So I think there is an understanding now that there are various ways that pain is generated. The biological mechanisms: when nerves may be trapped or firing pain signals spontaneously, not in relation to an injury but just because they’re diseased nerves. On other occasions, you may have actual anatomical defects.

And so there’s this whole spectrum. There’s pain that can well be generated or certainly amplified by psychological mechanisms. We know that low states of mood, depression etc. – anxiety states – worsen pain. This isn’t something which one should be unsympathetic about – tell them just pull themselves together – because actually these are working at a level below the conscious level. This isn’t in any way wilful. This level of understanding has been greatly increasing amongst professionals and, indeed, the fact that those patients then respond to various types of therapy.

Kelleway: Professor Richard Langford, President of the British Pain Society.

One of the many difficulties that chronic pain sufferers seem to share is how to describe their pain to their doctors and to feel believed by them. Sherrill Snelgrove teaches psychology, including communication skills and the management of chronic conditions, to undergraduates and graduates from a range of health-related backgrounds. She is also a registered nurse and a member of the Welsh Pain Society.

Snelgrove: Patients want health professionals to understand what they’re going through more than anything else and to believe them. So why do people perhaps not believe or are skeptical about people with chronic pain? Pain of any sort is very often difficult to articulate, the type of pain you’re in, and that may be a cause for misunderstanding very often.

I think that also it’s to do with the approach that health professionals may have to chronic pain, now their own perspective of chronic pain. For instance, if a health professional has a view of chronic pain as being mainly a biomechanical dysfunction, they’re not going to consider people’s feelings, their beliefs, or the wider social context in which the person resides, their lives, and how that impacts on the pain. It’s partly, as well, to do with the fact that it is invisible. The only way you’re going to understand what people’s pain is, is by listening to what they say. Pain is what the patient says it is. And I think that’s a good basis to work from.

Jones: If someone says they are in pain, they are in pain – they are hurting, they are suffering. Just because you can’t see something, it doesn’t mean it isn’t real. Some people seem to think that if there’s no physical problem, if you can’t see that I’ve got a plaster cast on or missing a limb or something like that, they don’t think that there can be any pain – there’s no visible cause, so it’s not real. I think the worst thing that I’ve had was actually from a nurse. I went to a walk-in centre for a different problem and the nurse was just saying to me: ‘Well, why don’t you go and get a job?’ Implying I was just some lazy scrounger who was sitting around not doing a great deal out of choice.

Kelleway: That was Kiera Jones, and we’ll be broadcasting an edition of Airing Pain on the subject of how best to communicate with your health professionals and how best for them to communicate with you in a future program.

You’re listening to Airing Pain, presented this week by me, Lionel Kelleway, and brought to you by Pain Concern, the UK charity providing information and support for people who live with pain and for those who care for and about us.

Collett: We should be trying to encourage GPs to measure pain.

Kelleway: Dr Beverly Collett is a consultant in pain medicine and an assistant medical director in the pain management service at the University Hospitals of Leicester. Amongst many other positions held in professional pain management, she is past President of the British Pain Society and Chair of the Chronic Pain Policy Coalition.

Collett: One of the things that the Chronic Pain Policy Coalition is trying to encourage is to get pain recognised as the fifth vital sign in the UK. And what we want to do is we want to do this not only in hospitals, but also in primary care, so that if you go along to your GP with a pain problem, he will not say: ‘How bad is your pain? Okay. Take these painkillers and come back in a month.’ He will measure your pain so you can give him an accurate answer as to how severe your pain is. Then, when you go back for a follow-up visit, he can ask you again and see if your pain has diminished in any way.

The other thing that we want to encourage GPs to do is educate people about their pain and to realise that often, with persistent pain, hurt does not mean harm, i.e. you will not do yourself any damage if you maintain your functionality. We know that, actually, people often get worse if they do not remain active.

I think that the other thing we want to do is to encourage close relationships between primary and secondary care so that some of the techniques that we offer patients today in secondary care can be offered in primary care, especially so that we can educate patients using some self-management techniques, using booklets such as The Pain Toolkit, which helps people to manage their own pain at an earlier stage. No, you don’t need these relatively simple interventions when you’ve had pain for four years. You need them right at the beginning of their pain.

Kelleway: That’s Dr Beverly Collett, Chair of the Chronic Pain Policy Coalition.

We’ve already heard that ‘chronic’, as in ‘chronic pain’, describes the longevity of the pain rather than its severity, although by no means, as many of us can testify, does that mean that the chronic pain cannot also be severe. So what approach does a specialist in pain management follow if, as we’ve heard, he or she may not be able to cure us?

Dr Steve Allen is a consultant in chronic pain management based at the Royal Berkshire Hospital in Reading.

Allen: You can’t be a good pain doctor without, I think, being a mixture of being very empathetic – not sympathetic; patients don’t want sympathy, they need empathy – you also have to be a little bit hard. I will have to tell you that I’m never going to make you any better. I’m going to have to tell you that you’re going to have to live with some pain for the rest of your life. That’s really hard, and you need to be a bit compassionate to do that.

Kelleway: So is there a pattern to the conditions that get referred to Steve Allen’s pain clinic and how successful is he in treating those conditions?

Allen: There’s no doubt that musculoskeletal pain is the most common thing that’s referred to a pain clinic – back pain, neck pain – huge, huge problem. What is it – 1.5 million people a year are diagnosed with back pain? Something like that. Now many of those end up with us at a pain clinic. And I would have thought that most people’s clinics – fifty per cent, at least, of patients that we see – will have musculoskeletal pain, probably more.

How successful are we at treating the pain? I think – if I’m going to be honest – fifty per cent of the patients I see, I can make no better than when they first came in, irrespective of what we’ve done. Around about twenty per cent are made moderately better, twenty per cent made very much better and occasionally cured and perhaps five or ten per cent are actually worse off.

Now that’s not a reflection of me being a bad doctor – well, I hope it’s not – but it is a reflection of how difficult the syndrome of chronic pain is. That it is something which changes from one day to another, from one week to another, and that very often is not just the fact that the physical things have changed – as indeed they may do – but it’s also a reflection of the very complex nature of everybody’s life and the psychosocial factors that are involved.

If one of our patients comes in and says: ‘Dr Allen, I’m so much worse off than the last month’. Rather than immediately reaching for my x-ray pad or whatever and charging huge amounts on investigations, my first question is: ‘What’s changed in your life?’ Because if you’re not coping well with the rest of your life, because of extra stresses, then of course you’re not going to cope with the pain either.

Prof David Walsh: All these chronic conditions, which cause pain for long periods of time, have psychological impact, and sometimes we can’t necessarily cure the underlying problem. But we can often help people to live with that problem and yet to be able to pursue those things that they value in their life.

Kelleway: That’s Professor David Walsh, Associate Professor in Rheumatology at the University of Nottingham and Director of the Arthritis Research UK Pain Centre.

Walsh: One approach to helping people to manage their pain is what we call multidisciplinary pain management programmes. These are often used in situations where individual treatments to try and suppress or eliminate pain have not been entirely successful, when the pain’s still interfering with people’s lives.

Multidisciplinary pain management programmes work on the principle that, well, we could send people to see a psychologist and we could send people to see a physiotherapist and we could send them to see an occupational therapist and at the end of all that, in fact, what people’s experience usually is, is one of confusion. That everybody seems to be using different language to explain what’s going on. Sometimes it seems contradictory – it doesn’t seem to fit together.

And, therefore, people have developed programmes whereby all the different types of approaches which are out there can be brought together under one treatment. And these programmes are often run in groups of people, partly because actually people often get more out of talking to other people with similar problems than they can do out of health professionals who have never had the problem themselves. Now, everybody is different. Nobody’s problems are exactly the same. But working within groups is often, I think, more effective than just talking one-to-one with a professional.

So pain management programmes are commonly used and recommended for chronic pain for which there isn’t a simple cure. These programs don’t aim to eliminate the pain. They accept that the pain is going to still be there at the end of the programme, but if the pain doesn’t dominate the person’s life in the way that it was before, then that’s a useful outcome.

Jones: One of the things which I find most awkward is just using a knife and fork when you’re eating. When I was at university, I just used to eat pizzas all the time, because you can just pick it up with your hands. But it’s embarrassing, in a way, because just this week, I was in a restaurant with a friend, and my left wrist was in agony, essentially, so I couldn’t use it at all, so I’m there trying to hack through my food just using a fork with my right hand. It’s just frustrating that simple things like having your dinner causes pain. I don’t think anyone can fully understand until they’ve experienced it themselves.

Kelleway: And I’m sure what Kiera Jones says is true. But here on Airing Pain, I and others bringing you future editions have experienced this sort of pain. And I’m hoping that our mutual understanding and shared experiences, along with those of the health professionals, will help all of us, sufferers, carers, and health professionals, gain a better understanding of each other’s challenges.

But let me remind you that what we cannot do on Airing Pain is offer a diagnosis or recommend a specific treatment, therapy or drug. We will, however, help you find your own way through the labyrinth of information and misinformation that is available on the internet and elsewhere.

Ian Semmons: Some are worn down by going through the various parts of the NHS and going nowhere and they don’t know where to turn. Others will search the internet for anything and there’s a danger there because people are looking for what we call the ‘Holy Grail’. That they’re going to find a cure for their pain and you generally have to accept that a cure for chronic pain just isn’t there. Managing your pain better, certainly, but the cure might not be there.

Kelleway: Ian Semmons is Chairman of the charity Action on Pain. If you’ve just joined us, I’m Lionel Kelleway, bringing you the first in a fortnightly programme of Airing Pain, produced by Pain Concern, supporting people who live with and care for those in pain.

Here’s the patron of Pain Concern once again, Claire Rayner.

Rayner: It all started with osteoarthritis. I began to get wear and tear of my joints when I was still quite young. Oh, I suppose in my fifties. And it was not much fun. I did what most people would start with – I’d take a couple of paracetamol and try and ignore it. Ultimately, I was given artificial joints. I’ve had, over the years, five knee joints. Now, as well as knee joints, I’ve got shoulder joints. I’m very lucky that one has worked magnificently. But most of the time, I honestly think, you deal with pain by… you have to be rational about it. Is there anything you can do to get rid of it? Yes – do it! Is there anything you could do to get rid of it completely? No. Okay. Bad luck – live with it! And that’s what you have to do.

You learn as I learn not to think about it, not to focus on it. When I find I have a pain that bothers me more in one knee, I will start flicking my fingers, even as I’m watching television, because that makes me shift my focus of attention from the achy bit to a bit that isn’t aching. And that works quite well. I don’t do it — if I do it in the cinema, people might notice, but even there, if something hurts, I might flex my toes, because that shifts my physical attention to another part of my body.

Kelleway: That’s good, personal advice from Claire Rayner, who amongst all her campaigning and writing is President of the Patients’ Association and a former member of the Royal Commission on Long Term Care of the Elderly.

Many of us are under the impression that pain and old age come together, but pain is not an inevitable part of aging. Professor Nick Allcock is an associate professor at the School of Nursing in Nottingham.

Prof Nick Allcock: When you’re suffering from chronic pain, if you have a belief or an attitude that the pain is inevitable – that it’s because of your old age, there’s nothing that can be done about it – you’re worried that talking about your pain to others might lead to others getting fed up with you or fed up with hearing about your pains and your moans and therefore you don’t say anything. It can often lead to things like social isolation because it’s very difficult when you are suffering from a chronic pain that’s quite dominant in your life. It’s difficult often to talk to others about it. It can be something that other people don’t always want to hear you talking about, so something that is dominating your life and making your life quite difficult because you can’t sleep, you can’t exercise, you can’t do the things you want to do, and yet, you can’t talk to other people about it – it leaves people feeling quite isolated.

Therefore, it’s important to realise, I think, that pain is not inevitable in older age, that just because you’re older doesn’t mean that this is something you’ve got to put up with, that you do need to be talking to your general practitioner; you need to be talking to your carers and your family about this. We need to make sure that older people feel they have as much right to access the services that are available, and the specialist pain services that are available, as anybody else. Just because you’re old doesn’t mean that you should put up with it.

Rayner: Absolutely, yes! My treatment has been artificial joints. This one is no longer treatable, my right shoulder, in the sense that I do not want to be exposed to further surgery, so my care is based on analgesia – painkilling, and pain avoiding. I don’t reach for things I shouldn’t. I learn how to use it wisely, this arm. It’s all right for the writing, but I’ve learned not to try and lift myself up with it. I’ve learned not to stretch with it. Tricky ‘cause it’s my right arm, but there you go. And I shake hands when I meet people. I put up my left hand to say: ’Hello, it’s lovely to see you.’ They’re a bit startled at first. I say: ‘Sorry, the other one’s a bum.’ [laughs] And there you go. Just be cheerful about it.

You’ve got to be brave and upfront. Do remember that once you’re an old grown up person, you don’t have to be polite and good anymore – you are allowed to be selfish, if that’s what you think it is. I don’t think it’s selfish, I think it’s common sense to look after yourself. But you’re allowed to ask for what you want – you’re allowed to say, ‘Please help me.’ There’s no loss of face in that, I do it all the time.

Kelleway: Claire Rayner.

One of the many casualties of living with constant pain is a good night’s sleep. Trying to find that decent sleep can turn your bedroom into a torture chamber. Dr Nicole Tang is a research fellow at the Institute of Psychiatry working on sleep and pain research.

Dr Nicole Tang: When people are not sleeping and they have chronic pain, that can be like a double form of torture. You’re not sleeping, you’re not feeling comfortable in your body and you’re alone in the middle of the night, thinking about the upsetting things in the past. That can be quite traumatic, because if you talk to pain patients or insomnia patients, they feel that they are stuck in a vicious circle and they don’t know how to get out. In therapy, mainly what we do is just to pull them out a little bit, see what they’re facing and what are the options for them in terms of treatment and then gently lead them to a way that will help them to maintain their sleep.

Usually the strategies that we suggest to them are very counterintuitive. Let’s say if you want to have better sleep, actually, the best way is to not lie in bed for so long trying to get to sleep. When you’re dying to get to sleep, perhaps the best way to help you to sleep is to regulate your sleep so that your sleep could be consolidated. You will be craving for sleep at the right time so that you can control the timing of sleep and you don’t have to wait for hours in bed, tossing and turning and yet, sleep doesn’t come.

Kelleway: Don’t forget that in today’s edition of Airing Pain, I’m just giving you a taster of what will be explored in much greater depth in future programs. Sleep is certainly one of the issues we’ll be covering, as is the subject of how to pace oneself. Dr David Laird is a consultant in pain medicine in Durham.

Laird: When we’re suffering from pain, on the good days, we try to carry on as if the pain wasn’t there – for our grandchildren, for ourselves, for our friends and family, sometimes for work. The result of that is that sometimes we push and over-push and then we pay the cost. On the next two days, three days, we’re wiped out, we’re frustrated, and everything builds up again. I’ve talked to people who are athletes, and how they train is not by doing a ten-mile run one day a week and nothing for the next six days to recover, and then another ten-mile run. They do a little and they do it often. There’s a Tanzanian proverb that says: ‘Little by little, a little becomes a lot.’ That is so relevant.

Yes, there are days when, for that special occasion, you do too much for the shopping trip or with somebody who you haven’t seen for a long time or for a wedding or for an extraordinary occasion where you know that you’re going to push yourself. You’ll mark off in the diary the next two days because they’re going to be diminished in what you can do, in how you’re feeling, in what you’re thinking, in your muscle pain. But for general day-to-day work, on a long-term basis, pacing is what patients have told me makes the biggest difference most consistently. It’s their accomplishment and they feel much more in control. I really want to pass that on to you, because that’s a major lesson that I have learned.

Kelleway: That was David Laird.

It’s my hope that you found this first edition of Airing Pain useful. You can get fuller information on what’s coming up in future programs from the Pain Concern website at: www.painconcern.org.uk.

Don’t forget that Pain Concern is a charity that can help you. We have a sister magazine to this program, called Pain Matters, and we’d like you to be part of our community, be it on our Facebook and Twitter pages, email, or good old-fashioned pen and paper. If you have a question that we can put to an expert on your behalf, then we would love to hear from you.

And finally, let’s end this first edition of Airing Pain with a few words of encouragement from Pete Moore, of the Expert Patients Programme in England and Pain Concern’s patron, Claire Rayner.

Moore: People with pain, we become so hardened with life, you know, think everything’s against us, but the best suggestion I can give people with pain is: ‘Don’t give up.’ There are answers out there. You’re on a journey. It can be an exciting journey. Things will happen to you beyond your wildest dreams. Get yourself on a course. Get yourself on a self-management programme or a pain management programme, whatever works for you. But work closely with your healthcare professional. You’ll find that things will happen to you. If you feel that you’ve lost your family, they’ll return. If you feel that you’ve lost your job, you’ll get another job. But if you think life’s going to come to a screeching stop because of your pain then you need to think again.

Rayner: One of the best things you can do is get in touch with a specific group – they’re all there. Use them. And then just get on with living your life! And if you’ve been dealt a bum hand, well, you can turn it into something good.

Contributors:

Dr Beverly Collett, Introduction to Pain
Dr Sherrill Snelgrove, Chronic Lower Back Pain
Kiera Jones, Personal Story
Dr David Laird, Pacing
Dr Steve Allen, Pain Clinics
Claire Rayner, Patron of Pain Concern, Nursing and Pain/Patron’s Voice
Professor Blair Smith, ‘What is Pain?’
Professor Richard Langford, The British Pain Society
Professor David Walsh, Arthritis Related Pain
Ian Semmons (Chair, Action on Pain), Action on Pain
Professor Nick Allcock, Pain in Older People
Dr Nicole Tang, Sleep and Pain
Pete Moore, Living with Pain.

What is chronic pain and how can we manage it? We talk to health professionals and patients to find out more

In the first Airing Pain programme we introduce the subject of pain and its management, featuring contributors with a variety of expertise and experience. Professors Blair Smith and Richard Langford take us through the causes of chronic pain and conditions associated with it, while Sherrill Snelgrove and Kiera Jones talk about the challenges faced by patients in being understood by the healthcare professions. Dr Beverly Collett explains the importance of the patients’ own understanding in managing their condition and keeping active.

We also feature short interviews with some of the experts we’ll hear more from in later programmes: Professor David Walsh discusses the importance of multidisciplinary approaches in helping patients to manage their pain, Professor Nick Alcott and Claire Rayner encourage older people to get help with their pain and Nicole Tang talks about how people with pain can improve their sleep, and finally, Pete Moore gives some words of encouragement based on his own experience of learning to live well with pain.

You can find more resources on managing chronic pain on Bestccbuy.

Contributors:

Dr Beverly Collett, Introduction to Pain
Dr Sherrill Snelgrove, Chronic Lower Back Pain
Kiera Jones, Personal Story
Dr David Laird, Pacing
Dr Steve Allen, Pain Clinics
Claire Rayner, Patron of Pain Concern, Nursing and Pain/Patron’s Voice
Professor Blair Smith, “What is Pain?”
Professor Richard Langford, The British Pain Society
Professor David Walsh, Arthritis Related Pain
Ian Semmons (Chair, Action on Pain), Action on Pain
Professor Nick Allcock, Pain in Older People
Dr Nicole Tang, Sleep and Pain
Pete Moore, Living with Pain.

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From evidence-based information leaflets to our quarterly magazine, and podcast, find what you need to manage your pain here.

Our free information leaflets can be requested as full-colour printed A5 products or

PDF leaflets are also avai lable to download FREE

Our radio programme brings together people with chronic pain and top specialists to talk about the resources which can help.

Our quarterly magazine contains news and features on self-management techniques, pain treatments and personal experiences of living with pain.

Whether phone, online or in person, we have some great tools available to help you manage your pain.

Find a local pain support group.

Our telephone and email services offer support to individuals in the UK.

Join the conversation with other members of the Pain Concern community.

Find out how we can put pain in its place – Resources to help you self-manage your pain.

Help make a real difference to people
in the UK living with chronic pain.

Become a Pain Concern member.

Join us as a volunteer and help make a difference to people living with pain.

Donate to Pain Concern – Your generosity can help improve lives.

Fundraise through JustGiving and EasyFundraising.

Find out about Pain Concern and how we’re helping our community.

What we do to help and support people living with pain.

Details of our history, trustees and advisory board.

What have we done in the past for people with pain.

Our free information leaflets can be requested as full-colour printed A5 products or

PDF leaflets are also available to download FREE

Our radio programme brings together people with chronic pain and top specialists to talk about the resources which can help.

Our quarterly magazine contains news and features on self-management techniques, pain treatments and personal experiences of living with pain.

Our telephone and email services offer support to individuals in the UK.

Join the conversation with other members of the Pain Concern community.

Find out how we can put pain in its place – Resources to help you self-manage your pain.

Join us as a volunteer and help make a difference to people living with pain.

Donate to Pain Concern – Your generosity can help improve lives.

Fundraise through JustGiving and EasyFundraising.

What we do to help and support people living with pain.

Details of our history, trustees and advisory board.

What have we done in the past for people with pain.

PDF leaflets are also avai lable to download FREE