Pain Concern

Setting the record straight on arthritis, and practical tips on living with the condition.

This programme was funded by Pain Concern’s supporters and friends.

In this programme we tackle the issue, raised by Judy on our forum, of how people with arthritis – which often has no obvious physical symptoms – can get help in explaining their condition to those around them. Professor David Walsh explains about the different kinds of arthritis. Jo Cumming, Kate Llewelyn and Minal Smith of Arthritis Care talk about their own experiences of the challenges of living with pain and how the information the charity provides can help people like them.

Although arthritis is commonly thought to be a condition which only affects the elderly it can affect people of all ages – even babies. Kate Llewelyn, who developed arthritis at a young age, tells us about Arthritis Care’s booklet for parents, which provides strategies on how to adapt family life when a child is diagnosed with a form of the disease.

Issues covered in this programme include: Arthritis, misconceptions, explaining pain, flare-up, joint pain, inflammatory arthritis, osteoarthritis, exercise, relationships, hate crime, lack of understanding, pain beliefs, invisible disability, school, children and young people, depression and elderly people.

Contributors:

Professor David Walsh, Associate Professor in Rheumatology, University of Nottingham and Director, Arthritis Research UK Pain Centre
Jo Cumming, Kate Llewelyn and Minal Smith, Arthritis Care.

The health professionals working to improve pain management, and the importance of getting patients more involved

To listen to this programme, please click here.

Prefer a PDF?Download

The relationship between doctor and patient is crucial in managing pain. In this programme we look at how the British Pain Society’s newly launched Pain Patient Pathways Project should improve the way health professionals manage chronic pain conditions. We’ll hear from a patient about her varied experiences with health professionals and from doctors involved with treating pain about the importance of patients getting involved in the treatment of their own condition.

Issues covered in this programme include: Patient involvement, patient experience, patient voice, educating health professionals, back pain, depression, communicating pain, breakdown of communication, patient liaison committee, GPs, multidisciplinary, assessment process, tailored treatment, support group and volunteering.

Paul Evans: Hello. I’m Paul Evans and welcome to Airing Pain, the programme brought to you by Pain Concern, the UK charity that provides information and support for those of us living with pain. More information on fundraising efforts, is available on the JustGiving page on our website which is: painconcern.org.uk.

Douglas Smallwood: I think if we can map out what the care that a person with a condition experiencing pain should receive, if we can map that out and get an agreement to it, then we can start to hold clinicians the system manages to account for delivering it.

Evans: In this edition of Airing Pain, we will be looking at how the British Pain Society’s Pain Patient Pathways project, should improve the way health professionals manage chronic pain conditions and, not I hope unconnected with this, we will also look at the importance of that crucial relationship between doctor and patient. What happens when it goes well? And what happens when it breaks down?

Jean Smith has numerous health-related conditions, including, chronic back pain and depression. She was not confident of being able to speak to me by herself, so Jeff Williams, a close friend and support for many years, joined us.

Jean Smith: The pain can bring on the depression. So when you recognise the signs, I am not saying I can do a lot about it, but at least I know in a couple of days’ time it will ease.

Evans: When you said you ‘felt the signs of depression coming over you’, what does that feel like?

Smith: [Sigh] You are cheesed off, you cannot focus on a lot of things, when I am bad I sleep a lot, I do not go to the doctors unless I have got too.

Jeff Williams: When you were seeing them, if you went to see the doctor for your pain, what would the doctor tell you?

Smith: ‘Go and see your psychiatrist.’

Williams: And when you went to see your psychiatrist what did…

Smith: ‘Go and see your GP.’ They tend to push you from one to the other when you have got double diagnosis.

Williams: So, in other words, they never actually then give you anything…

Smith: And I have one doctor…oh she is lovely! She sits there – ‘How are you today Jean?’ And I feel like saying ‘I am not a little 5-year-old, you know I am me. I might suffer with depression and mental health problems, but, you know, I am still compos mentis!’

Evans: Now, we cannot comment on individual cases, indeed, you will know that we always give these words 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 wellbeing. He or she is the only person who knows you, and your circumstances and therefore the appropriate action to take on your behalf. But I have to wonder, how many people as in Jean Smith’s experience, feel that their health professional does not appreciate their circumstances.

Smith: My Social worker has told me that I am not a very good patient, because whenever the doctor asks – or the psychiatrist – ‘How are you?’ ‘I am fine.’ He said ‘you do not tell people what you are like’. I said ‘well, people do not want to hear what you are like, people do not want to hear you moaning’.

Williams: Are the doctors very friendly? Do they always greet you in ‘oh yes, have not seen you for a while’ or you know try to build up a conversation with you, to find out what is the matter?

Smith: I did see a locum last winter – and I suffer with asthma and I had to have antibiotics – and this locum said to me ‘you old people are all the same’.

I said ‘What do you mean?’

‘Do not have enough heat in, in the winter, that’s what causes it.’

I went back, in May I think it was, in the spring anyway and who was there but the same locum and he said ‘you have got an infection again’.

So I said ‘well, tell me now then doctor, I said, I do not need heating now, what is causing it now then?’ I said ‘It cannot be a cold house’.

Evans: How did you feel when a GP tells you basically, it is your fault?

Smith: [sigh] Oh, none of us like being told that. I tried to take it on board and think about it, and work out whether they are right or not, and if they are I try and do something about it.

Evans: But you say you do not go to the doctors enough…

Smith: Because all they ever do is give you painkillers…. I live on painkillers. I have always maintained that there is help out there for people who are druggies; there is help out there for people who are alcoholics and there is help out there for a lot of other things – smoking; but there is nothing out there that gives you any help or says anything about patients who have been addicted on prescribed drugs. I have asked doctors in the past, ‘Are these addictive?’

‘No.’

I had one tablet off the doctor and I said ‘I am sure I have put on weight since these tablets’.

‘Oh rubbish’ he said.

I said ‘I do not think so’.

That passed, I asked another doctor, he was honest enough to tell me ‘yes, you put three or four stone on when you take this medication’, he said.

Evans: Jean Smith has shown how a breakdown in communication with a healthcare professional can lead to a lack of confidence and in her case a feeling of worthlessness. The patient’s opinion and input may have counted for nothing in years gone by, but in the broader scheme of things, a lot of progress is being made.

Now, the British Pain Society is a national organisation. In fact, it is the largest UK voluntary organisation for healthcare professionals working in pain management. So, where does the patient’s voice fit into this professional organisation? Well, Douglas Smallwood is Chair of its Patient Liaison Committee and Pain Concern’s Christine Johnson spoke to him at their voluntary sector seminar in London.

Douglas Smallwood: A number of years ago, the professional membership decided that it wanted to make sure that the voice of the patient was heard within the work of the society, and therefore a decision was made to set up a patient liaison committee. There is currently approximately 10 of us, that is seven people with chronic pain and three healthcare professionals, so it is a committee of both patients and professionals, which I think is very helpful.

We meet about six times in a year and our objective is to feed into the work of the professional membership of the society. So, for example, there is a series of special interest groups, dealing with different types of pain that the professionals join and one of our objectives is to make sure that a member of our committee is also present at the meetings of the special interest groups, so the views of patients can be built into their work. Because I chair the committee, I go to meetings of the Council of the British Pain Society and can feed-in the patient view there. The one point I would emphasise is that there is no… we are not here to develop the British Pain Society from a professional organisation, to a patient organisation. The Pain Society is a professional organisation and the aim is to make sure that the professionals have the benefit of the experience, the knowledge and the views of patients.

Professional-only organisations do great things, patient organisations do great things. I think that the great potential of an organisation that makes sure the patient voice is there, as well as the professional, is that sitting together, in my opinion, more can be achieved. So, if you are trying to influence government, in my experience, there is nothing more powerful than to have the patient talking to a government minister or the Chief Executive of a PCT about their experience of the service, what they experience, what they need and to what extent the service matches up to that. Nothing more powerful than that.

However, to move politicians and to move managers you need more than emotion and experience: you need logic, you need professional understanding of clinical matters and you need to put the two together. So, in my experience, if you are trying to change what services are provided and how they are provided, to make a compelling case to the decision makers, you need a mixture of the patient voice, combined with the knowledge, the expertise of the professional.

Evans: Douglas Smallwood, Chair of the British Pain Society’s Patient Liaison Committee. Now, the theme of its annual Voluntary Sector Seminar was ‘Pathways for pain management: giving them life’. This refers to the Pain Patient Pathways project, which evolved from the Chief Medical Officers’ report of 2008, highlighting chronic pain as a clinical priority and the need for a consensus on the best practice care pathways. So, in 2011, the British Pain Society, set up a working group to produce pain patient pathway mapping guidelines.

Dr Martin Johnson, is the Royal College of GP’s UK Champion in Chronic Pain and he is on the Executive Committee for the Pain Patient Pathways.

Dr Martin Johnson: The British Pain Society has never had any pain pathways before. They have published leaflets on various aspects, but they realised to defend pain medicine within the context of UK spending cuts, that they had to develop some national pathways, that anybody in terms of clinicians or commissioners or patients can say that these are the overall general pathways that we can follow.

There are five disease areas that we are looking at in terms of pain. There is going to be a general assessment principle, that means wherever a patient presents with chronic pain, these are going to be the basic things that you should do. Then there is one on neuropathic pain, which will partly incorporate the NICE Guidelines. There’s going to be one on musculoskeletal pain, particularly what we call widespread pain which is similar to fibromyalgia. There is going to be quite a complex one on low back pain or spinal pain in general. And, finally, there is going to be one on pelvic pain from both males and females.

One of the things to do as well as publish them, there is going to be a whole implementation strategy. In fact, we have been sat in a meeting this morning with the patient group at the British Pain Society, talking about how we should try and implement some of these pathways going through primary care. So it will be a matter of publishing books, getting guidance within all the GP magazines, on radio shows like this, newsletters coming out from the British Pain Society or the Royal College, getting patients educated on it.

Christine Johnson: What are the benefits of having patient input, in developing the pathways? How did that work?

Dr Johnson: Right from the word go, when Richard Langford our president of the British Pain Society, set up this pathway group, he decided we should have – rightly so – patient input, so we get their experience of having a painful state. I know talking to some of the patients, it has been difficult sometimes when you start… and they are working as the only patient within a diverse group of healthcare professionals. Sometimes they can feel left out and I think we have had to change the way we have worked so that they are inclusive within those pathways so that we can get their experience. But actually, the most important part is not going to be in the actual development part – it is actually the getting it out there part and making sure they are used, that is where patient power, I hope, rules okay.

Johnson: And if a patient feels that their GP is not following their pathway, what can or should they do?

Dr Johnson: That is always an interesting question in any pathway. I think the important thing with pathways – and this is the experience with other pathways from other disciplines like respiratory – is that we need to get them locally implemented. So it will be taking the national framework, and saying ‘how do we adopt this locally?’ Which means you can then use the resources that exist within your local area, or make sure that you bid for the resources.

Patients are always individuals and there is going to be instances where the pathway might not be appropriate. This is going to be, I would hope, for 95 per cent of the patients with those particular areas it will be something that they can implement. But in terms of the question you asked me, what we were looking at this morning is ways to empower patients, so, effectively, we give them the information through a variety of sources, through various patient groups. So, if they feel that the information is not getting through to their GP, then they can actually ask their GP ‘is there something more appropriate?’ They will be hosted on the nationally available site Map of Medicine, and I believe patients do have access rights to that.

Johnson: And in terms of patient education, how did self-management inform the make-up of the pathways and the development?

Dr Johnson: There are several key components’ that are common to all the pathways. So, for example, medicines management is one of them, but the other major one is self-management. All the work coming out of groups such as Co-creating Health which is the big pilot happening with self-management shows that self-management works. And it particularly works when patients are supported by other members of the team.

And I think it is important for even clinicians to realise that self-management is something that can run alongside other forms of management. So even if you have got a patient that needs a spinal intervention, they still need to self-manage as well. So to the extent we may well have to develop a specific pathway to give more information about self-management. We have got people involved, such as Pete Moore from the Pain Toolkit, which means that patients should hopefully get information about that.

Johnson: And back to the education, how do you hope this will change pain education for health professionals?

Dr Johnson: That does link in with the implementation strategy. I am hoping that it will give the necessary information, because the pathways are, I hope, a very good balance between both evidence-based medicine and a pragmatic approach where the evidence doesn’t exist. So it will give a framework for healthcare professionals to manage chronic pain which is one of the biggest issues that we deal with in medicine.

Evans: Dr Martin Johnson talking to Pain Concern’s Christine Johnson at the British Pain Society’s Patient Liaison Committee Annual Voluntary Seminar.

Here is Douglas Smallwood, Chair of the Patient Liaison Committee once again:

Smallwood: My personal experience as a person with a long term condition and some pain, is that I really want the services to be joined up, so that I see the right professional at the right time and in a convenient location and that is not my experience of the service. I think the pathways will assist with all those points.

There was a seminal report two or three years ago – wasn’t there? – from the Department of Health chaired by Lord Darzi, and he had defined quality as having three components – quality of care: one was clinical outcomes; one was patent experience and the third was patient safety. So a high quality service achieves those three things.

I think if we can map out what the care that a person with a condition experiencing pain should receive, if we can map that out and get agreement to it, then we can start to hold clinicians, the system, managers to account for delivering it. When that isn’t mapped out, it makes it rather more difficult for people to hold to account.

Evans: Now, Douglas Smallwood talked about his wish as a patient for a joined-up service.

Mark Ritchie is a GP in Swansea and he has a special interest in pain management.

Mark Ritchie: In Swansea we have very recently set up a pain service which is really in its infancy at the moment, but it has been trialed for almost a year now. And what we have done, is we have taken methods of examination on patients and methods on treating patients from pain services all around the country. We then combined that into a service which we are now putting forward. A part of this is what we call a multidisciplinary assessment, but it is more than just a multidisciplinary assessment, it leads onto multidisciplinary management and an overall holistic approach. So, multidisciplinary assessment means we are not only assessing the patient by a doctor on his own, we are using other disciplines. In this particular case we are using a physiotherapist and we are using a nurse trained in pain management and to a lesser or greater extent we use a psychologist as well.

So what do we do? Well, the patient comes before each of us in turn, there might be two of us together if our examinations overlap. They come to each of us in turn, in a roundabout way, so you might have three patients simultaneously, one for each of us, and then rotating. As a doctor or a physician, I first need to confirm my diagnosis or the diagnosis that has been put in front of me. I need to make sure that there aren’t any what we call ‘red flags’ – things that mean this person could need immediate surgery or hospitalisation, or maybe underlying things that could point towards cancer, things like that, so my primary task is a medical one initially.

Once I have got through that little bit, which really is the first five or 10 minutes, we then move onto actually questioning the patient further: ask them how long this has been going on for; looking at the modalities of pain; the types of pain they have been feeling; then examining them and then the whole way through giving them feedback.

So, having done that, they will then move onto the physiotherapist. A physiotherapist is very much a musculoskeletal type assessment, but in this case, it is not just ‘can you move your arms and legs?’, it is functionally based. So, the physiotherapist will do things like getting them to walk backwards and forwards over a 10-metre strip for instance, just to see how fast they can do this task. Maybe lifting a ball, and placing it on top of a shelf up and down, up and down, to see how they function – are they able to do basic tasks? Because management here, is not necessarily going to be cure, it is going to be managing both their pain and their life, so they can get the best out of both.

Then they will move onto the nurse. The nurse will do a more psychosocial assessment, where they will look at their living situation: their spouse, their relationship with others, things like sex life comes into it and so on. All of this is then noted down as well.

Once that is finished, the three of us get together as a team for a few minutes, to discuss what we have found. And then we bring the patient in as the fourth member of the team. So, the patient is then drawn into that assessment, we discuss what we have found and ask the patient’s comments on what we have found and we then develop a plan based on the patient’s needs and what we have seen as his needs, as well as what he or she sees as needs. And then from there we can move forward into treatment.

Evans: So, having assessed the persons’ needs and ability, what happens next?

Ritchie: Well, firstly, can I roll back a second before they are even being assessed. We have a triage system when the letters come in first from the different referrers. And at that stage a number of them will go straight back to the general practitioner. Maybe they haven’t tried certain basic medications, maybe we have simply had a query from a GP as to where and how to proceed… we have got this far, where do we go?

We don’t wipe them out of the service, we merely say could you try this for three months, and then, if not, send them into us. So that is the first part. Once they have actually been through the assessment team – they have been invited along to the assessment team, before they even arrive – we start to include them in this team work. So, we send them a number of questionnaires, we send them a catastrophizing scale, anxiety and depression score and a brief pain inventory. So, we send them these three questionnaires, so that they can actually put down on the paper where they feel they are. One of these scorers has got a little diagram of the human body on it, so they can actually draw on it, and show them where their pain is. So they have already involved at that stage.

Now they have been through this assessment process, where they have again been involved and now we come out of it – so where do we go from here? Some of them simply need advice, and they will get that advice, we will send that advice back to their general practitioner. We might immediately change a drug, if there is something obvious that needs doing and again, back to the GP. Some of them will need that and other things. So, a classic example, a minor change in medication, a referral to podiatry because the person is flat-footed and needs orthotics and a referral onto what we call a pain management programme.

So not a curative service. If their pain was curable, they probably would not be coming to see us.

Evans: Should patients be asking for this service?

Ritchie: Absolutely! I think if they are at the limit of what their general practitioner is capable of managing, then I certainly think that they should have the right to request an ongoing referral. But I think they also have to balance that with the realisation that their GPs and their doctors are pretty well trained, and they need to move into that service when it is appropriate, not just on day one. So, this really is for people where we have passed the point of natural healing, normal healing, and there is still an ongoing problem.

And those are the patients we need to refer in. But at that stage, the sooner the better, because people who are not yet off work, people who are still working but maybe moving towards a situation where they might end up being off work, those are the patients we need to get sooner, rather than later – that in-between phase, if I can put it that way.

Smith: I went to a pain control clinic in Bronllys which was an offshoot from Saint Thomas’ in London, and I found it excellent.

Evans: Well, just to remind you that Airing Pain featured that residential pain clinic in Bronllys in mid Wales (mentioned there by Jean Smith) last year. And you can download all editions of Airing Pain – and that particular programme is number five – from our website at painconcern.org.uk.

Smith: You were assigned a physiotherapist each patient and they worked specifically to you and your problems. We agreed to disagree in the end. She wanted me to do certain things and I said ‘No’. And I said ‘It is my back, not yours’. I said ‘I will do what I can’. So we still stayed friends! [laughs]

Williams: How were you after the course then?

Smith: Good for a while.

Williams: Did you have to keep up any exercises?

Smith: Well you were supposed to yes, did I?… Living on my own I need that incentive. I find with a lot of things these days, I need that little push, that incentive to do things. If I am in a class or with other people, I do them fine, but on my own I tend not to do them.

Evans: Well is that not the same for most of us? That things like pain management programmes and I have done the expert patient programme… [Smith: I done that as well last year.] …and you are fired up immediately, but the follow-up is the most important thing.

Smith: Well, I went to that last year and I found that very good. They had a relaxation CD, and we were given a book at the end of the course. And that relaxation CD is one of the best that I have ever heard.

Evans: Jean Smith. Later in the year I will be taking part in Arthritis Care’s Challenging Pain Programme. That is for people with all sorts of chronic pain conditions not just for those with arthritis. I will report back to you on Airing Pain how I get on. But It does seem that self-management is a key element to living with chronic pain.

Kevin Geddes, is the Director of Self-management with the Long Term Conditions Alliance in Scotland.

Kevin Geddes: Self-management means different things to different people, but in essence it really is strategies and approaches that people take to managing their own condition, either themselves, or in partnership with their families, carers or with health professionals. Different ideas that people have about looking after themselves and getting involved in their own condition, really. Allowing them to get on and really enjoy the things that they want to do in their life [laughs] without focusing too much on the clinical aspects of their condition, really.

A lot of the work that we do is across different sectors: across the voluntary sector; across the NHS; across local authorities. But really at the heart of that there is always the experience of the people who live with long term conditions, or care for people in their family that live with long term conditions.

All the ideas and the approaches that we have been involved with so far, have come from people living with long term conditions themselves, who know best how to manage their condition and know best how to react to their body and know best who to ask for for support when they need that. So, really, I guess that the message is the we really want people to get more involved and tell us what ideas are missing and what ideas would work best for them.

The key message is that people should get involved in the management of their own condition and really step up a little bit and see what they can do for themselves. It is not about being alone in that process, there is lots and lots of support that people can access: in the community, in the voluntary sector, in the health service and from the local authority, that can help them to live better lives. And I guess to help people feel in control of their conditions, so that their condition is not in control of them.

Evans: When I phoned you up last week and said that your name had been passed on to me and I should speak to you…

Smith: Yes…

Evans: I know and from when I arrived this morning, that you were petrified of speaking in front of a microphone, which is why you have brought your very good friend Jeff along with you to help you out…

Smith: And work colleague…

Evans: And work colleague.

Smith: Yes.

Evans: But you did say to me on the phone, ‘well I need to be putting something back anyway’.

Smith: I used to help run a support group. I also worked voluntarily for about 10 years, in the mental health network, in the end [laughs].

Williams: Does helping in a support role, or voluntary sector or whatever it is, does that help you?

Smith: Yes, I suppose to give something back to the community, to give something back to other people who have been in similar positions. And you think you are the only one. You do not realise that there are other people out there who suffer the same, or even more than what you do.

Evans: We are coming to the end of this edition of Airing Pain, so there is just time to remind you, that if you want to put a question to our panel of experts, or just make a comment about these programmes, then please do via our blog, message board, email, facebook, twitter, or pen and paper. All the contact details are at our website which is: painconcern.org.uk.

I will leave you with Jean and her friend Jeff Williams to recall what happened when she became involved in teaching young disabled children to swim.

Smith: I did not feel any self-worth at the time and there was one incident where there were two swimming teachers there and they could not get this little girl to go in the pool. I sat and I talked to her and we played on the steps in the pool and then she came round the pool with me. It was such an achievement because the teachers had failed. [laughs] It was great. I did it for a few years.

Williams: A number of times you said you did not have any self-worth, did the children help with this?

Smith: Yes, because children don’t judge you, adults do.

Williams: How do you know the children took to you, what did the children used to do?

Smith: [laughs] Tell me all their secrets!

Williams: How did they tell you their secrets?

Smith: Their mothers and fathers would come in and I would say ‘well I know quite a bit about you!’ [laughs] The kids will tell you all their secrets.

Williams: How did children used to take you?

Smith: They used to come over. Once I went into the pool, they would all come over and we would all toddle off to the Jacuzzi and have our daily con-flab! [laughs]

Williams: That made you feel a lot better?

Smith: Oh, it was brilliant!

Contributors:

Douglas Smallwood, British Pain Society
Dr Mark Ritchie, GP, Swansea
Kevin Geddes, Director of Self Management with the Long Term Conditions Alliance in Scotland
Dr Martin Johnson – Royal College of General Practioners’ UK Champion in chronic pain; on the executive committee for the Pain Patient Pathways
Jean Smith, patient.

The health professionals working to improve pain management, and the importance of getting patients more involved.

This programme was funded by Pain Concern’s supporters and friends.

Contributors:

Douglas Smallwood, British Pain Society
Dr Mark Ritchie, GP, Swansea
Kevin Geddes, Director of Self Management with the Long Term Conditions Alliance in Scotland
Dr Martin Johnson, Royal College of General Practioners’ UK Champion in chronic pain; on the executive committee for the Pain Patient Pathways
Jean Smith, patient.

How to manage migraines: patients and experts share their thoughts

To listen to this programme, please click here.

Prefer a PDF?Download

Nine out of ten people report a lifetime history of head pain and 2012 has been designated the Global Year Against Headache by the International Association for the Study of Pain. Evans finds out more about migraines from Dr Giles Elrington of the National Migraine Centre in London.

We also hear from people who live with chronic migraine about their experiences, what triggers their episodes and the treatments they’ve tried, and Heather Sim tells us the steps to take to get referred to a migraine clinic.

Issues covered in this programme include: Migraines, headache, triggers, patient experiences, fatigue, nausea, neurological conditions, trigeminal autonomic cephalalgias, cluster headaches, neck pain, primary and secondary headache, daily routine, blood sugar, sleep pattern, diary keeping, referral, brain disorder and visual auras.

Paul Evans: Hello, I’m Paul Evans and welcome to Airing Pain, a programme brought to you by Pain Concern – the UK charity that provides information and support for those of us who live with pain. This edition is made possible by Pain Concern’s supporters and friends. More information on fundraising efforts is available on our Just Giving page, and that’s at painconcern.org.uk.

Keri Bucholz: I get very sensitive to smell and to lights. I get a pain behind the nose and behind the eyes…

Dr Giles Elrington: Is it a disorder of the mood, of the psyche? No.

Bucholz: And I get really tired…

Elrington: Is it a disorder of the neck? No.

Bucholz: After that, I usually get really nauseated. Then the headache will hit, and the pain that will come with it.

Elrington: Is it a disorder of the sinuses, of allergy, of the heart, the blood vessels? No, it’s a disorder of the brain.

Evans: Now this year, 2012, has been designated Global Year Against Headache by the International Association for the Study of Pain, working with the International Headache Society. And that’s quite appropriate because one in every two of us will have some form of headache during the year and a staggering nine out of ten will report a lifetime history of head pain, with the most severely disabled three per cent of those having chronic migraine and chronic tension-type headaches at least 15 days per month. And that makes it the most common of all neurological conditions and among the most frequent of complaints seen by GPs.

Chris Whitehouse: They go in phases and when they’re worse, they’re typically every other weekend or every weekend, occasionally. I’ll get up on a Saturday morning and I’ll fairly soon have a pretty bad headache which will mostly render me pretty incapable for the rest of the weekend and then it’ll clear up on the Sunday night and I’ll be up back off to work again. There’s also a stomach element – that I could feel a bit nauseous – and again if I think about that it’s not particularly extreme, mostly, although sometimes it causes me to throw up. I also sometimes feel very cold, so I’ll put on lots of clothes and sit leaning against the radiator. So the overall thing is that I feel completely drained of energy and I have no ability to actually get up and do something.

Evans: Now I was brought up to believe that a headache is just something we have to grin and bear, but a migraine, as described there by Chris Whitehouse, is something on an entirely different plane. So a few weeks ago I visited the National Migraine Centre in London, where I met its Medical Director, neurologist Dr Giles Elrington

Elrington: Headache is a symptom and I think that people go to doctors or pharmacists with a symptom, not with a diagnosis. Generally speaking, when things aren’t going right, the first thing you want to do is to go back to the start and rethink the diagnosis. So one of my big issues is to be symptom-focused, not diagnosis-focused. Having said that, almost all headache is migraine. There is an exception: there are a group of headaches called trigeminal autonomic cephalalgias, like cluster headache and I think most experts in the field think that that’s a separate disorder, but there is a maverick view, that might be right, that says it’s all on a continuum.

But if we set that aside, then there are basically two types of pain in the head. And if we just get this out of the way early on – doctors who practise in head pain call any feeling you don’t like above the shoulders ‘headache’. Not all patients like that: ‘It’s not a headache, doctor, it’s a pain in the head.’ It’s actually really unhelpful to get bogged down in words, so we call it all ‘headache’, whether it’s a sharp pain in the lip, or a compressing feeling all around the cranium, it’s all ‘headache’. Pain in the neck is a headache.

So, there are two types of headache: primary headache and secondary headache and, using a computing analogy, primary headache is a software problem and secondary headache is a hardware problem. So in primary headache, the disease is a change in the pain pathways, the electric activity of the pain nerves is switched on when there is no good reason for it to do so. It’s rather like the oil light in your car coming on when the sump is full, or the fire alarm going off when there’s no fire. So it’s giving you a message as if something is happening, but the problem is the message, not the thing it appears to be telling you.

Now, people worry when they have pain in the head, when they have headache, that there is a brain tumour or a trapped nerve or ‘Is it my neck, doctor? Is it my sinuses, is there some structural underlying cause?’ And the answer is ‘hardly ever’. And so the longer you have pain in the head, the less likely there is to be something else wrong, for there to be a hardware problem, something bust.

Another way of looking at it – with the secondary headache, you could make the diagnosis without talking to the patient if you did the right test. So you could see the sinusitis on a scan or an x-ray, with an endoscope, you could identify the trapped nerve with an electrical test or an MRI or something like that. But only a tiny minority of headache is the secondary headache, or a hardware problem, and the simple rule is that if you have a secondary headache, other stuff goes wrong apart from the pain. So if you have a brain tumour, which is often the big concern, the main symptom is epilepsy – hard to overlook. And then the other big group of symptoms with brain tumours is a progressive loss of function.

But if we then come back to what I largely practise in, which is primary headache, that is, an error in the way the brain deals with pain, migraine is the big group. Now you can use the word migraine in, really, two different ways. The old-fashioned way is to use migraine to describe the nature of the attack. But you can use the word also to describe the underlying condition, the tendency to migraine. So it’s a bit like having acne – you have a spot, a zit. But there are times when people with acne don’t have spots and zits, briefly – I remember well.

So you can use the word in different ways, and in many ways it doesn’t matter how you use the words, as long as we all stick to the same definition. But almost all recurring, chronic, disabling, troublesome headache is migraine. And most headache experts these days are not very keen on the old idea of so-called tension headache or tension-type headache as it became known and we see tension or tension-type headache as being a relatively featureless form of migraine.

Now there’s a lot that we can do to help migraine. Journalists often say, ‘Have you got a cure?’ I don’t think doctors cure very much. OK, I ‘m a neurologist and we have that reputation, but think about it, what can doctors cure? We can control a lot, and we can make an awful lot of things easier to bear.

Evans: OK, so I’m not going to ask you what the cure is.

Elrington: Thank you.

Evans: What is the management?

Elrington: OK, so the management of the migraine begins with the diagnosis.

Evans: Dr Giles Elrington, Medical Director of the National Migraine Centre in London. Chris Whitehouse again:

Whitehouse: I saw a doctor here, and he asked me a lot of questions about how it occurred and if I could think of things that caused it. He then explained in quite detail how migraines work and how triggers work and how you can help by learning your own triggers, which was really helpful. And he gave me some information sheets that I took away.

Evans: You said that you’ve been told to learn to recognise your triggers.

Whitehouse: Yes.

Evans: What were your triggers, how was that helpful?

Whitehouse: My main trigger is to do with sleep. And I’m not actually working now. But when I was working, typically I’d go to bed a little bit too late all through the week, so by Friday I was a bit tired and on the Saturday I’d have a bit of a major sleep-in. And it seemed to be weeks where I’d lived like that, followed by a particularly heavy sort of sleep, that would be then followed by the migraine. So that’s my main trigger. I also think that I have to be careful about eating sugar and actually certain types of cakes – I don’t know what ingredient it is, but there seem to be certain types of cake which seem to trigger it. It’s particularly the sleep thing that really triggers it, but I think I get more sensitive to them if I’ve been eating sweet things, so if I eat a lot of jam, or chocolate or something.

Elrington: Once you’ve made the diagnosis, the first step is lifestyle matters. Now what migraine likes is for the brain to be knowing what’s coming. It likes regularity, it likes rhythm, it doesn’t like surprises. So, people with… who are prone to migraine, need to have three meals, at least, every day. The one that many people skip is breakfast. Big mistake! ‘Oh I never skip breakfast, I have it after I get off the commuter train.’ Wrong! You must have a fibre-containing breakfast every day without fail before you leave home for work and you have something for lunch – just a sandwich or a roll is fine – and you have a meal in the evening. Snacks in between, terrific, but many of us struggle a little bit with our weight, so it’s important to keep that snacking down, keep it natural, keep to wholefoods, keep the fibre level up. Why fibre? Because you need to maintain a smooth blood sugar profile, rather than having big ups and downs through the day.

So the first thing in migraine is regularity, first think about the diet, then think about your sleeping pattern. So migraine is worsened by too much or too little sleep. Ideally, you need to leave the alarm clock on seven days a week, so every day is the same. My patients with migraine who suffer at weekends, as many of them do particularly, leave the alarm clock on, get out of bed at the same time, get shaved, get washed, get dressed, be at breakfast at the same time, maybe even at the time that you’re sitting at your desk, 9 o’ clock, possibly 8:30, at work, that’s the time you’re doing the crossword and you’ve got to finish it in 15 minutes, so you keep the stress levels the same.

Migraine is actually more often worsened by the let-down from stress than by the time the stress is on. Keep it level, don’t change it. And if you go, ’Oof, it’s the weekend, I can lie in, I can take it easy,’ that’s when the migraine come and hits your head.

The next thing is what treatment do you take as and when you have an attack? The simple treatments for migraine are either aspirin in a large dose, 900mg, or ibuprofen in a large dose, 600mg, preferably dissolved in water – and there are preparations of both which will do that – accompanied by an anti-sickness drug called domperidone. Not Dom Pérignon, which is French champagne, but it sounds almost the same and you can buy it over the counter and you can get a little packet of those. And you take two of those with either the aspirin or the domperidone [sic. editor’s note: ibuprofen]

‘Oh, but I don’t feel very sick.’ Just take the domperidone; the reason being to promote the brisk absorption of the drug because with gastric status in migraines, the drugs don’t get through. Add the domperidone, and if you do vomit you can have the domperidone as a suppository. Get the domperidone in and the aspirin and the ibuprofen. If that’s disappointing, there’s a class of drugs called triptans, there’s seven of them they’re all much of a muchness, different patients suit different ones, and you need to take them when you have the headache, and you take that once at the start. If it works well, fantastic. If the migraine creeps back after it’s worked you can take a second dose but you should not repeat the dose if the first dose hasn’t worked well.

The difficulty with acute treatment of migraine is the more you take a short term treatment, the more the migraine bounces back. So if you find that you’re having to take a short-term treatment to abort migraine twice a week or more, you should rethink your strategy and go for a preventative.

Always a good idea to keep a record, keep a diary of the migraines before you go on to preventative treatment and if you look on the Migraine Clinic website you will find lots of diaries you can download. But you can do it on an Excel spread sheet, or a piece of paper, but keep a diary or you won’t know if it’s changed, but it’s a medium-term strategy for at least three months, possibly a year. But you wouldn’t pack in preventative treatment before three months or you haven’t given it a chance.

There are many different drugs to try. You can try some nutraceuticals from the health food store, you can take drugs from the pharmacist, many of them and often they can work very well indeed. So where we’re going in the future is to treat the head, and the big interest in putting injections in and around the head – Botox, occipital nerve blocks, nerve-stimulating devices, possibly even magnetic or electrical stimulating devices – very experimental, but there’s an awful lot happening and we hope very much to have migraine a more treatable disease in the future than it is now.

Evans: Giles Elrington, Medical Director of the National Migraine Centre. He mentioned the word ‘nutraceutical’ – well that’s just two words put into one, from ’nutrition’ and ’pharmaceutical’, in other words, food products that reportedly provide health and medical benefits.

And now’s a good time for me to remind you that whilst we believe that information and opinions on Airing Pain are accurate and sound 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, Emma Williams is a patient at the National Migraine Centre. She had her first migraine at around the age of 13:

Emma Williams: I thought I was, like, dying of a brain tumour and nobody really understood. My mother didn’t really, she thought I was making it up, because my brother and sister don’t have them, they’d never seen anything like it, so it took her a while to actually take me to the GP. She thought I was using it as an excuse to kind of get out of things and that’s when I would go and lie down and be knocked out for hours because I’d have a horrible headache, and the visual impairment aura just really terrified me.

Evans: Can you just explain to me what the disorder is?

Wiliams: For me, I kind of, sometimes I draw them so I remember, or if I think there’s something specific to remember. It’s kind of like your vision is… if you think of it as a clock face, it’s like zig-zaggy lines, it’s almost like you’ve got water in your eye or something, or if you’re a lady, if you’ve worn, like, sparkly mascara, and then you’ve got a bit stuck on the inside of your eye, or if you’ve ever stood on the stage and had really bright light and it catches the edge of your contact lenses or something like that. It’s like that, it’s like you’re like, ’Oh is something…?’ It can be really beautiful actually, rainbow colours, for me, and it’s zigzag lines from the centre of, as it were, a clock face, and then it travels around clockwise.

So it sort of goes – sometimes it goes from light – and it can be left-hand side or right-hand side, so the doctor wanted to know exactly which, sort of, hemispheres it’s coming from. Is it left, is it right, does it move between the eyes? And then it can feel more, like, watery, like a sort of aqueous solution’s in your eye, and you can kind of, I don’t know, I feel slight pressure in my eye, not any pain. And then it moves around and then it fades away.

Giles Elrington: Aura is a very interesting part of migraine. And I think it’s aura that allows us first to realise that migraine is a disorder of the brain. But not everyone with migraine gets aura. The public often think that you have to have flashing lights, for example, for it to be a migraine and this is incorrect. Depending on how you divide your patients up, among people who have migraine, only about one in three, one in ten have aura.

You can get really bogged down in the argument whether migraine with aura and migraine without aura are the same or different diseases. It’s the same disease, I think, it’s just a question of how much bolt-on stuff there is. The odd thing is that we find changes on functional brain scans that are identical to what happen in aura, in people who don’t have aura. I think it’s all the same illness but I accept a range of opinion on that.

Now, migraine changes over time and one of the few advantages of getting older is you tend to get less headache with migraines. So migraine, migraine headache, all forms of migraine are less common in older than in younger people. Many people who start off having migraine with a visual aura, which is the commonest aura we recognise, will, over time retain the aura and lose the headache.

Williams: It’s like I can’t really see out of one eye properly, so I get that, and then if I lie down then I’ll get a headache, and a really bad one. But I learnt when I was about 21 that if I don’t lie down, I don’t get the headache, so I have an odd, medium half-migraine kind of thing. But they can happen really suddenly, and they can knock me out for about an hour of visual disturbance and then I feel a bit, sort of, groggy afterwards.

You do just want to go and lie down, because it just makes you feel really tired. But I’m learning that – especially recently, I’m sort of playing music when I get the visual disturbances if I can, and I learn to go into just a snooze, but not lie down. I prop myself up with beanbags, and I play very delicate music, sort of, really testing it, and I drift off, and I don’t get the headache, and then I wake up feeling quite refreshed in a way. I just think if I try and battle them, with the visual impairment I’ve never actually walked into a wall or anything but my sight is depleted, so might as well still down and deal with it, rather than get annoyed, as I maybe used to. And I think that’s more positive, because it’s almost like time out, it’s good, it’s like decompress. Why not, it’s happening so might as well make the most of it. And I get creative ideas as well when they happen so that’s good.

Evans: So you actually use the migraines for positive purposes?

Williams: I’m starting to now, yeah, I think. That doesn’t mean I want lots of them, but if your brain is doing something that’s physically making you feel so tired, but that can still be interpreted as a peaceful time, yeah.

Bucholz: My name is Keri Bucholz. I am a wife and a mother of two daughters, and a stay-at-home mum. I suffer from hemicrania-continua and migraine with or without aura.

Evans: Tell me something more about the hemicrania-continua.

Bucholz: I just recently found out about hemicrania-continua this year, coming to the clinic. My doctors back in the States have never even heard of it. I thought it was migraine on my left side, under my cheeks and sinus area and behind the eye. It would get bigger and more painful and then it would just go away, where it would just be a little bit of pain behind there, no big deal. It was just a constant pain behind the eye. The hemicrania-continua is under control now, I get migraines at least twice every couple of weeks.

Evans: And how long do they last?

Bucholz: They can last about two to three days. The worst of it is only about a day.

Evans: So, what we’re talking about, you get one of these once a week that lasts for three days.

Bucholz: Yes.

Evans: Well I don’t have to be a brilliant mathematician but it leaves four days per week where you feel well.

Bucholz: Yes, yes.

Evans: Now, how do you bring up two children and run a home, with only four days out of seven?

Bucholz: It has a big effect on the family. The unpredictability, I think, has been the hardest for my girls. Whether they have an activity and Mom’s planning on taking them, or Mom’s planning on being there, and then Mom can’t be there, that’s pretty tough on them. I think that’s the hardest part.

Evans: How do they cope with that?

Bucholz: I think the most important thing is talking so they’re not afraid when they see that Mom’s not feeling well. And then when I am feeling well, we enjoy going over…watching a video of what they’ve accomplished that I’ve missed, or things like that.

Evans: So, they absorb it into their lives and keep you up to date with what’s been going on these three days a week when you haven’t been able to cope.

Bucholz: Yes.

Evans: Explain to me how you got them to do that and what they do and what they tell you.

Bucholz: It started out chronologically keeping track of what they were doing at what age. There’s a programme called Hallmarks Mile Box. It’s easy for any age to turn in videos and things and turn it into a little programme that not only they can enjoy forever, but you can enjoy.

Evans: But it embraces the whole family, it’s the children being involved in your illness

Bucholz: Yes.

Evans: And contributing to the management of your illness.

Bucholz: Yes, I think there’s less tension, and less fear, and less worry when you can be in control of a little of something in life. And especially children need to be able to have that in their lives, to say, ’OK, maybe this isn’t normal for everyone but at least I know I can do this.’

Evans: Keri Bucholz.

Now, you’ll remember that Giles Elrington made a distinction between primary and secondary headaches. He used a computing analogy to describe primary headaches as a malfunction of the brain’s software and secondary as problems with the hardware.

Elrington: Let’s say that you have pain due to a toothache, so the tooth is doing something bad, that sends a message in the trigeminal nerve into the brain stem – the stalk of the cauliflower which is the brain, the trigeminal nucleus. The nerve relays there and passes on a slightly different message up a pathway in the brain stem and that goes to the thalamus which is, coming back to the cauliflower – it’s where you cut of the florets off the stalk – and then it goes on from thalamus up to the cortex, which is the white bit of the cauliflower and of the brain. What’s happening in migraine is it cuts out the first part, so there is no bad message coming in the trigeminal nerve, but there is a spontaneous generation of pain in the trigeminal nucleus.

Now, around that area there’s other stuff happening and as well as the generation of pain, there is the recruitment of messages to the stomach that make the stomach say, ’Let’s empty upwards rather than downwards today.’ It’s called vomiting, or nausea, so that’s recruited as well. Also you turn up the gain on messages from the ears and from the eyes, and from the balance mechanism, so movement makes you feel giddy and sick, vision is painful, lights hurt, noises hurt. It works on smell as well, so smell becomes unpleasant, the smell of cooking makes you want to vomit and the smell of chemicals makes the pain worse. So you can model migraine as an amplification disease, but also as the spontaneous generation of abnormal messages.

Now, that also projects up to the cortex of the brain, which is the most complex part, the bit that makes us different from all other animals. And there is a suppression of cortical activity which moves across the cortex in a wave, like a tsunami coming across, and that’s what gives you your visual aura, sometimes paralysis, speech difficulty, memory difficulty, stuff like that. So it’s in peril within the nervous system, but it is an important matter, this is where we’re at with understanding migraine. Is it a disorder of the mood, of the psyche? No. Is it a disorder of the neck? No. Is it a disorder of the sinuses, of allergy, of the heart, of the blood vessels? No, it’s a disorder of the brain. I’m a neurologist, am I biased? Possibly.

Evans: Giles Elrington, Medical Director of the National Migraine Centre, which is a charity to treat people with headache, but also to carry out research and to provide education to health care professionals. It used to be known as the City of London Migraine Clinic. The name changed to emphasise its national status. So how does one get referred to the National Migraine Centre? Heather Sim is its chief executive.

Heather Sim: The majority of people actually self-refer. Some of them who come through as ’self-referred’, in inverted commas, are actually referred by the GP but the GP shows them our website and tells them about us and then they ring up themselves which saves the GP writing a letter. All the patients that come and see us have a full report written that’s sent to the GP and a copy given to the patient. And the GPs like the service because they get a lot of information back and some of them have reported that they’ve learnt a lot about managing headache from the reports we send back with the patients.

Evans: How much does a referral cost?

Sim: We’re a charity, so we don’t actually charge patients as such. We do have private patients and there is a private patient fee which at the moment is £250 for a first appointment and £175 for a follow-on. We also, if people have private health insurance, they can be seen through their private health insurance. But they have to ring up and get the agreement from the private health insurance first and they pay the money to us and then they reclaim it.

The majority of patients are seen through the charitable route which, because we nearly closed two years ago through lack of funds, we share with the patients when they book that the cost to deliver the service to them is in the region of £208 for the first appointment and £104 for the follow-on. We say, if you can cover the core costs, that’s fantastic, however, if not we have a suggested minimum donation of £100 each time people come. But if people are on low income or unemployed, that they can just come along and give what they can and remember us when they get a job.

Elrington: If I have a criticism of my colleagues, I think there’s an over-concern about secondary headache. So there’s a great tendency when you go to a neurologist with headache to acknowledge this and say ‘take this very seriously’. And you do a brain scan and the patient’s frightfully pleased it’s being taken seriously at last. And so off they go and have their scan and they come back, ‘What does the scan show, doctor?’ ‘I’m very pleased to say the scan’s normal’. And the patient’s so relieved, they’re out of the room before they think of the proper question: ’OK, so what are you going to do about the headache?’

So where we are, in this clinic particularly, is in symptom control. And I think it’s very important to say to the patient, ’What’s your main symptom?’ Sometimes people say, understandably, ‘I just want to feel well’, and then you have to dig into that and say, ’Well, of all the symptoms you have, which is the one, if I could make that go away, it would have the biggest impact on your life?’

And often it’s not just the pain – often it’s the fear of attacks, and many of the patients with migraine – which is in most people an episodic disorder, the minority is chronic and persistent but mostly it’s episodic – a lot of my patients have simply stopped agreeing to do things in their life because they’re fed up of having to cancel and they live a very sheltered and rather boring life. So the fear of attacks is very important.

I have a big problem with patients who are so devoted to their work that they will bang on taking short-term treatments that will actually make things worse in the long-term because they can’t bear to take the time off work. For heaven’s sake, take some time off, get it sorted, then go back to work when you’re better.

Evans: Giles Elrington, Medical Director of the National Migraine Centre. And their web address for further information is NationalMigraineCentre.org.uk, that’s NationalMigraineCentre – no gaps – NationalMigraineCentre.org.uk.

Now before we end this edition of Airing Pain don’t forget that if you’d like to put a question to Pain Concern’s panel of experts or make a comment about these programmes, then please do via our blog, message board, email, Facebook, Twitter or even pen and paper. All the contact details are at our website which is painconcern.org.uk and from there you can also download this and all previous editions of Airing Pain. I’ll end this edition with Keri Bucholz and Emma Williams.

Williams: Just because you have migraine, don’t think it can control your life because it can really feel like it does, and I know mine are mild but even for me I would notice such a difference in self-esteem. If you feel that someone has heard you and understood, and just chatting to other people that have had it, and they don’t think that when you’re having aura you’re, sort of, drunk or… because sometimes it can come across as that, or you’re being really odd or quiet, because I go very quiet when I have one. Many just sit and suffer in silence. Don’t do that, please come and find more information, it’s really important.

Evans: What advice would you give people like you, young mothers who have migraines, trying to bring up families, trying to keep a home together?

Bucholz: Go easy on yourself. I mean, be gentle with yourself, don’t get overly frustrated with the things you can’t do. Enjoy the things that you can do. And it takes times to figure out what’s going on when you have any pain disorder, it takes a lot of time so don’t get discouraged, and enjoy those relationships with your family, and communicate and talk to others about it, because you’ll find that you’re not the only one out there that has migraines and also you’ll find it’ll help ease a lot of things in your family.

Contributors:

Dr Giles Elrington, Medical Director, National Migraine Centre, London
Heather Sim, Chief Executive of The National Migraine Centre
Patients including: Keri Bucholz, Emma Williams and Chris Whitehouse.

How to manage migraines: patients and experts share their thoughts.

This programme was funded by Pain Concern’s supporters and friends.

Nine out of ten people report a lifetime history of head pain and 2012 has been designated the Global Year Against Headache by the International Association of the Study of Pain. Paul Evans finds out more about migraines from Dr Giles Elrington of the National Migraine Centre in London. We also hear from people who live with chronic migraine about their experiences, what triggers their episodes and the treatments they’ve tried, and Heather Sim tells us the steps to take to get referred to a migraine clinic.

Contributors:

Dr Giles Elrington, Medical Director, National Migraine Centre, London
Heather Sim, Chief Executive of The National Migraine Centre
Patients including: Keri Bucholz, Emma Williams and Chris Whitehouse.

How swimming can help manage pain, and a Q&A session with physiotherapist Paul Cameron

To listen to this programme, please click here.

Prefer a PDF?Download

Paul Evans takes the plunge with Daphne Wood of Pain and Able to find out more about how swimming combined with the Alexander technique can help people with persistent pain conditions. Physiotherapist and Pain Concern expert advisor Paul Cameron answers listeners’ questions on issues from dehydrated spinal discs to losing weight to reduce pain.

Issues covered in this programme include: Exercise, swimming, the Alexander technique, awareness of habit, dehydrated spinal disc, weight loss, joint pain, catastrophising, flare-up, osteoarthritis and breathing technique.

Paul Evans: Hello, I’m Paul Evans and welcome to Airing Pain. A programme brought to you by Pain Concern; the UK charity that provides information and support for those of us who live with pain. This edition has been funded by the generosity of Pain Concern’s supporters and friends and by an educational grant from Grünenthal.

Daphne Wood: The way the water almost responds to us and responds to the little changes we make – it’s almost like being with a very benevolent friend because it has really given me something that I can do for myself, which is beneficial in terms of pain management. Almost no matter how bad my back has been at times, I am able to at least go and glide and stand up and feel better for it.

Evans: And I will be taking the plunge to find out just how responsive the water is to me later in the programme. But you will know by now that one of our aims on Airing Pain is to answer questions you have put to us at Pain Concern. We have an advisory board of leading health professionals and experts in pain management to guide you. But do remember, that whilst we believe the information and opinions on Airing Pain are accurate and sound, 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.

Well, Paul Cameron is one of our experts. He is a pain specialist physiotherapist and a PhD research student at the Centre of Primary Care at Aberdeen University. He also delivers the community-based Rivers Pain Management Programme in the East of Fife. Here’s his first question: ‘I am 20 years old and have been diagnosed with dehydrated discs. I am currently on a lot of medication and have been for the last two years. I’ve done physio, epidurals, acupuncture and I have recently had a massive flare up. I am in so much pain, I just don’t know what to do. I use TENS machines and heat pads – nothing works.’ …Paul?

Paul Cameron: That would be your typical, I suppose, complex patient caught in the chronic pain cycle, if you like. Obviously, I don’t know that patient’s specific details but, in general, I would say that, what you have painted a picture of there is a chronic pain patient, someone who is very anxious now, is in a lot of pain, has flare ups, worries about the future – ‘catastrophising’, we would call that possibly. We would approach that in a way that would be looking at that person’s self-management, looking at ways they can progress their life – they are only 20 years old – they have their whole life ahead of them and if they get caught in that cycle of thinking there is no future for them, there is no way ahead – it is just going to be a life of pain. I can only imagine what that must be like and I imagine it would be terrible.

So for that 20 year old, we would be looking at ways to, again, using all the professions involved in a pain team, for example, and the GP, to minimize their pain as much as possible and that is firstly through adequate pain control. Secondly, it’s about getting moving as well and actually educating them. We find that education of patients is a huge thing, because you do get a lot of terminology expressed by patients and usually there are a lot of misconceptions, there is a lot of worry – they have heard things like crumbling discs, wear and tear and we dispel those myths and explain exactly what these things mean.

We also educate them in the actual strength of, for example, the spine, the strength of the spine – just how mobile it is and all the structures involved – and what we mean when we are talking about things like dehydrated discs and what that means for the future as well. All those things combine and I would say particularly the education allows the patient to progress, I think. It allows them to remove the fear and reduce the anxiety. Through the reduction of anxiety and the increase of movement – we are not talking of running a marathon, we are just talking about movement, then we do find that the patient’s pain can reduce to a point where they can function better and that allows them to start living with pain, without them being controlled by the pain.

Evans: You use the word ‘catastrophising’. Now I know what a catastrophe is, so what do you mean by catastrophising?

Cameron: Catastrophising is where a patient – or anyone – may be told, for example, a diagnosis that they have wear and tear or they have a flare up and their response to that flare up is ‘well that’s it’ – their life is over, they have to give up work, they are not going to be able to work again, they are not going to be able to partake in the sports that they enjoy ever again… They turn that element of the symptom, internalize it and catastrophise and it does sort of affect their whole life in that way.

Evans: So somebody tells me I have a bad knee – I think that’s a wheelchair at the very best, housebound, my life is now over. Imagining the very worst instead of how things could be good?

Cameron: Yes. A practical example may be, for example, a person who enjoys golf and then has a flare up of back pain and they give up golf completely. They don’t think about reducing the number of holes they play; they don’t think about going down to the driving range; they don’t think about the social side that they enjoyed in the club house; and they withdraw themselves into the house and that is their life – they have removed themselves from something they very much enjoyed. That would be catastrophising.

So, you can see how those sort of thoughts not only affect the pain, but affect their whole life, their social circle, their friends or family – so it is a big element to them. For that particular patient you mentioned, just 20 years old with their whole life ahead of them and, actually, equally, a 90 year old thinking exactly the same way – it’s not a good place to be.

Evans: Many thanks and we will be returning to Paul Cameron to answer more of your questions later in the programme.

Now, don’t forget, we can’t talk about specific cases, but you remember him saying that an increase in movement can reduce pain – well, swimming is often recommended as being beneficial to people with chronic pain conditions. However, as in all exercise activities, swimming with poor technique can result in strained muscles and joints.

Daphne Wood of Pain and Able swims to help manage her own chronic pain. She is a qualified teacher of the Shaw method which applies principles of the Alexander technique to swimming. So, speedos in hand I met her at the Ozone Health & Fitness Club in London’s Kings Cross at the Bloomsbury Holiday Inn to find out what kinds of persistent pain conditions her swimming lessons could help with.

[Background sounds of swimming pool]

Daphne Wood: Whatever doesn’t need any sort of acute treatment, really – some people come as part of rehabilitation, so following surgery or accidents; others who would perhaps have been to something like a pain management programme and have been advised to do exercise but perhaps find the high impact exercise a bit difficult or who just want to enjoy swimming as part of pain management.

Evans: Well, from my point of view, I have had fibromyalgia for about 22 years. I have a lot of aching, a lot of pain, I was a very good swimmer, a very strong swimmer. [Wood: Right.] I try to swim and it’s a boom and bust scenario. I enjoy it too much, it’s going too well and I suffer afterwards. [Wood: Right.] Perhaps you can help me get through this.

Wood: Yes, I think one of the things that I would – even without seeing you in the water – is say is that the general pain management principles apply to swimming as much as anything else – that you need to pace up slowly. And so after today’s lesson which will be quite gentle, you would need to look at how you feel a couple of days after that and, if that seemed fine, then you continue at that level for a while.

Evans: The problems I get with swimming are keeping my head above water because I need to breathe. I get a lot of strain in the back of my neck and my shoulders.

Wood: That’s a crucial thing that we will be looking at today. Part of my approach is about applying principles of Alexander technique to swimming, so, I believe that the relationship between your head, neck and back is crucial for effective movement and if you are holding your head out of the water and tightening muscles at the back of your neck that has an adverse effect on movement. Also, if you are trying to float with your head out of the water, it means that you tend to sink because your head is above, pushing your body down.

So there is not really any way around learning to negotiate putting your head in the water, which is in fact a lot easier than most people believe. Many people who come for lessons are in fact really annoyed to find out how easy it was and that there has been this kind of mystery. Shall I tell you what we will be doing, before we get in the water?

Evans: Yes, please.

Wood: OK, two things to remember: one is to attempt never to hold your breath when you put your face in and the other thing is to blow out gently through your mouth whenever your face is in the water. So what we will be doing, is standing over there in the pool, feet firmly on the ground, you will start an out breath from before you put your face in and we will work on trying to keep the out breadth continuous until you back out of the water.

Evans: I am not afraid of getting my face wet. The point I was making is that you have to come out to breathe some time.

Wood: Yes, and that comes later in the stroke. The way we work is that, initially I work on people being comfortable, just walking in the water, putting their face in and then learning how to glide, so that you can have a strong sense of – even if you forget what to do with your arms and your legs, what to do with a stroke – you would be able to stand up and take another breath. Then, once, the sort of anxiety of ‘what do I do if I run out of breath or forget what to do with my arms and legs’ – once that is allayed, then you can relax and can think of how to move your arms and your legs.

Evans: Before we met and when we had arranged this, I said to myself, ‘I don’t need Daphne to teach me to swim, I’ve been doing this for 52 years; what I need Daphne to do is to teach me not to swim so much.’

Wood: Right, yes, that’s a lot of what I do. One of the crucial things that people need to learn – and I think that probably has bearing on those of us who tend to have strain and things – is when to use effort and not to use effort. It is really important to know, for example, in front crawl, you press back for a bit but then you let your arm go. And that release doesn’t only give some relief to the muscles and joints, but it also allows the effort to happen better. Or in breast stroke legs, if you pull your legs back in a tight way, you can’t kick back nearly as well as if you start with relaxed legs.

So that, sort of stroke by stroke, is something, but in terms of swimming less – a huge amount of what I am doing is about paying attention to each stroke, rather than I must go and do my twenty lengths. And when you do that, you begin to notice the difference it makes, if, for example, if you hold your hands in a softer way – the swimming then becomes a process of discovery and exploration and you learn things and you come out and you know more about yourself than when you went in. So it is not that you just tick it off because you have done your twenty lengths – it should actually be quite enjoyable and experimental.

Evans: Come on then, let’s do it.

Wood: OK! Let’s get in. You’ll need your goggles.

Evans: Daphne Wood of Pain and Able. Now whilst I run off and get my goggles, I want to try and get some answers to a few more of your questions from physiotherapist Paul Cameron. Actually, swimming may be relevant to this next question – he says his doctors have told him he will be in less pain if he loses weight – why?

Cameron: Right, OK. Obviously – again, not knowing that particular patient’s circumstances – I would say that, obviously, loss of weight is healthy for a number of reasons, if you are particularly overweight – not just for pain reasons but for other health reasons as well. If we are talking about particular joint pains, then, yes, that could relieve some of the weight off the joint and obviously anything that reduces weight of the joint may reduce or help reduce the pain in a joint as well.

It is a very difficult one to say really, because there are a lot of people who are overweight with no pain and you wonder why they have no pain, if just losing weight was the answer. I would say that yes, weight is maybe a consideration for people who are overweight with joint pain and it may help them – there are no guarantees, but certainly from an overall health perspective, yes, losing weight and being that little bit healthier, and happier with it possibly, may actually help reduce the pain anyway.

Evans: I suppose – we don’t know what sort of weight this person is, although I am sure this applies to thousands of people, maybe me as well – the laws of physics say that if I have a problem with my knees and I am carrying five stone extra on them and possibly my centre of balance has shifted forward because of my enormous gut, then the laws of physics say something has to give.

Cameron: Yeah, I would agree. So a caveat to that would be that you don’t gain weight overnight, so it’s not a sudden change to your joints and equally you don’t lose it overnight either, so, again, it wouldn’t be a sudden change to your joints either. None of these things are quick fixes – they are just one element of a whole scenario of pain management. So, yes, excess weight may cause excess strain on a joint which may – and I say ‘may’, because we don’t fully understand everything about the pain mechanism, so it’s difficult to say yes for sure – but, certainly, we do have patients who lose weight and feel better for it and if we were to use those patients as an example, then yes losing weight may help.

Evans: Here’s quite a complex question from a correspondent: ‘I am 47 and my knees are causing me agony. X-ray and MRI have revealed nothing. I am taking six to eight painkillers a day which make me tired and irritable but help with the severity of the pain. I suffer from joint pains too, mostly in the morning. Rheumatoid arthritis has been ruled out and they are saying I have osteoarthritis and, if so, I just have to live with the joint pain. However, it’s my knee that is unbearable and mostly on the outside. A specialist is contacting my GP to recommend stronger painkillers!! I’d appreciate some advice.’

Cameron: The first thing I wouldn’t do is talk about specific medication anyway, but I would advise that particular patient to return to their GP and have that discussion about their pain control – they have mentioned some side effects they are getting from their pain analgesia and obviously, that would be an area that a pharmacist or a GP would be an expert in those areas – so they’re the ones that really should be sitting with that patient and having that discussion. I would advise that to any patient who is worried about medication.

Yes, we have a limited number of pain medications, to be honest, and research is always being carried out to try and improve that. But that doesn’t mean that there isn’t scope for change, there isn’t scope for allowing a patient to be a bit more finely tuned with their own pain medication, because everyone will respond differently. But, again, it would be a conversation to have with your GP or a clinical pharmacist, who would be able to assist with that as well.

Evans: Physiotherapist, Paul Cameron. And if you would like to put a question to our panel of experts or just make a comment about these programmes, then please do so via our blog, message board, email, Facebook, twitter or even good old fashioned pen and paper. All the contact details are at our website, painconcern.org.uk and from there you can download all previous editions of Airing Pain along with a host of information of how to manage your pain. Now back to the pool – where, suitably goggled, I’m ready to take the plunge with Daphne Wood of Pain and Able.

[Background sounds of swimming pool]

Wood: What I would like to start with is just walking to as deep as you are comfortable, with left arm forward, right leg forward and then swapping over – in other words opposite arm and opposite leg. This is partly about arriving in the pool, getting your body to obey your brain, before we start the more complicated things, so it is quite simple but in a way it helps us both catch up with ourselves in the water.

[back in the studio]

Wood: Being aware of how you swim and swimming with good technique can really be an effective way of helping manage chronic pain. And it may be that there are people who do swim, but they swim holding a lot of tension, or they keep their heads out of the water or something like that.

Evans: Because people who can swim, swim naturally – most of them have been swimming for most of their lives. They have picked up habits of the best way to swim for all of those lives.

Wood: That’s right, yes. And some of those are based on, focusing mainly on getting across the pool ideally without taking a breath or purely on speed, which is fine and I’m not knocking that sort of swimming for people who don’t have any difficulties. But if, people do start experiencing increased pain, for example, after swimming, maybe knee pain after doing the breast stroke or shoulder pain after doing front crawl, then there are things we can address to make the swimming more satisfying and more beneficial.

[Background sounds of swimming pool]

Wood: OK, we are going to have a go now at the breathing, are you OK about that?

Evans: Yes, yes.

Wood: Put your goggles on please. Lean towards the wall, leaning into the wall with your fingertips underneath the surface of the water.

Evans: My chin is just above the water line.

Wood: Yah.

Evans: Now I’ll nod my head. In fact, I’m going to stop talking as well [laughing]. I’m just going to nod my head – do I put my face under water?

Wood: Not your whole face yet – until you get used to… the crucial thing is to keep the out breath continuous.

[back in the studio, absence of background swimming pool sounds]

Evans: You were concentrating while I was in the water with me breathing correctly and breathing under water – what was the purpose of that?

Wood: We started with the breathing because, if you are not able to put your head in facing the bottom of the pool and negotiate the breathing easily, you won’t be able to get a good floating position in the water. If you have to hold your breath in order to put your face in, that creates quite a lot of tension and what most people do then, is hold on for as long as possible and come up gasping – sometimes they judge it right and it works – sometimes they get water in and then they cough and splutter. So we do that first standing by the side of the pool so that there are no other factors that you are worrying about. Your feet remain firmly on the floor so that you can give all your attention to just keeping the out breath constant as you roll your face into the water and come out still blowing out and then take another breath. After that, once you can prioritise the breathing, then we can start working on legs coming on and keeping the breathing going.

[Background sounds of swimming pool]

Evans: So what I was doing there, I was just let my head float?

Wood: Yes, yes, could you feel that it doesn’t just sort of keep going down? [Evans: No, that’s right.] There is a point where, it is pushed up a little bit.

Evans: Yes, yes, it’s not because my head is too full of air [laughing].

Wood: No, most people’s heads do this, so you are fine [laughing]. Try that again, just sort of feel how that is quite a strong pushing up really.

All Shaw method teachers have had all the traditional sort of swimming teacher training. I have had an additional one year of training in applying Alexander technique to swimming.

Evans: Forget about the swimming for a minute, what is Alexander technique?

Wood: It is difficult to sum it up, but through Alexander lessons, you become more aware of your habitual ways of moving, holding your body. So it’s partly awareness of habits. It’s a recognition that the way we think and feel affects the way we move. Another one of the principles is about not end-gaming: not just focusing on the end of the pool but paying attention to each stroke, the means whereby we get to the end of the pool. And there’s a rather elusive concept called direction which on dry land, you would be thinking up…

Evans: What do you mean by ‘thinking up’?

Wood: Thinking up – it’s just the sense of… looking at runners – and thinking is their attention on going up or on going down? And you can actually get a sense of that, if you look at people running. Another example of going up that I experienced was in a very grey English winter when I suddenly got given an air ticket to go to a nice sunny country and I noticed that my walking changed. I just did literally get that more bounce in my step. The prospect of going somewhere sunny changed my mood and changed the way I moved and that was in a sort of upward direction which is like the opposite of depressed. I think there are reasons why there are these words in our culture.

Evans: The way it was explained to me when I went through a course of Alexander technique was that ‘thinking up’ is like having a hook at the back of your head from which your body suspends and comes into alignment but not you pushing your head up.

Wood: Exactly, yes, that is really good – it brings together both the thinking up and the fact that you don’t actively push yourself up – it’s something that by thinking or the awareness of it allows it to happen.

[Background sounds of swimming pool]

Wood: I am going to talk a little bit about direction now. In swimming the going up translates into going forward. A lot of good swimming is thinking about what you are doing and in particular in the glide. We are going to experiment now, thinking of sending your arms and head forward so don’t worry about your legs or whether you are floating, just think of going forward, forward, forward with your arms and head.

[back in the studio, absence of background swimming pool sounds]

Evans: You were teaching me how to actually use my body shape, my natural body shape to do all the work, minimising the use of my muscles.

Wood: That’s an interesting way of describing it. I mean what we were certainly working on is seeing how much can be achieved by doing very little in water, simply by leaning forward, thinking forward through your arms and thinking of your head going forward and adjusting the position of your arms and that so that you get a good buoyant experience in the water that didn’t require any pushing off or kicking or anything. And you were able then to get some momentum and go forward in the water, yeah.

Evans: To me, that’s not swimming.

Wood: No.

Evans: That’s being in the water.

Wood: Yes, you swim by first of all becoming comfortable in the water, knowing that you can manage the breathing, knowing that you aren’t holding unnecessary tension. We looked, for example, at how the position of your arms affects the degree of strain in your lower back; how your head position can really make a difference to how your neck and shoulders feel. So, we get a good foundation laid, which is being able to breathe comfortably, glide, stand up, realise that the water is supporting you, have some experience of buoyancy… Once that is all taken care of, then you can give your full attention to ‘how do I need to move my arms? How should I kick my legs?’ You aren’t battling with survival at the same time. And I think it’s really important to explore buoyancy and to know what happens when you do very little in water, to know that you can float and then, from there, move on to learning a stroke.

Evans: And the interesting thing as well that I found is that by systematically going through different parts of my body, if you like – my head, my breathing, my legs, my hands – the angle of my hands in the water – you made me notice what my muscles were doing and how changing position could alter the way those muscles were working.

Wood: Exactly, yes. And you see those kind of observations that you made come much easier when we reduce how much you are doing – it’s unlikely when you are aiming for the end of the pool that you pay much attention to those, rather subtle things, but which are really going to affect how your body feels after a good swim.

[Background sounds of swimming pool]

Wood: … that’s lovely. I think it’s time to just look at how you stand up because there’s something very wise in the back of our heads which won’t let you float comfortably unless you are very clear about how you are going to get your feet back on the ground and how you are going to breathe. Now, the reflex way that people often do it, is to snatch their head out, OK? If you do that, if you come up head first from the horizontal, you are immediately tensing all these muscles, you can hear it even in my voice and you feel as though you can’t breathe…

[back in the studio]

Evans: In terms of pain management for people who come to you, how do you assess what they can do and what they can’t do?

Wood: Often they will come for their first lesson, having not been in the pool for a long time but as you saw in the first lesson, the approach is very gentle. It’s quite challenging, if anything – it’s more mentally demanding and it’s more about the awareness of trying to think about what you are doing about your breathing and your feet and your arms. It’s more that than physically needing to swim up and down.

So, very often, the physical side of it isn’t that taxing. Then we would certainly speak the next time about how they felt after that and there’s always a chance at the beginning of the lesson to look at any issues that have arisen. Sometimes just the joy of being in water means that somebody will then go to an aqua-aerobics class after my lesson and say ‘I felt dreadful’. And in fact it’s that they have just gone on and done a lot more. But I have rarely had any big problems in terms of pain after the lessons, if anything, the relief of being able to move and the kind of movements we do often leaves people feeling more relaxed and in less pain.

Evans: What I found today is that I could actually go to my pool and use the water therapeutically and for enjoyment without having to crease myself.

Wood: Yes, that’s brilliant and if you found that today, then I’m delighted.

Evans: And I’m delighted too. So that’s Daphne Wood of Pain and Able. She’s based in London and you can get more information about her lessons at her website which is painandable.com. And there are teachers of the Shaw method throughout the UK, details of which can be found at artofswimming.com. The last word to Daphne:

Wood: A lot of our habitual ways of approaching life don’t work in water. Very often, on a day to day basis, I have thought that trying hard was the way to succeed – in water it really doesn’t work and over and over, when people, do less, try less, allow things to happen, allow the water to support them, that’s when the actual good swimming results. So water also is this wonderful medium which can give us another sort of sense of life and how things happen and take away some of the pressure of trying hard and things having to hurt and be difficult to do us any good or succeed.

Contributors:

Daphne Wood, Pain and Able
Paul Cameron, Pain Specialist Physiotherapist, NHS Fife.

How swimming can help manage pain, and a Q&A session with physiotherapist Paul Cameron.

This programme was funded by Pain Concern’s supporters and friends, and an educational grant from Grünenthal.

Paul Evans takes the plunge with Daphne Wood of Pain and Able to find out more about how swimming combined with the Alexander Technique can help people with persistent pain conditions. Physiotherapist and Pain Concern expert advisor Paul Cameron answers listeners’ questions on issues from dehydrated spinal discs to losing weight to reduce pain.

Contributors:

Daphne Wood, Pain and Able
Paul Cameron, Pain Specialist Physiotherapist, NHS Fife.

Understanding regional pain syndrome, and treating phantom limbs with mirrors

To listen to this programme, please click here.

Prefer a PDF?Download

Paul Evans talks to Sunny Boshoff about her experience of complex regional pain syndrome and learns more about the causes of the condition from Dr Bill Macrae. We also hear from him and Dr Joan Hester about their work counselling and treating patients requiring limb amputations, including the use of the Visual Feedback Mirror to help those who have phantom sensations in their amputated limb.

Issues covered in this programme include: CRPS, complex regional pain syndrome, phantom limb pain, amputation, mirror therapy, nerve injury, hot and cold pain, exercise, post-surgical pain, neuropathic pain, Gabapentinoids, antiepileptic drugs, brain signals, prosthesis technology, psychological process and visual feedback.

Paul Evans: Hello and welcome to Airing Pain, the programme brought to you by Pain Concern, the UK charity that provides information and support for those of us living with pain. This edition is made possible by a grant from Astellas Pharma.

Joan Hester: Many patients have sometimes pleaded to have a limb amputated because of the pain. Sometimes it is not appropriate to do that and they find it very difficult to understand why the pain won’t go.

Bill Macrae: It baffles me that the medical profession and, I must say, the public in general seem to ignore the subject. There seems to be some barrier to recognising that losing a limb can lead to pain.

Evans: We will return to that later in the programme. But first to a condition that we know very little about. It is difficult to diagnose and causes extreme pain and distress.

Sunny Boshoff: I am Sunny Boshoff and after a nasty accident, in which I had a crushed injury to my right hand, I developed a condition called ‘complex regional pain syndrome’, which is otherwise known as ‘reflex sympathetic dystrophy’ or ‘RSD’, or ‘CRPS’. If you imagine toothache in the kind of… like a really bad abscess or something in your tooth and the sort of intensity of that kind of pain, if you can imagine that in your whole arm, day and night, for the foreseeable future – that is the kind of pain you will get with CRPS. It ranges from being incredibly hot, to freezing cold, to feeling as though somebody is pouring boiling water over your skin and then holding it in a draft, holding your burned hand in a draft. So, it is very complicated, the kind of pains that you get with it. There are layers of pain as well. You will get deep pains in your bones, in your muscles, in your tendons and then you will have this pain on your skin.

Evans: Did you get a clear diagnosis of what it was?

Boshoff: No. I think I got the first diagnosis… it was about a month after. What happened, though, was I kept going back to the hospital and saying, ‘My cast is too tight. I am in agony, my cast is too tight’, because that is what it felt like and my hand was very swollen. But people kept looking at it and saying, ‘No, it’s fine, you know, it’s fine.’ And I was thinking: ‘It can’t be fine; everyone else is sitting around here with casts on and they are not crying’, and I was in agony.

Evans: So, what did they do about it?

Boshoff: Well, I mean the thing you have got to do, is just keep your limb moving. I mean, really, that was the thing that they were doing. And I said to the occupational therapist, ‘Why didn’t you tell me?’ She said, ‘We were doing everything that we could do anyway and some people get really frightened if they have that diagnosis.’ She just said, you know, ‘It’s going to hurt you, but you’ve got to keep on moving, you’ve to got to keep… that is the only way you are going to overcome this.’ I mean I still do it. That was in 2007. I still exercise my hand every day, with an exercise ball. I wake up in the middle of the night and I exercise it. I am constantly working on it.

Evans: Do you still have it?

Boshof: I am not sure that it goes away. Because I have to tell you that, I had another accident about 15 months after I had got control of the CRPS and I broke both my wrists. I tripped over a small hooped fence in a park. My left hand appeared to be suffering the same sort of shooting pains in exactly the mirror spots to the other hand, you know the CRPS. But it was an injury to my wrist which was really strange that I should be having the same pains. And I went to see an osteopath, who I had been seeing for the CRPS, and he did a lot of cranial work with me that day, and by the time I had got back home, the swelling had gone down, the pains had stopped and they never returned.

Evans: Do you know what causes CRPS?

Boshoff: The experts will say they don’t really know what causes it. It’s as though your nerves have been scrambled. The neurological messages that are going to your brain are scrambled. The nerves are just sending off these signals and they are scrambled and so you are getting a signal which is saying, ‘boiling hot’, ‘freezing cold’, you know, all these mixed messages.

Evans: Sunny Boshoff’s pain started from a crush injury, but some people develop persistent pain following an operation. It is not necessarily related to the original condition or even to any failure in the surgery.

Doctor Bill Macrae worked in the pain service at Ninewells Hospital, Dundee.

Macrae: In Scotland and the North of England in the 1990s we did a series of studies on the epidemiology of pain and we found to our great surprise that about 11 per cent of patients coming to pain clinics said that surgery was one of the causes of their pain, and another 11 per cent, they said that it was the cause of their pain. So 22 per cent of people were incriminating surgery as a cause of their pain.

Evans: That is quite worrying is it not, that people have surgery to get rid of an injury, or an illness and they come away with something possibly far worse?

Macrae: Yes, and particularly if, for example, you are a man who has an asymptomatic hernia – so you have a hernia, you have got a bulge – but it is not causing you any problems and you go and see your GP who says, ‘Oh we can get that fixed for you.’ You go and have a hernia repair operation and you end up with chronic pain and you did not have pain beforehand. And, you know, that hernia was not life-threatening. So you did not have to have that operation. The latest studies from probably the world’s leading centre on this in Denmark would suggest somewhere between 5 and 10 per cent of men having hernia repairs have chronic pain afterwards.

Evans: So, what is going on there?

Macrae: Well, nothing has gone wrong. I think there is something that is extremely important to flag up. The original paper in which we showed these 22 per cent of people who had pain after surgery, what we also showed was that 18 per cent of people coming to pain clinics had pain out of injuries – all sorts of injuries – and this has been shown in subsequent studies as well. So, injury often causes long term pain. And if you look at this from an evolutionary point of view, then it makes sense if an animal is injured – say it breaks its leg – it makes sense for it to be painful afterwards, because then it is going to rest and the process of healing can take place. So, having pain after an injury is obviously a good thing, because otherwise if you keep walking on your broken leg it is never going to heal.

Evans: It has a purpose?

McRae: It has a purpose. But, the way it works – why your leg is sore the day after your injury – is not connected, say, to the broken bone; it is because the nerves to that area have wound up, they have turned up the volume and the whole area has become much, much more sensitive. And that state of heightened sensitivity normally lasts for a period of time related to the healing of the injury.

So, in some cases, not all, but in some cases, certainly after an injury or an operation, it may be that what you have, is the nervous system that winds up and becomes sensitised by the injury, but then it does not wind down again after the healing. So you end up with a healed injury if you like – broken bone or wound from the operation or whatever – but your nervous system to that area is still wound up, so the slightest thing is going to cause you pain. If you think of it like a volume control and in fact we know that there are volume controls in the nervous system – both at the periphery, if you like, at the skin of the surface of the bone, but also in your spinal cord where the nerve has its first relay going up to the brain. There are volume controls throughout the nervous system and if these get turned up and then they don’t turn down again, you can see how that might cause chronic pain.

Evans: So, how do you turn them down?

Macrae: Well, there are drug therapies that will help and the drugs that we commonly use for neuropathic pain – the tricyclic antidepressants like amitriptyline and some of the anticonvulsants like gabapentin, Pregabalin, sodium valproate – these drugs can help. But it is not always possible to turn the pain down. Any sort of neuropathic pain is difficult to treat and so chronic pain or surgery is really no different from those, these are difficult pains to treat.

Evans: Some of drugs you mentioned there, they are antiepileptic drugs?

Macrae: Yes.

Evans: So, what does that have to do with pain?

Macrae: Well, if you think of epilepsy as the brain being hyper excitable and so it fires off and causes a fit, and what I am saying is your spinal cord or your periphery might be over excitable and what these drugs do is they damp down over excitable nerves. So, what you end up with is the whole system being damped down and less likely to fire, less likely to cause pain. And the tricyclics are not working through an antidepressant effect – in fact they were originally used as antidepressants but in far higher doses – but at much lower doses they have an effect on some of the transmitters in the pain pathway as well, at the spinal cord level. So, they are not working because they are antidepressants, they are working because they affect nerve transmitters that are present in the pain pathway in the spinal cord.

Evans: Dr Bill Macrae.

One category of chronic pain after surgery is known as phantom limb pain, this can follow the amputation of a limb. Now there are various reasons why an amputation might be necessary. Some conditions like diabetes reduce the blood flow to the extremities and that can cause damage and I have known lifelong smokers – my mother included – who have had toes and legs amputated for similar reasons. Another reason is to prevent a tumour invading the surrounding tissue, but the major cause for amputation is due to crush injuries, and that is particularly relevant today with more and more soldiers returning from Afghanistan with blast injuries from IEDs (Improvised Explosive Devices).

Dr Joan Hester is a consultant in pain medicine at Kings College Hospital in London. She is past President of the British Pain Society and has also given talks and written articles for the Limbless Association, that’s an association for amputees.

Hester: Phantom limb pain is defined as a pain that follows amputation of either a leg or an arm. You could also call it ‘phantom limb sensation’, which is the sensation that the limb is still there even though it has been removed. It is not always painful, but sometimes it can be extremely painful, usually if it has been painful before it was amputated, it will be more painful afterwards.

And it is because the limb is represented as a map on your brain – all your body is represented as a map and you have bigger representation for some parts of the body than others. So your thumb for instance, will have a big area, because it does so much in normal life, and your big toe will have a big area. So, when the limb has been amputated, the map is still on the brain and the brain slowly reorganises it, so that the limb gradually feels as though it is shrinking in your mind, until only the big toe for the leg, or the thumb for the arm feels as though it is sticking out of your stump. It is a little bit of a difficult concept.

But, that might take six months, that might take longer sometimes. And during that process some people feel the pain that they had before in the limb, although the limb is not there. And that could be very strange couldn’t it, if you were not expecting it? So we try to tell people before the amputation that this is something that might happen.

And they do get other kinds of pain as well, because the stump itself… obviously when they do the operation, they have to cut through the bone, they have to cut through muscles and nerves and a good surgeon will bury the nerve under the muscle, because the nerve tries to regrow – when they cut into the nerve it sends out little feelers like tendrils of a plant and they can become very sensitive: what we call a ‘neuroma’. So, you can imagine, if that was under the skin, especially where you were trying to wear your prosthesis, it could be extremely unpleasant and uncomfortable.

The third kind of pain is a general sensitivity of the stump, which often happens immediately after the surgery, where it is just very sensitive to touch, or to hot, or to cold and that is a kind of nerve pain as well. That can be very unpleasant and stop people from being able to wear their prosthesis. But prostheses have improved so much – they used to be very heavy, very cumbersome, lots of straps, and now they are very light and wonderful modern materials and they have suction legs or arms so that they just sort of glide on and stay on much more easily. So, I think the prosthesis technology has improved, but maybe our management of pain hasn’t kept quite up with that.

To try and help the pain, of people who have had amputation, firstly, is to prepare them for the kinds of pain that they might experience, because I think understanding it does really help people. And it was something that was fashionable a little while ago, which was trying to reduce the pain before surgery, by giving them an epidural – this is particularly for the lower limb – in order to numb the nerves, so that even before the operation the pain was lessened and continuing that through the operation and afterwards. And there have been some different results. People have studied it, and one group of patients – ‘yes, it did help’ – and another group of patients – ‘it helped at the time, but not afterwards.’ And then we can give people the drugs that help what we call ‘neuropathic pain’, nerve pain – like gabapentin or pregabalin or amitripyline – can start those really early, just immediately after the operation.

You can talk to the surgeons. Many surgeons are very, very good, because the way they do their surgery is fairly critical to the amount of pain that somebody will get. And we can obviously after the surgery, give very strong painkillers, like morphine combined with – if it is possible – an epidural to actually numb the area and that seems to help.

Macrae: When I first started back in the 1980s, 1970s, we still got people who had been told that they couldn’t have phantom pain, particularly in the military. The military doctors seemed to be in denial about phantom pain and they regarded it as a psychological aberration. I’ve been looking back through history about this, and if you go right back to the 15th century, there are a lot of articles about, or paintings or things about, amputation; you can actually see in churches, paintings of saints, replacing amputated limbs. So, clearly people had amputations in those days. And then there was a French surgeon called Ambroise Paré, in the sixteenth century – he was the first one to talk about the phantom phenomenon, but he didn’t call it that. So, it was talked about then and then, of course, Lord Nelson lost his arm and he had this classic feeling, that many amputees get, of his fingernails digging into his palm, which is often what people describe to me. Yet, you would think with people like that, it wouldn’t be ignored; people would say, ‘oh yes, this is a phenomenon’, and yet it was still denied.

The man who coined the term ‘phantom pain’ was a wonderful man called Silas Weir Mitchell, who was a doctor in the American Civil War, although I am proud to say of Scottish origin, and he coined the phrase phantom pain and followed people through in the American Civil War – very interesting man, he was an neurologist – and he documented the whole thing, but still it wasn’t recognised.

If you look at the First World War and you see how many people were killed, or injured in the First World War – there were 12 million soldiers killed – and huge numbers of people suffered amputations and yet the subject was again largely brushed under the carpet. We come to the Second World War and they are putting in incidence of 2 to 4 per cent of people, which we now know is far, far too low and decent studies – again, an excellent group in Denmark – showed at one time or another about 80 per cent of people who have had an amputation will have pain. They are not having it all the time, some of them may have had it for a short time, and it may not have been very serious, but a figure of 2 per cent is clearly completely ignoring the problem.

When you look at their papers, they are attributing it to psychological causes, or they are just not believing their patients. So, it baffles me that the medical profession and, I must say, the public in general seem to ignore the subject. There seems to be some barrier to recognising that losing a limb can lead to pain – I mean, ‘if you haven’t got a leg, how can it be sore?’ as most people would ask. So, you can see if we can’t recognise something that is as obvious as that, you know pain after a hernia operation, people are not going to be able to understand that. I think that the surgeons suffer from guilt because they think that they might have done something wrong, which isn’t the case. I mean, I don’t think you need to do anything wrong, I think, as I was saying right at the beginning, some people are going to have pain after an injury. It is bad luck, but it happens.

Evans: But it is a very difficult concept, isn’t it? That, if my arm were removed above the elbow, to imagine that two foot away, there is two foot of air space, and I hurt at the end of that nothingness.

Macrae: Yes, it is difficult, but it happens. And, in fact, there is a lot of really interesting research, particularly brain imaging which has taught us a bit about it. It hasn’t given us the answers we would like, but it certainly helped us to understand it better. And it may be that part of the problem is that, the brain re-maps and part of the brain still thinks that you’ve got your hand – or your arm and your hand – and other bits don’t re-map and you have what the psychologists call ‘dissonance’ between the two bits of your brain, so that one bit is saying, ‘you do have a hand’, and your visual system is very clearly saying that ‘you don’t have a hand’, because it can see you don’t. Of course, dissonance can cause very unpleasant sensations like sea sickness – that’s dissonance between your visual system and your balance system. I mean that isn’t the whole story – there is much more to it than that.

Evans: Can that incorrect mapping of the brain be re-mapped?

Macrae: There is some interesting work from Herta Flor in Germany about re-mapping and one of the things that she showed was that, if you give somebody an artificial limb that moves and a functional limb – you know they have these limbs with electrical motors and things in them – and they can look at it and see what looks like a hand moving where they think their hand is. These people tend to get less re-mapping. It’s not cut and dried – it’s not a simple as that – but there is a tendency for an early use of prosthesis – and particularly an active prosthesis like that – reducing re-mapping and reducing pain after amputation.

Hester: The psychological process is also very important and it depends how somebody’s coping with their illness beforehand, or, if it is a sudden accident, whether they witness that accident or whether they have memory or no memory and how it is going to affect their lives, as you can imagine. I mean it is extraordinary with the soldiers as an example, because their motivation is to get back into active service again, but somebody who has had many years of dealing with poor circulation in their legs might not have walked for a very long time so that they become very depressed – their social life has gone, they have lost jobs, they have lost friends and they will become very depressed.

An amputation may or may not help that; it depends how… if they can get active again – that’s the aim, to get active again. I think understanding pain, is incredibly important, pain patients have sometimes pleaded to have a limb amputated because of the pain. Sometimes it is not appropriate to do that and they find it very difficult to understand why the pain won’t go, so we have to explain again and again sometimes that the nerves are still there between the stump, the spinal cord and the brain, so you are not cutting out the nerve pathway that tells the brain that there is something there and that’s why the pain persists.

In trying to prepare patients for this after surgery, we can’t numb the brain so much. We can stop the whole area becoming so sensitive with some of the drugs. It is also critical the way the dressings are applied and the way the stump is looked after, to prevent infection in particular. We can teach people how to use TENS machines, acupuncture has been used, physiotherapy is very important getting people walking as quickly as possible, and something has been used called ‘mirror therapy’.

Now, this is putting a mirror on the bed or on a hard surface – a table if it would be the arm – opposite the good limb, so that the brain sees the good limb as the one that has been amputated. And then the brain will work on that area and a physiotherapist can guide the person to do things with the good limb that helps the brain to translate that into good things for the limb that is not there anymore. It sounds a bit strange but it is helping the brain to re-map itself in a helpful way, but it requires a lot of patience and in busy hospital environments it is not often done – you would need a very helpful, friendly physiotherapist. Or, if you were taught how to do it yourself, you can do it at home. You can get yourself something called a mirror box, or if you have got a very kind person in your house they could make one for you! It is all quite simple and feasible, it’s just somebody teaching you what to do and the importance of it.

Evans: Dr Joan Hester, Consultant in Pain Medicine at King’s College Hospital in London. Now, as always, I would like to remind you 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 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 those mirrors and to Sunny Boshoff, who, as you will remember, has complex regional pain syndrome.

Boshoff: During a course of occupational therapy I was kind of looking around the room while I was having my hand tweaked and I saw this kind of box thing, with a mirror stuck on it and I said, ‘ooh, what is that?’ And they said: ‘That is a visual feedback tool.’ And they said, ‘would you like to try it?’ And I said: ‘yes, I would.’ So they made an appointment for me to see somebody who had been trained in visual feedback and it is fantastic. What it is really, is a mirror, so if you imagine a vertical mirror, and you put your injured hand behind the mirror, and you put your uninjured hand in front of the mirror and you look into the mirror, you line it up so that when you look into the mirror you see two healthy hands. Then you try slowly to do movements with both hands and your eye sends a message to your brain, that you have indeed got two healthy hands and against all odds it helps the pain. I cannot do certain things – I cannot make a fist with my injured hand still, even with all the exercises and whatever – but if I do the mirror work and I make a fist with both hands, it feels as though I am making a fist with both hands, if I am looking in the mirror.

Evans: But you are not…

Boshoff: No.

Evans: But I guess with CRPS you need to do this fairly often?

Boshoff: Yes.

Evans: So how do you get around that?

Boshoff: A friend of mine made one for me, which was sort of like a table, in a sense, or a box, like a tunnel, and a mirror on the one side and you put your hand into the tunnel – the injured hand – and you would look at the reflection. It just became a big cumbersome thing, I couldn’t carry it around. So, I designed one which is based on like those clipboards that you get – the sort of plastic clipboards that everybody uses. It has got a cover, so that you fold it around. So I manufactured one using that kind of material and the mirrors are on the inside and you fold it open.

Evans: So, my right hand is injured, I put my right hand behind the mirror…

Boshoff: That’s right…

Evans: And by moving my good hand, in the face of the mirror, my brain is telling me that from the reflection of my good hand, that my bad hand is working well?

Boshoff: Yes.

Evans: For those of us who are a certain age, we will remember Harry Worth the comedian, Harry Worth where he went in front of a shop window and raised his left leg and then the mirror image looked as if he was raising both legs at the same time…

Boshoff: [Laughs]

Evans: And it is very similar to that isn’t it? I am looking at my image of my good left hand, I am looking at the reflection of that and my brain is telling me that that is my good hand. So, maybe what it is doing is unscrambling those circuits.

Boshoff: It is very difficult when you are looking at the very injured hand – and it’s purple and it’s swollen, it’s hairy and this sort of stuff – to imagine that it is okay. But behind the mirror when you are looking at the good hand, your brain does it for you, you don’t even have to think about it.

Evans: Sunny Boshoff.

Of course the visual feedback mirror won’t be for everyone, but it is suggested that the earlier you start using it, the more effective it could be. Sunny has also written a book about her experience of managing complex regional pain syndrome, it is called CRPS Awareness: Moving against Pain. You can find out more information on it and the visual feedback mirror at her website and that is at crps-selfhelp.com.

Now, before we end this edition of Airing Pain, let me just remind you that you can put a question to our panel of experts or make a comment about the programme on our blog, message board, Facebook, twitter, or via email and of course pen and paper. All the contact details you need and a link to download all previous additions to Airing Pain are at our website and that is at paiconcern.org.uk.

The last word to Sunny Boshoff:

Boshoff: After the accident my little finger, my ring finger and the middle finger were stuck together, I couldn’t even get a towel in between them to dry myself, and they were very, very painful. It was quite hard to touch them or do anything, but I worked at it and kept on trying to get them apart and then eventually, I remember the day I went to the occupational therapist and I took some moisturiser and I said, ‘Oh, I’m going to show you something.’ And I rubbed the moisturiser in and I was able to put my fingers through each other with both hands. And it was so exciting, and you know they celebrated with me and I really encourage people to get involved with the people who are trying to help them because it is really a good way to do it.

Contributors:

Sunny Boshoff, patient
Dr Bill Macrae, retired (formerly Ninewells Hospital, Dundee)
Dr Joan Hester, Consultant in Pain Medicine, King’s College Hospital, London.

Understanding complex regional pain syndrome, and treating phantom limbs with mirrors

This programme was funded by a grant from Astellas Pharma.

Contributors:

Sunny Boshoff, patient
Dr Bill Macrae, retired (formerly Ninewells Hospital, Dundee)
Dr Joan Hester, Consultant in Pain Medicine, King’s College Hospital, London.

What facial expressions in mice can tell us about pain, managing pain in dementia patients, and finding hope in a pain support group

To listen to this programme, please click here.

Prefer a PDF?Download

People with mental illness and chronic pain often find it difficult to access the treatment they need. Specialist nurse Valerie Conway talks about her work in providing carers with the skills to better look after people with Alzheimer’s and dementia who have pain.

Measuring pain through facial expressions is one way in which health professionals can become more aware of the needs of those who are unable to verbalise their experience. Professor Jeffrey Mogil tells Airing Pain about his work measuring pain responses in the facial expressions of mice and how this could help in understanding human pain and in finding new drug treatments for pain.

We also hear from Sue Clayton about how sharing her experiences and getting pain management advice at a pioneering chronic pain support group in the eighties helped her put her life back together after post-surgical pain.

Issues covered in this programme include: Medical research, dementia, support groups, Alzheimer’s disease, measuring pain, post-surgical pain, learning disabilities, observing behaviour, facial expression, body language, nonverbal communication, communicating pain, educating carers, brain signals, empathetic pain and mutual understanding.

Paul Evans: Hello, I’m Paul Evans and welcome to Airing Pain. A programme brought to you by Pain Concern, the UK charity that provides information and support for those of us who live with pain. This edition is made possible by Pain Concern’s supporters and friends. More information on fundraising efforts is available on our Just Giving page and that’s at painconcern.org.uk.

Sue Clayton: I was being told by the medics that I was mad, bad and sad, basically – mainly mad. That I didn’t have pain – it was all in my head – and it completely devastated my life. I couldn’t work, look after family, I desperately needed someone else who understood me.

Valerie Conway: If English isn’t their first language, it doesn’t matter – it’s about recognising a change in behaviours and being able to identify they might be in pain so what are we going to do about it?

Professor Jeffrey Mogil: If you put one of the mice in jail in pain and the other one isn’t, and if all three mice are female and cage-mates, then the three female mice will spend more time with the mouse in pain than the mouse that isn’t in pain.

Evans: [laughs] …we will come back to the mice later. They could well be relevant to a pilot project being run by the Community Chronic Pain Services in East Kent, whose Lead Clinician is Consultant Nurse (Chronic Pain) Val Conway.

Conway: For patients with learning difficulties the challenges are that they cannot always express themselves in a way that is obvious that they are in pain. Other challenges are that some of the carers who are looking after them are inexperienced, may lack training and may not know what to look for as far as pain management is concerned. One of the areas that we’re looking into is to develop a training package in order to help carers look after clients in their residences. We’re currently looking at a tool called DisDAT (Disability Distress Assessment Tool), which is a pain tool specifically for people with either learning difficulties or dementia. Hopefully when this tool is rolled out it, it will improve pain management for this group.

Evans: You mentioned communication skills with people with learning disabilities, with dementia, but how do you deal with that, how does it show itself?

Conway: It’s going back to the basics. What we’re looking at is to see if we can get the carers to assess their client group when they come to the home and have a baseline of what is normal for that person. For instance, if it is normal for a person to rock in the chair or grimace, what happens when they are in pain is that behaviour will change. It is recognising the change from the normal for what is normal for that person. And that is what we find is missing, carers may not know the change in behaviour is something to look for that they are in pain.

Evans: How do you notice that?

Conway: This is what the education package is about. We are going to get the carers to come along and my experienced colleagues and myself are going to help them identify pain. We’re going to do some role play; we’re going to do some group work, so they can identify baselines for these people so they will notice the changes actually mean something. That way we hope that the communication between the carer and GPs/healthcare professional will be improved to get the right treatment for that client group.

Evans: Is there a lack of knowledge on pain management within the care system?

Conway: Yes, mainly because most of the care system is not within the NHS (National Health Service) umbrella, it has gone out to private care homes. And a lot of the staff are not trained nurses or physios. They go into the profession because they want to care for people but often the training is not available within the specialised areas.

Evans: My memory of my father in a nursing home was that most of his carers were from European countries, non-British countries – actually, they were very good indeed, but how would you train somebody in that position who spends more time with a patient than anybody else really, how would you train them?

Conway: Well this is what we looked at, when we were designing the education package. Certainly in Kent where I worked a lot of the carers were young and English is not their first language, therefore, the tools we need to design must be simple, but ones they recognise and understand. Again, if we are using the same tool day in day out repeating it, they will learn the different words and behaviours they are dealing with.

Evans: So in many ways you are picking up more on the body language than the spoken language?

Conway: Well yes… well it is looking at the baseline. Looking at what is normal – normal in inverted commas for that client group – and they can recognise that. It doesn’t matter if English is not their [first] language it is about recognising a change in behaviours and being able to identify that this might be they are in pain and therefore what are we going to do about it.

Evans: Val Conway, Lead Clinician for Community Chronic Pain Services in east Kent. Now one obvious form of body language is of course facial expression. If you stamp on my toe, I will probably grimace. I know that is not earth shattering research, but Jeff Mogil who is the EP Taylor Professor of Pain Studies at the McGilll University in Montreal, Canada is interested in how facial expression could be used as a measure of pain, but his subjects aren’t people but mice.

Mogil: Facial expressions of all the emotions are rather stereotyped – people from different cultures and different ages reliably show the same movement of muscles in the face when they are angry, or happy, fearful or enraged or, as it turns out, in pain. However, this is not what I’m interested in. That has been going on a long time. I was interested to see if this works in animals, as well as people. And of course Darwin wrote an entire book on the subject in 1857, The Expression of Emotion in Man and Animals, where he argued that any emotional state that you can see through a facial expression in humans, you should be able to see in all mammals and amazingly no one had ever tried that. No one had ever looked to see if there is a grimace simply put, in any other species other than people.

So we tried it in the mouse and recently we tried it in the rat and it works and of course they do grimace. Interestingly, it works sometimes and not other times, so generally speaking we find that pain that lasts anywhere from about 10 minutes to two days you will see a grimace in animals.

Evans: So, you being able to tell if a rat is in pain or happy or whatever, how is that going to affect me?

Mogil: Right, in the pain field there has been increasing frustration with what we call our poor record of translation. What that means is we have all this basic science knowledge, we know all these new molecules that are involved in pain and new brain areas and we really think we have a good handle of the physiology of pain.

The problem is, if you look in the clinic, and see ‘well what’s new?’ You realise not much. You come to the conclusion that most of the drugs used to treat pain at the present time are either drugs that are very much like aspirin, which is from the willow bark ultimately. They knew about willow bark two thousand years ago. The drugs that are used for severe pain – the narcotics, the opioids are… well those are ultimately the same drug as opium. Again, the opium poppy was known two thousand years ago.

Really there is very little that is new in the treatment of pain. People have put these two facts together that we have all these new molecules, but none of them have led to anything new in the clinic. This has led some to believe that the problem might be that the animal models we are using to give ourselves confidence that these drugs would work in people just aren’t doing the trick.

Mogil: There is a lot of current work on trying to make new animal models or refine the animal models so they will be more predictive, so if the drugs work against the model in the mouse or rat, we can have more confidence that if the same drug is given to people it would actually kill pain.

What can we do to make better animal models is being worked on, so we recently published we can use facial expression as a new measure in animal experiments. Before we would make some manipulation, a drug, say, then we would poke the animal’s foot with thin nylon filaments and we would find that after the injury they would respond to thinner filaments, then if you gave them a drug they would respond only to thicker filaments. Again we pretended that that was pain, but it isn’t pain, it was a reflex withdrawal to stimulus.

And this is not what patients complain of – they do not say, ‘I withdraw my hand from thinner filaments than before’ or ‘when I used to put my hand on a hot stove it hurt, but, boy, now after my injury it really hurts.’ This is not what patients are presenting with at the doctor’s this is not the clinical problem. The clinical problem is spontaneous pain – ‘my arm hurts. You do not need to touch it, it just hurts.’

And our problem in rats and mice is that we have not had very many measures, if any at all, of spontaneous pain. We can poke the mouse or the rat, exert mechanical pressure, but we have a hard time knowing if an animal is in pain. This is where facial expression comes in as they are commonly used in nonverbal humans.

Obviously in normal adults, you do a pain study and you ask how much does it hurt and they will give you a number and you have your measure. In babies, for example, or in demented older adults you can’t ask them and get any answer at all or get an answer you can trust; so, for ten or twenty years people have been using facial expression to come up with a number for how much pain that baby is in. We figured that measuring spontaneous pain you don’t need to touch them, you just need to video their face and then find a way of scoring it. If it’s good enough for babies, it’s good enough for mice and we could see, if it works, we could use it as a measure of spontaneous pain that is different from the current measures. And so far it has been working out really nicely in fact.

Evans: In evolutionary terms is that the purpose of facial expression?

Mogil: That’s a really interesting question. It’s been argued in humans that the purpose of facial expression – actually, the person who argued this first, Amanda Williams, who was at this meeting I just came from – it’s been argued in people that the purpose of the grimace is a communication strategy designed to solicit help or for sympathy. It may be the same in mice, but we are not sure.

We have one piece of evidence, that we find very interesting, that if you put two mice behind jail bars at the end of a corridor and then you have a third mouse that can go where it wants – it can stay away from both or go and visit one or go visit the other – and you put one of the mice in the jail in pain and the other one isn’t. The purpose of the experiment is to see where the free mouse spends its time. We find that generally they do not care much. They generally spend a bit of time with one, a bit of time with the other, with one exception: if all three mice are female and if they are cage mates – if they all come from the same cage so that they are familiar with each other – then the free female mouse will spend more time with the mouse in pain than the mouse that isn’t in pain, suggesting that she was going over to try and help. But how did she know they were in pain?

We expect it’s at least partially because of facial expression and this might be the operation of a communication strategy that’s effective in the mouse. Then on the other hand, it has been argued as well that things are there and they are ultimately reflexes and through evolution primates and eventually humans will learn to use these reflexes for other purposes. It is possible that facial expression in animals has nothing to do with communication, but because it was there and we got smart enough we figured a way to use it for communication. So I am not sure yet, but that’s actually a really good question.

Evans: I remember from my basic psychology days at university an experiment on classical conditioning. Half our class smiled and the other half of the class looked disinterested and grumpy and the teacher would automatically gravitate towards the smiling half is that the same sort of thing?

Mogil: Yes, it may very well be the same thing with one exception though: one can imagine that because of the experiment the professor is spending more if his or her attention on the smiling class because the smiling is more comforting perhaps and looking at smiling people increases his or her mood. But our mouse spending time with the mouse in pain is voluntarily approaching something that may very well even be dangerous. The mouse doesn’t know whether what happened to the mouse in the jail could happen to the free mouse too. It doesn’t know, so it could actually be doing something dangerous. So it is all the more impressive that it occurs at all.

Evans: Are you bringing altruism into the equation though and aren’t humans supposed to be the only species to have altruism?

Mogil: They are and they are also the only species that are supposed to have empathy, but we actually showed in another series of experiments a few years ago, that mice are quite capable of at least the earliest forms of empathy as well. Do you want to hear about this?

Evans: I do. [laughs]

Mogil: Ah ok [laughs] …So essentially what we found, is that compared to mice that were tested alone in a Plexiglas observation cylinder by themselves – which is how we and everyone else usually does it – if you now instead of testing one mouse per cylinder, test two mice per cylinder and you compare the situation where one mouse is in pain and the other isn’t to a situation where both mice are in pain.

Now remember, in the condition where both mice are in pain, not only are they in pain but both are also looking at another mouse in pain. And the question is, does that make any difference? It turns out that it does. That both mice will have more pain than if they are tested alone or tested in the presence of a mouse that wasn’t in pain. But only, again, if they are cage-mates, if they are strangers there’s no effect of this social observation. After about a year of controlled experiments that the reviewers made us do a year later we convinced ourselves and the reviewers that this represented empathy.

Now, your listeners may find that odd. That’s because people’s understanding of the word ‘empathy’ and the real definition of ‘empathy’ are not the same. When we say ‘empathy’ most people think of sympathy, but sympathy isn’t empathy. In fact, empathy breaks down into four or five different things the bottom layer is something what we call ‘emotional contagion’.

Emotional contagion is in fact something everyone is familiar with. The two great examples of that are one baby in a nursery crying and setting off all the others – that’s emotional contagion. The other classic example is a contagious yawn. If someone yawns, it is more likely than chance that people near them will also yawn. They are not yawning because they are bored or tired, they are yawning because they saw the first person yawn. And that is, of course, empathy. Your state is being manipulated by the state of someone you are observing.

And so we think our demonstration of increased pain sensitivity while observing a cage-mate in pain fits exactly into this same category. Human empathy has been shown to modulate pain and also to lead to activation in the same brain regions that are activated when there is real pain, so observing pain in someone else will light up the areas of the brain as if you were getting the pain yourself.

Evans: I may be saying the unforgiveable here, but it seems as if people with chronic pain shouldn’t actually mix in crowds of other people experiencing chronic pain.

Mogil: Yes, you’re right, the implication of this work is that pain in some sense is contagious. Now that is just a hypothesis and that would obviously need to be shown. I’ve been racking my brain trying to think of a way to prove that. I can only think of one experiment that would work, except I don’t think it would be practical or that I would ever get permission to do it. But if you did an experiment where you looked at soldiers in basic training, who are living in a barracks together and no-one isolated themselves from anyone else, I would be willing to bet that if someone there got a headache or migraine, that you would see others in 24 hours would get migraines over and above chance levels. But I think that’s right, that’s the implication but hasn’t been proven yet.

Evans: So where do support groups fit into this?

Mogil: Well right, it suggests that support groups may be doing harm in addition to doing good. It’s very important to point out that on balance I’m perfectly convinced that they do more good than harm.

Evans: And of course in support groups people aren’t going just to be in pain. They aren’t sitting down being miserable and moaning. They are going to give support to other people and to experience how to get on.

Mogil: Yes of course and one needs to remember that chronic pain patients aren’t in pain constantly – they have attacks of pain and that happens at certain frequencies and the likelihood that during a support meeting that a whole bunch of people actively moaning about a pain crisis is pretty low.

Evans: Jeff Mogil of McGill University in Montreal, Canada.

****

Clayton: I’m not suggesting that patients sit over long cups of coffee and switch horror stories. Sometimes that is therapeutic, but I think we can get much more out of our relationship with each other than that.

Evans: This is Sue Clayton who has had neuropathic pain following surgery to relieve her back pain in the early 1980s.

Clayton: I desperately needed someone else who understood me. I was being told by the medics that I was mad, bad and sad, basically – mainly mad. That I didn’t have pain, it was all in my head. I was in my mid-thirties, had a young family, I had everything to live for, I did not need a chronic illness or condition. I didn’t know anyone else who had a condition where they didn’t get better, people usually have an acute condition and they’re treated and the problem is solved. In your mid-thirties you don’t tend to know people who have ongoing conditions. It completely devastated my life: I couldn’t work; I couldn’t look after my family; I worried my children would need to go into care because I was bedridden. But above all I was experiencing terrible pain, back pain.

I’d had surgery, I’d had a second surgery, been told ‘yes, the operation was a success, so it is your fault you are not getting better’. Which is an incredibly damaging thing to do to somebody because you are left with no support, because what your, in my case, orthopaedic specialist tells your GP affects your GP’s attitude. And presumably they were saying ‘this lady has been operated on, problem solved. What is the problem?’

But I had unremitting pain, which absolutely destroyed me and I was being given nothing that even touched the pain and I was just consumed by it. I couldn’t eat, sleep, I was depressed. I was worried silly. My poor husband had to take charge of looking after me and the family while trying to keep a roof over our heads by hanging on to his job which was quite high pressured.

So I felt totally isolated. And I really thought ‘am I going mad?’ But I knew I wasn’t. I knew the pain was real, but I was being told otherwise, which destroys your whole central being, so I was desperate to find out what was going on. These were the days before the internet, so it was incredibly difficult to access medical literature, so it was really hard to try and research what was happening to me.

I happened to see an article in my local newspaper on a work-injured nurse who had damaged her back lifting a corpse at work. She stopped working as a result, couldn’t get help because of her problems, so she ended up going to the Walton hospital in Liverpool, which then back in the 80s was the only pain management programme in the country. It helped her tremendously. She learnt a lot about managing her pain and she’d come back to Whitstable, which is quite nearby to where I lived in Canterbury. And she decided to start a self-help group to help others.

She held meetings to which I started going. So for the first time I met people who understood what I was going through – other patients. We shared stores and information. We gave each other support, we had speakers from the medical profession and allied professionals like medical herbalists, acupuncturists, Alexander technique, physiotherapists. It became a complete lifeline, so through her I learnt what pain management was about, what books I could read and how I could teach myself, so it grew very, very slowly from there.

Evans: So this is back in the 80s?

Clayton: Yes, this is back in the 80s, around 1985. So it was a lifeline. If I hadn’t found that I really don’t know what I would have done because my life had fallen apart and there was no support from the medical profession at that stage. I was so angry at what had happened to me. I thought it was disgraceful that people could be left in such a serious condition, with their lives completely falling apart. The anger impelled me to get involved. I thought, ‘this isn’t right. Something’s got to change. We need to support these patients. We need to build links with the medical profession. We’ve got to make things better.’

Evans: You were instrumental in starting Pain Concern which was then called Self-Help in Pain. I am certainly grateful to Pain Concern for the management of my condition. How do you think people should use self-help groups like this?

Clayton: I think it’s given people somewhere they can go to be understood and receive support and information. For many patients, it has given them contact with other patients who have chronic pain conditions themselves – maybe different conditions – but there is an affinity there which patients respond to amazingly which I certainly found valuable.

Pain Concern has done a fantastic job over the years to build relationships with the medical profession, because I think the way forward is for us to work together. Some clinicians have been fantastic and have seen the value and wanted to be part of patient groups. They have wanted to make that partnership much easier and that can only be good for other patients.

Originally SHiP and then Pain Concern just issued information about chronic pain which is usually what people want most of all, but of course the helpline has issued support and information to people for many years to people who have nowhere else to go, couldn’t find anyone else who understood them, nowhere to get advice. Pain clinics were perhaps few and far between. Pain Concern has been able to put people in touch with pain clinics and tell people what pain clinics can offer. I think it’s just been a rallying point, really as much as anything, to give a voice to patients who otherwise wouldn’t get heard at all.

Evans: So Pain Concern is here to help all of us, so don’t forget you can put a question to our panel of experts or a comment to our blog, message board, Facebook, Twitter, via email or of course pen and paper, all contact details you need and a link to download Airing Pain are on our website and that’s at painconcern.org.uk.

Now, before we go I will just remind you that while we believe the opinions on Airing Pain are accurate and sound 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 knows the appropriate action to take on your behalf.

Now returning to Sue Clayton to end this edition of Airing Pain – she may have different conditions to you me or any of the 7.8 million of us in the UK who live with chronic pain, but her experiences in dealing with it will be familiar to all of us:

Clayton: Absolutely, that’s why we understand each other. And that’s why there is this affinity, it’s impossible to have that with someone else who doesn’t have chronic pain. It’s a bonding experience which has given us strength above all else to feel we can change things and make a difference. Services will be improved and we hope that policy makers will understand the scale of the problem and the difficulty in addressing the problem.

And I think what needs to happen now is through political pressure where the patient support groups are working with clinicians to present a united voice to policy makers, perhaps we can develop much better integrated, comprehensive services staffed by clinicians who have got adequate training and clear pathways, so patients understand what will happen when they are referred, what it will mean, who will see them, why they will see them and what support is ongoing.

I think patients need both good official medical services and they also need the opportunity to meet with other patients if possible or at least to communicate with other patients. This of course has changed enormously with the internet, patient forums, email has completely revolutionised the way patients can cooperate and talk to each other which is a huge bonus. And I think actually this has the potential to take a great load of the health service. Patients can raise the profile and make a difference to the way the services are provided so they are suitable for the people who are going to be using them.

Contributors:

Valerie Conway, Clinical Lead, NHS Community Services Chronic Pain, Kent
Professor Jeffrey Mogil, Professor of Pain Studies, McGill University
Sue Clayton, past member of BPS Patient Liaison.

What facial expressions in mice can tell us about pain, managing pain in dementia patients, and finding hope in a pain support group

This programme was funded by a grant from Big Lottery Fund, Awards for All (Scotland) and an educational grant from Pfizer.

Measuring pain through facial expressions is one way in which health professionals can become more aware of the needs of those who are unable to verbalise their experience. Professor Jeffrey Mogil tells Airing Pain about his work measuring pain responses in the facial expressions of mice and how this could help in understanding human pain and in finding new drug treatments for pain.

Contributors:

Valerie Conway, Clinical Lead, NHS Community Services Chronic Pain, Kent
Professor Jeffrey Mogil, Professor of Pain Studies, McGill University
Sue Clayton, past member of BPS patient liaison.

Cookie	Duration	Description
__cfduid	1 month	The cookie is used by cdn services like CloudFare to identify individual clients behind a shared IP address and apply security settings on a per-client basis. It does not correspond to any user ID in the web application and does not store any personally identifiable information.
_GRECAPTCHA	5 months 27 days	This cookie is set by Google. In addition to certain standard Google cookies, reCAPTCHA sets a necessary cookie (_GRECAPTCHA) when executed for the purpose of providing its risk analysis.
cookielawinfo-checbox-analytics	11 months	This cookie is set by GDPR Cookie Consent plugin. The cookie is used to store the user consent for the cookies in the category "Analytics".
cookielawinfo-checbox-functional	11 months	The cookie is set by GDPR cookie consent to record the user consent for the cookies in the category "Functional".
cookielawinfo-checbox-others	11 months	This cookie is set by GDPR Cookie Consent plugin. The cookie is used to store the user consent for the cookies in the category "Other.
cookielawinfo-checkbox-advertisement	1 year	The cookie is set by GDPR cookie consent to record the user consent for the cookies in the category "Advertisement".
cookielawinfo-checkbox-necessary	11 months	This cookie is set by GDPR Cookie Consent plugin. The cookies is used to store the user consent for the cookies in the category "Necessary".
cookielawinfo-checkbox-performance	11 months	This cookie is set by GDPR Cookie Consent plugin. The cookie is used to store the user consent for the cookies in the category "Performance".
viewed_cookie_policy	11 months	The cookie is set by the GDPR Cookie Consent plugin and is used to store whether or not user has consented to the use of cookies. It does not store any personal data.

Cookie	Duration	Description
_ga	2 years	This cookie is installed by Google Analytics. The cookie is used to calculate visitor, session, campaign data and keep track of site usage for the site's analytics report. The cookies store information anonymously and assign a randomly generated number to identify unique visitors.
_gid	1 day	This cookie is installed by Google Analytics. The cookie is used to store information of how visitors use a website and helps in creating an analytics report of how the website is doing. The data collected including the number visitors, the source where they have come from, and the pages visted in an anonymous form.
vuid	2 years	This domain of this cookie is owned by Vimeo. This cookie is used by vimeo to collect tracking information. It sets a unique ID to embed videos to the website.

Cookie	Duration	Description
IDE	1 year 24 days	Used by Google DoubleClick and stores information about how the user uses the website and any other advertisement before visiting the website. This is used to present users with ads that are relevant to them according to the user profile.
NID	6 months	This cookie is used to a profile based on user's interest and display personalized ads to the users.
test_cookie	15 minutes	This cookie is set by doubleclick.net. The purpose of the cookie is to determine if the user's browser supports cookies.
VISITOR_INFO1_LIVE	5 months 27 days	This cookie is set by Youtube. Used to track the information of the embedded YouTube videos on a website.

Cookie	Duration	Description
_gat_gtag_UA_32255482_2	1 minute	No description
CONSENT	16 years 8 months 9 days 15 hours 12 minutes	No description
huBv		No description

Peer Support. Join the community

Subscribe to Pain Matters

In pain? Don’t understand what’s happening?

Fundraise for Pain Concern

Peer Support. Join the community

Subscribe to Pain Matters

In pain? Don’t understand what’s happening?

Fundraise for Pain Concern

Peer Support. Join the community

Subscribe to Pain Matters

In pain? Don’t understand what’s happening?

Fundraise for Pain Concern

Peer Support. Join the community

Subscribe to Pain Matters

In pain? Don’t understand what’s happening?

Fundraise for Pain Concern

Peer Support. Join the community

Subscribe to Pain Matters

In pain? Don’t understand what’s happening?

Fundraise for Pain Concern

Peer Support. Join the community

Subscribe to Pain Matters

In pain? Don’t understand what’s happening?

Fundraise for Pain Concern

Peer Support. Join the community

Subscribe to Pain Matters

In pain? Don’t understand what’s happening?

Fundraise for Pain Concern

Peer Support. Join the community

Subscribe to Pain Matters

In pain? Don’t understand what’s happening?

Fundraise for Pain Concern

Peer Support. Join the community

Subscribe to Pain Matters

In pain? Don’t understand what’s happening?

Fundraise for Pain Concern

Peer Support. Join the community

Subscribe to Pain Matters

In pain? Don’t understand what’s happening?

Fundraise for Pain Concern

Peer Support. Join the community

Subscribe to Pain Matters

In pain? Don’t understand what’s happening?

Fundraise for Pain Concern

Peer Support. Join the community

Subscribe to Pain Matters

In pain? Don’t understand what’s happening?

Fundraise for Pain Concern