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- Herausgeber: Icon Books
- Kategorie: Ratgeber
- Serie: Practical Guide Series
- Sprache: Englisch
Chronic pain affects huge numbers of people – the WHO estimates that 37–41% of people across developed and developing countries suffer, and the figure rises in countries like the UK where the population is ageing. From arthritis to migraine, back pain to diabetes, chronic pain is a huge problem for individuals, their families and carers, health providers and employers. David Walton, a clinical and cognitive psychologist who experiences chronic pain himself, guides readers through an understanding of the nature of pain; how the body and mind react to it; how to minimise pain; and how to choose the right therapies, medication and relief strategies. Modern research is presented in an engaging and positive way, alongside self-assessment questionnaires, case studies and practical do's and don'ts. Through an understanding of pain mechanisms and relief strategies, readers will be enabled to manage their symptoms better and regain some control over their daily lives.
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Seitenzahl: 244
Veröffentlichungsjahr: 2019
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About Self-management
Pain is not pleasant. It hurts. But many chronic pain patients attending pain clinics say the real problem isn’t the amount of pain as such. It’s how pain weaves its way into their everyday lives, limiting activity and preventing any sense of being in control that they find most exhausting. And, sometimes, overwhelming.
There are many different causes of long-term pain, and we do not know them all yet. But whether you suffer chronic pain yourself, or are supporting someone else who does, managing it effectively requires the person who experiences it to become their own ‘pain manager’. This means getting to grips with a newly emerging understanding of how pain really works. Understanding how pain varies from one person to another is vital because, while there are many ways of coping, what works for one person may not for someone else, even with an identical condition.
The book uses recent research into pain management combined with real patient experiences to help you develop a personal pain management plan. It contains questionnaires, explanations and tools, and is intended to support you when having discussions with doctors or clinical advisers about your personal circumstances. The plan is the start of a journey, first and critically, to understand the pain and your body; then to take control of it, moving from passively enduring to exercising control and deciding how you want to live. Using what you learn, you can decide which of the practical ideas are best for you personally, and what help and support you may need, and you will discover how your understanding and outlook are really the key to overcoming your pain.
Note
The research and ideas described in the book come from many sources. Major contributions by individuals have been acknowledged, but it has not been possible to reference every idea, development or research conclusion. The author wishes to thank all those health and allied professionals whose work has underpinned this distillation of current thinking about pain management.
It is important to understand, however, that the contents of this book are of a general nature, based on the best information available to the author at the time of writing. The book does not constitute individual medical advice – so always consult a doctor or appropriate professional about your particular circumstances and condition. Neither the author nor the publisher shall be liable or responsible for any loss or damage allegedly arising from any information or suggestion in this book.
Contents
Biographical Note
Dr David Walton
David was initially trained as a cognitive and clinical psychologist in the UK’s national health service (NHS). He subsequently qualified as an occupational psychologist, taking up an executive management post in public service. In 1988, he was appointed principal psychologist in the UN Research Institute for Social Development, working mainly on conflict resolution and institutional capacity building. He returned to health services and consultancy work in the UK, specialising in working with cancer patients, developing clinical teams and improving patient experiences.
He has worked with people with pain in the NHS and voluntary sectors, run hospital pain management clinics and researches developments in pain science. A member of the British Pain Society, he is particularly interested in increasing access to psychological services and their role in pain management and emotional distress.
Acknowledgements
Many people have helped turn the idea for this book into reality. Kiera, my Icon editor, did a magnificent job rescuing the book from being a barely readable medicalised tome. She improved it immeasurably. My experienced clinical reviewers (Beth and Tony, Chris and Alan, Ayesha, Mark and Austin) who contributed thoughts and ideas for the content and focus – and my family (Liz and Ros) for putting up with me as it was written. My thanks.
1. How Can You Use This Book?
Introduction
I have just come into my office from the garden, having enjoyed a few minutes in the all too rare Yorkshire sunshine. I had been contemplating the themes this book should cover when my wife Liz called to me, ‘Just be careful. Don’t do too much out there!’
Fifteen years ago, I had a serious riding accident, and everything changed. I have the aftermath of a spine fractured in five places, various hip and neck problems, osteoarthritis, diabetes and a knee which must be resurfaced, after the opposite hip gave way – it is currently awaiting replacement surgery. These, together with insomnia, fatigue and a possible cardiac condition, now give me the chronic pain which many people I have worked with in pain clinics suffer.
So, in calling out to me, Liz was generously expressing concern because I’m still wobbly on the crutches and she didn’t want me to hurt myself. However, in those nine words she had encapsulated a significant problem for anyone trying to manage pain. It’s great to have someone who cares. But as the butt of examinations, tests, operations and advice about health from every quarter, it can feel all too easy to descend into the role of a dependent ‘patient’, becoming reliant on medics and carers, giving away control, asking too few questions and reacting passively. It’s almost inevitable when you are very ill, are unable to do much and the treatment is in the hands of professionals.
But for those of us with chronic pain where the conditions causing it cannot be easily cured, this outlook is problematic. When our thinking becomes passive, giving away control and ‘ruminating’ on our limitations and pain episodes, it creates changes in our nervous systems and body chemistry, paradoxically making pain more likely.
This view has been shaped by my work with brilliant researchers, colleagues and patients whose daily struggles have put my own pains completely in the shade. I have spent time with colleagues from the British Pain Society and International Association for the Study of Pain, who encourage research and collate the enormous amount of new knowledge on the subject. The emerging evidence about the role of psychological processes in ‘nociception’ – pain awareness and control – is particularly impressive, as are the experiences of chronic pain patients trying the resulting newly developed approaches.
This book draws upon pioneering work by, among others, neuroscientist Lorimer Moseley, clinical educationalist David Butler and psychologists Aaron Beck and Martin Seligman – supported by what I will call the neuroscience revolution, which shows that pain control owes much to the individual’s understanding of how tissue injuries, the brain and our nervous systems work together. This is much more complex than ‘the power of positive thinking alone’. As a practical introduction to this subject, the book will explore some of these exciting new ideas about pain management in (hopefully) a common-sense, non-clinical way.
Chronic pain, for those experiencing it, can be severe and disabling. World Health Organisation (WHO) data show it is an enormous health problem. Globally, it is estimated that as many as one in ten adult individuals are newly diagnosed with chronic pain each year. About one in five, or about 1.5 billion people, suffer from chronic pain, with prevalence increasing with age. Arthritis, post-operative, nerve damage and cancer pain are the leading causes. Reliable estimates indicate chronic pain prevalence at between 25 and 50 per cent in the US and Europe.
In the UK, recent statistics show that 43.5 per cent of the population experience chronic pain. Approximately 8 million people in the UK say their pain is severely disabling, and the Chief Medical Officer reports that 16 per cent of sufferers feel their pain is so bad that they sometimes want to die. As if that weren’t bad enough, a quarter of joint pain sufferers lose their jobs, resulting in a poor quality of life. Studies show that lower back pain is ranked highest in terms of the burden of disease (out of 291 conditions). Four of the top twelve disabling conditions globally are persistent pain conditions.
Most people ‘just get on with it’ using over-the-counter or prescription drugs. Even with medication, the effects of chronic pain on quality of life are known to be highly damaging. A reported 41 per cent of people who attend UK pain clinics have been prevented from working by pain. Persistent pain also affects motivation, mental health and resilience, as well as the sufferer’s family or carers. It can distort their lives, finances, living arrangements and relationships.
Global statistics about chronic pain show that its prevalence varies according to income levels and care facilities in that country. For example, the link between levels of pain, the economy and care systems in the UK recently led the Royal College of Anaesthetists’ Faculty of Pain Medicine to acknowledge that economic considerations have put pain services at risk. Making the case for implementing agreed standards for pain diagnosis and treatment, they describe how pain can be all too easy to ignore, even by clinicians. This is because it is often seen as a non-life-threatening condition, so the clinical consequences of untreated pain are neither immediate nor prioritised. They report findings that pain is frequently under-addressed, under-managed and under-treated because of time and resource limitations. Startlingly, onward referral of patients with unresolved pain for more costly specialist care is also neglected.
But some progress is undoubtedly being made. Standards for pain management and services are becoming clearer, despite funding, staff, skills and time remaining in short supply. To cope, people with pain need to know what treatments and services are available and what they themselves can do to relieve it. That is where this book can help.
There are many guides and booklets about pain available already, which this book will complement, providing practical help with the challenge of taking control. Even with a supportive clinical team, coping with a painful condition requires skill, resilience and effective thinking skills, as well as decision making, planning and problem solving. Relationships with your doctors are important, so I hope the book will also enable you to have more effective discussions with them about your pain experience and how it can be controlled.
The book is organised into two parts:
The ideas which recent research suggests are critical to improving pain management are covered in Part One.
Part Two then looks at strategies and issues which chronic pain patients tell us have helped them to self-manage their pain.
Throughout the book there are questionnaires to measure your own situation, templates you can use and examples or case studies you may find useful.
Chapter 5 is especially important, exploring what you might need to include in a personal pain management plan. One aspect it covers is a ‘Pain Management Wheel’ which shows some of the options for pain control that we’ll explore in Part Two. However, to fully understand what your plan for pain control could contain, wait until you have read all the remaining chapters in Part Two before you commit to your complete plan.
Experiences Coping with Pain
Over the last ten years, many people have found that really understanding their pain – knowing what influences it and recognising how their body and mind react to it – is profoundly helpful. Each person is individual and the circumstances they face are unique. However, understanding the circumstances other people face may offer some insights into coping with your own situation. What follows are real descriptions of how some pain sufferers’ journeys began – presented in their own words. What do you make of their attitudes and reactions to their pain?
Person A is a no-nonsense, stoic individual, happy to get whatever medical advice is on offer and to act on it.
“As a nurse, I have always been sensitive to people with pain – from injuries or from long-term conditions. I have always been pretty strong and maybe too busy in the hospital where I worked – so I cut corners. One day I fell and injured my hip and strained my shoulders and neck when I tried to get up. At first, I was prescribed a course of physiotherapy with an anti-inflammatory painkiller [naproxen] and the opioid co-codamol. The pain would ease temporarily and then return. It started when I woke – after little sleep – and built up the more I did anything through the day. I also had pain in both my hips, coccyx, left leg and foot.
I spent lots of money on physio and weekly Pilates classes after that and took the drugs I was prescribed, but my life still felt like it was on hold. I even cut down socialising with friends because sitting down was so uncomfortable.
Three years ago, I was prescribed injections of an anaesthetic and steroids into my spine. They gave me some relief, but not for long. Last year I was advised to have surgery, during which three of my vertebrae would be fused together with pins. Doctors are reluctant to carry out this type of surgery except as a last resort because it limits movement and adds pressure on the rest of the spine, possibly causing further problems, so I decided to have only two vertebrae done. It should have given me relief for years, but the pain’s back and I just don’t know what to do. They’ve given me Tramadol now and I take about eighteen other anti-inflammatory and nerve pain pills every day.”
Person B is looking for an alternative treatment because she feels little progress is being made with conventional treatments.
“I am 53 and was working as a disability carer and part-time gymnastic coach. I was very active when I was young, and I suppose I put my increasing stiffness and aches down to just getting older. I realised something more was involved when I had to lie back on the bed with my feet in the air to get my socks on. Stiffness was taking over my life, but I just thought, ‘It’s no fun getting older!’
I started to get severe pain four years ago and it became so bad I couldn’t walk any more without help. My knees, ankles, wrists, elbows and shoulder joints were hot and inflamed. The hospital said it is rheumatoid arthritis, incurable … it’s an autoimmune disorder where the body attacks its own cells, in this case the lining of my joints, producing chronic inflammation and eventually bone deformity. They have given me lots of medication including painkillers and something called methotrexate to damp down my immune system and block inflammatory proteins. The drugs stopped working earlier this year, so we’re trying a cancer drug which targets my white blood cells. I’m supposed to be on it for life, but the pain just isn’t going away. I’ve heard of something called vagal nerve stimulation that I’d like to try.”
These are the words of six people attending recent UK pain management workshops.
“• Pain changes you completely … It just takes your life away. Your whole personality changes.
• It does affect your self-esteem because you always think about – well, I know they’re negative thoughts really that you shouldn’t have, but it’s very difficult not to sometimes – you think about the things that you used to do and how you were a very sociable person.
• Pain is exhausting … You must walk slowly. You have to stop and make an excuse or pretend to look in a shop window so that you can put your hand on the window and rest a moment. It’s humiliating.
• If I go somewhere I have to take a cushion because I can’t tolerate a hard seat for any length of time. That, at my age, is embarrassing, because I’m comparatively young to have my body in this state.
• Pain is frustrating because you can’t do things for yourself … Everything’s a challenge.
• Pain is deep in my side and when it’s really bad I’m not able to breathe deep, because when I breathe in deep it hurts.
• I get very depressed and anxious about it … it’s frightening, especially when you live on your own.
• Pain can make you feel lonely because you feel that you’re the only one who is suffering and can cope with it, and that is a lonely experience.
• I can’t tie shoelaces now, so I’ve just got these slipons and a long shoehorn. You do make these adjustments as you go along.
• I can’t keep my head down to read a book now so I put my book on a music stand. It works brilliantly.
• Thinking in advance. I’m planning my life out, preempting pain … I have a mattress behind my settee in my front room and I’ll just have to lay that on the floor, in case I can’t get up the stairs.”
Person C has a condition predominantly experienced by women and wants to find alternative treatments for it.
“I have been a sufferer of fibromyalgia for nearly three years now. The pain is constant and excruciating, but you can’t really show that, can you? I’ve been hospitalised for weeks at a time (both in the UK and in the US), and I have seen three GPs and four consultants (neurologists and rheumatologists). I have been prescribed OxyNorm, OxyContin, Lyrica, Cymbalta, Savella, Amitriptyline and took part in a trial for a French drug call Ixel. Not one of these drugs helped decrease the pain I have, and the trial drug caused problems with my heart. The women in the clinic I go to now have really lost faith with doctors and so have I really. So, I am now going to a homeopathic practitioner and doing my own research.”
What conclusions do you draw from reading these stories? What impressions do you have of the people? How are they dealing with the situations they face? Jot down your thoughts in a notebook.
You will have seen from these stories that the circumstances which bring pain do something else too – they create a strong risk of our becoming dependent on anybody associated with healthcare because chronic pain makes us feel vulnerable and even hopeless. We think, ‘They must know more than us,’ so we often accept, uncritically, what’s on offer. We take drugs without really knowing what effects they should have, their expected results and timescale, or their review period, because they may not help us as they have others. Many participants in pain clinics tell us that they didn’t ask about what the impact (or side effects) of their treatment might be. Many treatments are only partly effective; when pain continues after treatment, there are often limited options. And without knowing the detail of their condition, people hear about alternative or new treatments but have no way of knowing whether each is of value for them. Chronic pain continues.
People with chronic pain can inhabit a world of uncertainty, anxiety and often isolation. In turn, this can create a depressing downward cycle into hopelessness, particularly if they don’t have a good relationship with their doctor. When people are isolated or depressed, there is another important consequence to their pain – it changes how they think. They become more negative perhaps, can’t see opportunities, stop using new information well, or stop laughing or appreciating the humour and absurdity in their situation. Anything new can become a cause for more anxiety and deeper depression.
You may have had contact with well-meaning folk who, unwittingly, tell you to ‘try to stay positive’ when things are bad. Or those who say they are concerned but whose eyes glaze over the moment you try to explain how you really feel. Even worse are those who appear to be encouraging but whose questions (‘Why did you wait this long for surgery?’) imply that, somehow, your problems are of your own making. Sometimes being with ‘sympathetic people’ ends up making you feel worse than ever! Living with pain can be unbelievably wearing and disheartening. Anxiety and depression make things worse. At best, pain is annoying and inconvenient. But it can also be frightening and severely limiting. Powerful drugs and pain management techniques are all around. But they don’t necessarily work for everyone, every minute. And the more you use some of them, the less effective they become.
So, for the last 60 years, clinicians and researchers who specialise in treating pain have been rethinking what can be done.
One key step forward has been evidence that the old view – that pain levels are determined by the extent of your injury or disease – is wrong. We now understand the mechanics through which psychological factors have a significant effect on the body. People differ, and two individuals with the same condition may experience pain very differently. We know blanket drug treatments for pain don’t work for people with chronic pain. Pain science now emphasises personalised solutions. Knowing how your brain and nerves work together, the importance of your perspective, how you react and the pain control tools that work for you will reduce your pain and limit the impact it has.
Reading this book will help us to learn what our pain really is and how to become a pain manager ourselves.
A Personal, Self-managed Pain Improvement Plan
Telling people with chronic pain to ‘take control of your situation, manage the pain and learn to cope better’ always prompts the question ‘How?’ It can also provoke frustration and appear glib if the person giving advice hasn’t suffered themselves. Some people feel criticised and take personal offence, such as the person who told me about their recent visit to hospital: ‘I have enough problems – I need help, not to be told I’m being weak if I don’t do something about it myself.’
This reaction may be understandable, but we need to move past it in order to understand how you can manage pain effectively through self-management. Almost certainly you are coping with your pain ‘as best you can’, but modern pain management might improve your ‘best’. It involves systematically looking at how you experience pain and recognising the situations, times and contexts when it is worst – knowing what causes the pain and what risks making it worse. It involves learning about the dominant role of the brain and central nervous system, their effect on how you feel and how to change those effects.
To manage chronic pain, you need to:
Understand yourself and how you really deal with your pain. First, know yourself, take responsibility for your own condition and don’t allow others (not even your doctors and nurses) to take over.Treat self-managing pain as a job, collecting information about what you experience, learning about why it happens, exploring what solutions have worked for others and trying them out for yourself, and discussing your conclusions with others.Make sure you spend time doing things which make you feel good, rather than just dealing with problems or the less good aspects of life; manage any tendency to think negatively; keep the things which make you feel happy and secure always in your mind and value them.Plan and organise your life, taking account of the inevitable recovery time you need but making room for activity to build the potential for your recovery.Know what tools, aids, techniques or equipment can make life easier.Then, make a basic, personalised pain management plan to start taking back control of the pain and boosting your resilience. Remember to ‘keep it simple’. You can develop it later, as you make progress.Creating a plan is a vital first step to making pain control a reality. But don’t rush into creating your personal plan until you’ve got to grips with the ideas presented in Part One.
The start of your pain management planning must involve gaining more knowledge – understanding how the pain is triggered, its effects on you, what your nervous systems are doing and how to get your immune system to produce a calming effect. But managing pain and the underlying illness causing it requires more than just knowledge. You will need also to learn to do things differently, from special breathing and movements, to pain minimisation techniques, planning your day, controlling your emotions, avoiding automatic pilot thinking, using pain-friendly tools, and much more. There are four main steps to building the plan:
First, review your situation. Use a notebook or diary to record your pain and its effects; factors which are likely to affect the severity and impact; your general well-being and sources of help. The questionnaires on the next few pages will help you get started.Second, read Part One of the book to inform yourself about how pain mechanisms work and how your perceptions and thoughts affect them.Third, read Part Two, which highlights factors that pain patients say affect their ability to self-manage pain. If you make a note of things you need to work on, ideas you would like to explore and what the questionnaires may tell you about yourself, you will have the raw material for your plan.Fourth, increase your options about what self-managing pain can mean for you. For example, keeping a pain diary and using the Pain Management Wheel will help you to craft your pain management plan.Finally, discuss your ideas with friends, other patients and your medical team, to be sure what you can do yourself safely, and how they can help you to monitor progress.Assessing Your Own Pain
A review of your situation is the first step towards taking control. Here are two short questionnaires that ask you about your life and the pain you have. Used extensively in pain clinics, they are often very helpful – so take sufficient time to complete them carefully. No scoring is involved with the first one – its purpose is to encourage you to think things through and make notes for a discussion with your doctor or medical adviser. There is a scoresheet for the second questionnaire, which you should complete before moving on to Part One of the book.
QUESTIONNAIRES
Before you begin, recognise that people often complete questionnaires in ways that describe what they want others to think – instead of how they really feel. That will do you no favours here – be honest with yourself. Also, because others can see things we don’t, you might want to check your answers with someone you trust.
Questionnaire 1: Assess Your Pain
There is no pass or fail score with this questionnaire, because it was designed to record how you feel at this stage and provide information for discussion with your doctor. Conversations with your medical adviser will be more useful if you can discuss specific, tangible information about what has happened to you.
Write your responses to this questionnaire and other activities from the book in a notebook specifically for pain management. We’ll look more at how you can use it towards the end of Part Two.
Mark your responses to each question, using the scales below:
How bothersome has your pain been in the last few days?
How intense is your pain now?
How intense was your pain, on average, last week?
* * *
Now please use the same method to describe some effects of the pain.
How distressing is your pain to you now?
How distressed has it made you, on average, over the last month?
To what extent does your pain interfere with your normal daily life?
* * *
To what extent do you agree or disagree with the following statements?
In the last few days, I have dressed more slowly than usual because of my pain.
In the last few days, I have only walked short distances because of my pain.
It’s really not safe for a person with a condition like mine to be physically active.
Worrying thoughts have been going through my mind a lot of the time in the last few days.
I feel that my pain is terrible and that it is never going to get any better.
In general, in the last few days, I have not enjoyed all the things I used to enjoy.
* * *
If you have had any treatment for your pain, how much has this taken away the pain?
If you have someone with you who knows how to help deal with your pain, how well organised are they?
(If you don’t have anyone with you who helps, skip this and go to next question.)
To what extent do people you see really help with your pain?
How much do you find yourself thinking about your pain?
When you try to do other things, how does it feel?
Overall, pain aside, how do you feel things have been going in your life?
How frequently do you feel stressed?
Do you have any idea what a C fibre does?
(If not, don’t worry, we’ll discuss them later.)
Questionnaire 2: The Effects of Chronic Pain
This second questionnaire concerns the effects of pain and difficulties you have coping with the condition that causes it. It will help you to think about your plan of action and ask what is really best for you. Information about scoring the questionnaire is given afterwards.
For each of the statements below, circle the number which most closely reflects how you have been feeling in the past week. Ignore which column (A or B) the numbers are in. Don’t take too long over your replies: your instinctive answer is best. You will be able to score and interpret your answers using the scoring sheet on page 27.
