Living Life with Persistent Pain A guide to improving your quality of life, in spite of pain
Contents What is Persistent Pain? 1 The Science Bit 2 Pain & Stress 3 Coping with Stress 4 The importance of Pacing 6 Goal Setting 9 Movement & Activity 12 Managing flare-ups 15 Sleep Difficulties 16 Communicating with Others 18 Medication 20 Further information 21 Produced by Portsmouth Persistent Pain Team, Solent NHS Trust [GC & RM 25/10/12] 1
What is Persistent Pain? Persistent pain is usually defined as: Or Pain that continues for more that 3 months after the usual recovery period for an illness or injury, Pain that continues over months or years as a result of a chronic condition Millions of people in the UK are affected by persistent pain. It can have a huge impact on your quality of life and can affect the lives of your family and those around you. This booklet covers a number of techniques that can help you to manage your pain more effectively. By incorporating these into your daily life, we hope that you will be able to reduce the negative impact that your pain has upon you and improve your enjoyment of life. By now you ve probably been told a dozen or more things that will help. Well this does! Take what you need, ignore what you don t and I promise you ll have a better life Steve 2007 2
The Science Bit Sometimes people will be in constant pain because of their condition (for example: arthritis, degenerative musculoskeletal problems or fibromyalgia). In other cases people remain in pain following an injury from years ago that has healed up but is still causing problems. For some people there is no obvious trigger or cause for their pain. Whatever the cause, when people are in pain for a long time, there are biochemical changes that occur in the body, which result in our pain system becoming over sensitised. Essentially, the chemicals associated with pain stay around too long and our nerves become hypersensitive. This means that the smallest stimulation will trigger the system and result in pain. Somebody bumping into you in the supermarket, for example, can trigger the system and be very painful. We know this happens in persistent pain, but we don t know why. Currently, there is a lot of research going on into the mechanisms and maintenance factors of persistent pain. We now know that many different parts of the brain are involved in processing pain, including those areas that are involved in processing stress and emotions. We don t have all the answers yet but there is a lot you can do yourself to help. 3
Pain & Stress Living with persistent pain can be very stressful and can often lead to increased anxiety and tension, which can make pain worse. In addition life stresses, e.g. work, financial or family problems, can also impact on our stress and impact on our pain and ability to deal with it. Learning different ways of dealing with stress, therefore, is very important as a vicious cycle can occur: pain stress anxiety tension It is easy to say just relax, but it can be very hard to relax when you are facing a lot of difficulties in life. There is a technique called mindfulness that is often used with people with chronic pain and it can be very helpful for managing stress and tension. It is a technique that needs to be learnt and practised. There is a separate information sheet about mindfulness and advice on where to get further information at the end of this leaflet. 4
Coping with Stress Some people notice that when they feel stressed and tense this can make their pain worse. Therefore, developing skills to manage stress can help improve wellbeing. Often when we experience stress for long periods, we can become used to it and are not always aware of how it is affecting us. Therefore it is important to know what stress is, and how to recognise it. What is stress? Most of the time we are able to cope with the physical and emotional demands of daily living, family, friends, work etc. However, sometimes, if we feel unable to cope (due to increased pain, or excessive demands), we become stressed. This makes us irritable, over-emotional, angry or frustrated. Unfortunately, persistent pain can contribute to stress and stress also contributes to pain through central nervous system changes. Some suggestions on how to cope with stress: There are several things you can do to help you cope when you become stressed. If your mind feels full of things to do, or lots of worries, you may find it helpful to try these: Use mindfulness exercises (see separate information sheet) Talk to someone who will listen and understand. Write down the things you need to do. Work through the list by focusing on one item at a time. If you notice you are thinking about several items at once, bring your focus back to one item (this may help to stop you going over and over it in your mind). Finding out where you can get help and not being too proud to ask! Use pacing (see next section) to help you manage your tasks. Be patient and kind with yourself. 5
The importance of Pacing What is it about? Pacing is a technique that you can use to gradually increase your activity levels People with persistent pain tend to have some relatively good days and some very bad days. On good days, people often try to catch up with jobs to be done, things around the home etc and then on bad days they do very little. Over time, the bad days often become more frequent and the good days fewer. Pacing can help you break this pattern and gradually increase what you are able to do. Nearly all activities can be paced, the difficulty is that we are not used to doing things a bit at a time, we like to get jobs done all at once. Pacing is not easy, but it can really help! How to do it There are two ways of pacing your activities; listening to your sensations to determine breaks and chunking activities. These can be used separately, or together: Do you always push through your pain? When you have lived with pain for a long time, you may tend to ignore the build up of pain until it is so severe that you cannot go on. This results in the crippling payback when you can do very little. It may help to listen to your pain and to take breaks during an activity when you notice that your pain is increasing. For example e.g. if you have been sitting down for 30 minutes, then stand up and move around, or if you have been walking and your pain is increasing, then sit down or lean on something, if you are standing still then either sit down or walk around. Do you always rest or lay down to reduce your pain? People are often led to believe that when you are in pain then rest is good. However, when you have persistent pain this can have a negative effect on our strength and flexibility and can often make things worse in the long term. For example spending prolonged periods in one position can lead to stiffness and increased pain when you start moving again. It is 6
therefore important to have regular movement and activity, in spite of our pain. Planning and chunking activities: It may be helpful to look at your week ahead and try to arrange things so that you can achieve a more balanced approach. For example, choose one or more tasks or activities that you want to do, such as, hoovering, cooking, gardening, decorating a room. Take each activity and break it up into chunks (e.g. hoovering one room each day or gardening for 15 minutes per day), and stick to your plan! You might find it helpful to mix up different types of activities, e.g. doing a sitting job followed by a standing job. This way you will still get things done in the long term, whilst preventing your pain from building up to the point where you can do nothing. Explain to others what you are doing and why you are doing it, so that they don t finish what you have started! Remember pacing is very hard to do as you are trying to change the patterns of a lifetime. But, it really does work if you apply it fully and ultimately helps you to do more! Pacing takes practise, it does work in keeping your pain manageable and you achieve more eventually Sharon 2007 Goal Setting Lives are affected in many ways by persistent pain. People give up valued activities, doing things they enjoy, going out etc. This is sometimes because they are afraid of making things worse and because of lack of confidence. Goal setting is similar to pacing in that it breaks things down into manageable steps, so that you can gradually build up your activities. 7
Goals are things you want to achieve, e.g. going to the cinema, out for a meal, walking the dog, meeting friends, getting back to work. They can be short term or long term. Three essential rules for goal setting: Be realistic and make sure it s achievable! Make sure it s measurable, Pick something that is important to you, something that you value in life For example; I want to improve my walking ability, so that I can walk to the shops independently (important to me). I know I can walk to the end of my drive and back (achievable), therefore I am going to do this once a day (measurable) and each week I am going to increase the distance so that I am more independent. How to goal set: Decide upon your goal. Think about and make a list of all the things you need to do to achieve this goal. If, for example, you wanted to go swimming, your list may look like this: Does my local pool have times for people with disabilities that I may wish to use? Will I go with someone or on my own? How will I get to the pool and home again? Can I manage to undress and dress on my own? Do I need help with any of the above, and from whom? What do you want to achieve? Be clear about what you want to achieve. For example, I want to be able swim for 20 minutes. The example overleaf shows you how to use a ladder to plan out the steps to achieving your goal. Use this ladder together with the pacing techniques described above to help you gradually build up towards your goal. 8
The key to success using a goal setting ladder Do not move to the next step until you are entirely comfortable with the step you are on. Remember each small step adds up to a larger step! GOAL! Swim for 20 minutes Swim for 10 minutes, stop for 3 minutes, swim for 10 minutes Swim for 10 minutes, stop for 5 minutes, swim for 7 minutes Swim for 7 minutes, stop for 5 minutes, swim for 5 minutes Swim for 5 minutes, stop for 5 minutes, swim for 3 minutes What I can do now Swim for 5 minutes 9
Movement & Activity If we injure ourselves it is important to rest in order for the tissue to heal. Pain will stop you using a sprained ankle for example, while healing occurs. With persistent pain however, pain is continuous and may stop you moving about and exercising which results in our muscles and joints stiffening up and thus becoming painful themselves. This is known as the Pain Cycle : Pain strain on joints weight gain weak muscles less movement stiff muscles/ joints more pain less movement If you have persistent pain, you may be worried about doing exercise, but it is important to remain as active as possible. For example if you are able to keep your muscles and joints well conditioned this will prevent the development of secondary muscular and joint problems. Exercise should be within realistic limits to maximise its benefits. It will help: Keep your muscles and joints conditioned Improve your mobility Improve your blood circulation 10
Improve your sense of well-being and stamina Improve your posture Reduce pain in the longer term Remember! Muscles that have not been used for a while may be painful at first. If you are unsure, it may be advisable to seek advice from your doctor or a physiotherapist about an appropriate exercise programme that will allow you to gradually build up your strength. As you become stronger, you will be able to do more exercise. 11
Managing Flare-ups No matter how well you pace yourself, from time to time you may experience increased periods of pain, which we call flare-ups. They may not last very long, but can come quickly and without any identifiable cause. If this occurs it may be helpful to: Accept that this is a flare up, which is a part of your condition and it will pass. Be kind to yourself and do what you need to take care of yourself. Try to keep up some of your usual activities 12
Sleep Difficulties People with persistent pain often have great difficulty getting to sleep and/or waking during the night with pain. The harder you try to sleep, the more difficult it becomes. Bad sleep habits can also make the problem worse. Lack of sleep tends to make you irritable, affects your concentration, and increases your stress, all of which make it even harder to sleep. Try some of the following the tips below to help break this pattern. Make sure your sleeping environment is calm: try not to eat, read (unless it helps you sleep) or watch TV in bed. All these things are stimulating and generally not helpful. Avoid tea, coffee, alcohol and cigarettes before bed (3-4 hours if possible). Stick to a regular bedtime and getting up time. Sleep patterns are habitual; if you lie in too late after a bad nights sleep, you will have trouble sleeping the following night If you choose to sleep during the day then you can expect to get less sleep at night. If it is important to you to sleep better at night then cut out day time naps. It is important to get some fresh air and activity every day as this also helps with sleep at night. Try practicing mindfulness techniques to help aid relaxation. 13
Communicating with Others Living with persistent pain can lead to a loss of confidence and feelings of isolation. It is often difficult to express your needs clearly through fear of not being understood or guilt etc. This can increase tension, pain levels and feelings of isolation. People know how they want to be treated by others (normally, with respect etc), but the way in which they communicate often leads to misunderstanding and increased tension. Use the tips below to try and improve how you communicate with others, in an assertive and clear way: Try to talk through any issues and concerns when you are calm, not when you are feeling stressed. Allocate some time to talk that will be distraction free and a time that suits both of you People cannot read your mind, so be clear! Keep your voice low and calm Ask for help when you need it, don t let pride get in the way of improving your relationships. Explain your needs explain what you are trying to do and what you would like them to do to help you Listen to other people s points of view To improve my life I have learned that communication is vital. Family and friends are not mind readers, unless you tell them what you feel or need things won t improve Sharon 2007 14
Medication There is no medical cure for persistent pain and medication is used to try to reduce the symptoms of pain. Current guidelines suggest that medication is to be used in combination with other approaches, including psychology and physical activity. Do you know what you are taking and why? Ask your doctor to explain what your medication is, what it s for and how to take it. The British Pain Society website at the end of this leaflet provides useful information about medication for chronic pain. Don t just put up with bad side effects! Talk to your doctor about any problems you are having. 15
Further information: Websites: British Pain Society: http://www.britishpainsociety.org The Pain Toolkit: http://www.paintoolkit.org/ Pain Concern: www.painconcern.org.uk Resources on mindfulness: http://www.getselfhelp.co.uk/mindfulness.htm or http://breathworks-mindfulness.org.uk/ Self-help book: Dahl, J. & Lundgren, T. (2006). Living beyond your pain. New Harbinger. Finally Managing life with persistent pain can be very hard. In this booklet we have outlined different ways of dealing with pain, however many people need support with putting these into practice. Such support is best given by health professionals who have been trained to understand persistent pain, e.g. at specialist pain management services. 16