Help and support Helpline Information and leaflets 12 steps towards pain control If you would like to discuss your kidney diagnosis with our trained members of staff ring the free to call number 0800 169 0936. The Helpline is open Mon-Fri 9am to 5pm Or you can E-mail us [email protected] These 12 steps summarise the experience of people who have learned to cope, and to live well despite pain. This is not a sequence, in which you work at step one, and when you finish you go to step two.Each step represents a different area of your life and your pain problem, and you can work at all areas at the same time in order to make progress. 1 - Accept the fact of having long term (chronic) pain If you have had appropriate and adequate medical tests, and the cause of your chronic pain is understood, and nothing can be done about it, then the challenge is to accept the fact that you have this problem and make the best of life despite the pain. It may not help to stop doing things you enjoy and it can be expensive and disappointing to find a cure which may not exist. It is worth remembering that expensive, unproven therapies such as homeopathy have no clinical evidence of benefit. Try to feel confident that there is much that you can do for yourself, and the more you do, the less pain will dominate your life. 2 - Set specific goals for work, recreation or hobbies and social activities toward which you can work These goals are things you actually want to accomplish. They will keep you busy, bring you satisfaction and occupy your mind. If you want to have a job or need an occupation, then you can work at getting and keeping one. If you do not need an actual paying job, then try to have some worklike activity that gives you a sense of accomplishment, whether as a volunteer or in some other capacity. For fun and a change of pace, it can be helpful to have a regular hobby or recreational activity. Social activities and interaction with family and friends may help with emotional support. You need to be very specific in what you want to accomplish in these three areas, and work toward these goals in a deliberate, step-by-step manner. 3 - Let yourself get angry at your pain if it seems to be getting the best of you Try not to take your anger and frustration out on your family or others around you. Do not take it out on yourself, blaming yourself. Use your anger at the pain as a source of motivation to pursue the goals you want to accomplish and to use the other steps as a means of achieving these goals. By doing so, you will turn your anger into an effective means of conquering pain, in that the pain may still be there, but you will have managed to live a satisfying life. 4 - Take your painkilling medications on a strict time schedule, and then taper them off Long-term use of some powerful painkillers leads to tolerance (they do not get rid of the pain), physical dependence and addiction, and also has unpleasant side effects. Narcotics (powerful painkillers like morphine) taken “as needed” in chronic pain states tend to have the paradoxical effect of maintaining pain at an abnormally high level, as well as keeping you more mentally dull and irritable than you want to be. Most people with chronic pain function better when they withdraw in a gradual and systematic way from narcotics. Non-prescription (over the counter) painkillers, when consumed in large amounts for long periods, can have serious side effects. If you do not get some pain relief from the recommended doses, then stop taking them as well. 5 - Get in the best physical shape possible, then keep fit In order to work at and achieve your goals for work or worklike activity, recreation and social activities, you need to be in sufficiently good condition that pursuing them will not increase your pain. Try to begin a gradual, progressive conditioning programme, ideally one that is prescribed just for you and which takes your medical situation into account. This conditioning may be more effective if it includes some vigorous exercise (like aerobics), not only to improve your endurance, but because of its beneficial effect on raising your pain tolerance while helping to discharge the tensions which develop each day from having to cope with pain. As part of this conditioning you will also need to reduce the intake of stimulants such as caffeine and nicotine because they contribute to muscle irritability and tightness and thus make pain worse. Click here for more information on ‘Keeping fit on dialysis’. 6 - Learn how to relax, and practice relaxation regularly Use whatever relaxation techniques work best for you. Then you will be able to avoid muscle tension, which makes pain worse and tends to tire you quickly. When you take breaks to pace yourself, these relaxation techniques can be very refreshing and helpful in restoring your energy level. With some of them, such as self hypnosis and imagery, you can block out pain. Many people can “split their awareness” so they do not feel the pain, although it is still there somewhere. As with the physical conditioning exercises, it is best to aim for daily relaxation in order to maintain your proficiency and get the benefits. 7 - Keep yourself busy The reasons for having specific goals for work, recreation or hobbies and social activities is not just to bring you satisfaction, although that is very important. It is also to have plenty to do. You need to keep busy so as to be involved in what you are doing and not in your pain. When you are absorbed in these activities, you are not dwelling on the pain, and it cannot bother you as much. You are keeping your attention focused on things outside yourself, and so are not noticing the pain. Whenever the pain seems to start getting the upper hand, immediately change what you are doing and thinking about. “Move your muscles, change your thoughts”, and switch from one activity to another. Some people get help from distracting themselves in other ways, such as listening to the radio or watching television in bed at night, avoiding lying awake and worrying about pain. 8 - Pace your activities Learn how much you can do before an activity causes pain, or makes it worse. Then learn to stop before the pain increases. Aim to let yourself relax completely at least twice daily. At other times, switch from one activity to another so that different muscles and different kinds of mental activities are involved. At still other times, you may repeat certain of your other exercises, such as back exercises. The principle here is that remaining in one position or repeating one particular activity too long can result in increased awareness of pain. Following a schedule to change activities regularly will allow you to pace yourself better, and YOU will be able to accomplish a lot more and be absorbed in what you are doing and yet not have any worsening of the pain. 9 - Persuade your family and friends to support only healthy behaviour, not your pain Do not get people into a habit of asking about your pain or offering to do things for you that you can do yourself. You should not use your pain as a way of bullying others, making them feel guilty or getting out of things that you should be doing. When people fuss over you for being in pain, it may keep you involved in your pain and the limitations that brings, and both seem worse. 10 - Be open and reasonable with your doctor Your doctor would be very pleased to be able to get rid of your pain if that were possible. Discuss with your doctor whether pain relief is likely to be effective and if they do not feel that it will be, understand that this may be the reality of the situation. It may be helpful to make sure that there is a period re-evaluation of the pain problem to make sure nothing is being overlooked and that the pain is not part of a progressive disease. This will from an opportunity to be kept up dated on new developments in pain treatments that might help you. Remember that chronic pain is not an emergency and pain flare-ups can be kept to a minimum better by following these 12 principles . A second opinion from another doctor may help, both because diagnoses are sometimes missed, and because agreement from more than one doctor about your case may help you have faith in your medical care. Do not be afraid of asking for a second opinion, doctors generally do not mind this! 11 - Practice effective empathy with others having pain problems Support groups for people with painful medical conditions may exist in your locality. However, not everyone finds talking about pain with other people helpful. If you meet with others in a support group, be positive and concentrate on how people have coped with their pain. Groups of patients can lobby for more governmental support for pain research and can support private organisations which are engaged in research and educational activities. 12 - Remain hopeful From time to time you may feel worn out and discouraged, and this is to be expected. But the feelings will pass, especially as you change your activities and your thoughts. It also helps to remember the wide range of ongoing pain research, which will undoubtedly continue to yield new understanding and breakthroughs. There may have been many great advances in the past fifteen years and some pain conditions which had previously been untreatable are now routinely treated with great success. There is every reason to remain optimistic. Download this information in PDF The National Kidney Federation cannot accept responsibility for information provided. The above is for guidance only. Patients are advised to seek further information from their own doctor.