Opioids for persistent pain: Information for patients. The British Pain Society's

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The British Pain Society's Opioids for persistent pain: Information for patients A statement prepared on behalf of the British Pain Society, the Faculty of Pain Medicine of the Royal College of Anaesthetists,the Royal College of General Practitioners and the Faculty of Addictions of the Royal College of Psychiatrists January 2010 To be reviewed January 2013

2 Opioids for persistent pain Published by The British Pain Society 3rd floor Churchill House 35 Red Lion Square London WC1R 4SG Website: www.britishpainsociety.org ISBN: 978-0-9561386-1-3 Cover illustrations by Mr Simon Biggs The British Pain Society 2010

Information for patients 3 Contents Introduction 4 About pain 4 Acute pain 4 Chronic Pain 5 Opioid medicines to relieve pain 5 What about the side effects of opioids? 6 What are the long-term effects of taking opioids? 7 What about work and activity? 7 Can I drive if I am on opioids? 8 Is it safe to drink alcohol when I am taking opioids? 8 Will my body get used to opioid medicines? 6 What about addiction to opioids? 9 What if I am pregnant and need opioids? 9 Will I need opioids forever? 9 Starting opioid treatment 10 Assessing treatment 10 What does my health-care team need to know about me and why? 11 What should I expect from my health-care team? 11 How we developed this information 13

4 Opioids for persistent pain Introduction Pain that doesn t go away can cause problems in your life in a number of ways. Specialist health-care teams can work with you to find ways to reduce your symptoms and improve your quality of life. Your health-care team thinks that a group of medicines called opioids may be useful in helping you to manage your pain. This leaflet can help you understand your pain problem and also help you to work with your health-care team to decide if you would like to try opioid treatment. About pain Pain is complicated. Your pain is affected by many factors, including: how you are feeling in general; your previous experience of pain; your understanding of why you have pain, and any worries you have about it; and how you deal with your pain and how your pain affects your life. Pain is usually divided into the following two types: Acute pain Chronic (long-term) pain Both types of pain can be severe or mild the difference is how long you have had the pain. It is useful to divide pain into these two categories because treatments vary depending on the type of pain you suffer from. Acute pain Acute pain is often caused by an obvious injury or painful event. The most common types of acute pain include: everyday headaches and muscle pain after exercise pain from an accident (for example, a fractured bone); and pain after an operation. Acute pain can be severe but gets better over time. Treatments for pain are used for a short time while natural healing takes place, sometimes in hospital but often at home.

Information for patients 5 Chronic pain Chronic pain is pain that lasts for more than three months, and sometimes for years. Sometimes chronic pain starts because of a specific injury. But it is not always clear why people get chronic pain. Common chronic pain includes: continuous pain in the lower-back; pain related to joint inflammation, for example, osteoarthritis; and pain related to a nerve injury (for example, after an operation, or amputation or after an infection such as shingles). Pain that doesn t get better tends to cause distress, tiredness and irritability. Your sleep may also be affected and it can cause problems with daytime activities and moving around. Because of this, it can also affect relationships with friends and family. Chronic pain can be difficult to treat and usually it is not possible to get rid of the pain completely. Your health-care team may be able to offer help in treating symptoms and to help to reduce the effect the pain has on your life. Some types of treatment work better for some people than others and you should be given the chance to try treatments that are known to work well for your sort of pain. You can find out more about chronic pain in Understanding and Managing Pain (British Pain Society 2004) and at www.britishpainsociety.org/patient_home.htm Opioid medicines to relieve pain Opioid medicines either come from the opium poppy or are chemically related to drugs made from opium. Opioids have been used for many years to treat pain. Common forms include weak opioids such as: codeine; dihydrocodeine; and tramadol.

6 Opioids for persistent pain Sometimes weak opioids are combined with paracetamol to make them work better. These combinations include: codeine and paracetamol (co-codamol); or tramadol and paracetamol (tramacet). Stronger opioid drugs include: morphine; oxycodone; methadone; fentanyl; buprenorphine; and diamorphine (medicinal heroin). Opioid drugs can help manage some but not all types of chronic pain. Some types of pain might respond better to other drugs than to opioids. Some types of pain need opioids together with other types of medication. Your team will only prescribe opioids for you if they think they are the best treatment for your pain. It is unusual for opioids to get rid of pain completely. The aim of treatment is to reduce your pain enough to help you get on with your life. Medicines work best if you combine them with other ways of managing symptoms such as regular activity and exercise, and doing things which are satisfying or enjoyable, such as work or study, and social activities. Setting goals to help improve your life is an important way to see if these drugs are helping. For chronic pain you will usually be given a slow-release tablet or an opioid skin patch. This will give you a steady level of medicine which is the best way to manage continuous pain. Your health-care team will adjust the dose to give you pain relief most of the time, and so you don t get too many side effects. Fast-acting opioid drugs and opioids which can be injected are not very useful for managing continuous pain. You should always take the correct dose of prescribed medicines. If you feel the dose isn t enough, or if the side effects interfere with your life, you should discuss this with your health-care team.

Information for patients 7 What about the side effects of opioids? When you first start taking opioids you can get some side effects, which usually stop after a few days. These include feeling dizzy; feeling sick (nausea); being sick (vomiting); feeling sleepy; and feeling confused. These side effects can go on for longer than the first few days. Your health-care team may give you some other medicines to help, such as anti-sickness tablets. If pain has affected your sleep, opioids may help you to recover your normal pattern of sleep, but they should not make you drowsy in the daytime. Opioid drugs can cause some problems when you take them for long periods of time. These problems include: constipation; itching; weight gain; lack of sex drive and difficulty breathing at night. This is most common if you are overweight and if you snore heavily. If you have a condition called obstructive sleep apnoea it may not be safe for you to take opioids. Constipation is a common problem. You may need to try laxatives to treat constipation. If you experience a lot of side effects your team may suggest changing to another opioid drug.

8 Opioids for persistent pain What are the long-term effects of taking opioids? If you take opioid drugs for many months or years it can affect your body in other ways. These problems are more common if you take high doses of drugs for long periods. These problems include: reduced fertility; low sex drive; irregular periods; erectile dysfunction in men (the inability to keep an erection); reduced ability to fight infection; and increased levels of pain. If you are worried about any of these problems, please discuss this with your health-care team. Your team will be able to tell you whether you are at risk of developing these problems. What about work and activity? Once you are taking a regular and steady dose of opioid, you should be able to live a normal life. If you do not feel safe at work or at home, you should let your employer and your family know. You need to speak to your health care team if you are having problems with normal activity. Can I drive if I am on opioids? The law in the UK allows you to drive if you are taking opioid medicines. You should not drive if you have changed your dose or if you feel unsafe. You are responsible for making sure you are fit to drive. The only organisation that can advise you about your legal right to hold a driving licence is the Driving and Vehicle Licensing Authority (DVLA). You should let DVLA know that you are taking opioid medicines. Is it safe to drink alcohol when I am taking opioids? Alcohol and opioids together cause sleepiness and poor concentration. You should avoid alcohol completely when you first start on opioids or when your dose has just been increased. If you are taking opioids, you should avoid alcohol if you are going to drive or operate machinery. When you get on a steady dose of opioid,

Information for patients 9 you should be able to drink modest amounts of alcohol without getting any extra unusual effects. Will my body get used to opioid medicines? Opioids can become less effective with time (this is called tolerance). This means that your body has got used to the pain-relieving effect of the medicine. You can also become dependent on opioid medicines (dependence). This means that if you stop taking the drug suddenly, or lower the dose too quickly, you can get symptoms of withdrawal. If you run out of medicine, you can experience the same symptoms which include: tiredness; sweating; a runny nose; stomach cramps; diarrhoea; and aching muscles. What about addiction to opioids? It is very rare for people in pain to become addicted to opioids. People who are addicted to opioids can: feel out of control about how much medicine they take or how often they take it; crave the drug; or continue to take the drug even when it has a negative effect on their physical or mental health. We do not know exactly how many people get addicted when they are taking opioids for pain relief but it is very uncommon. It is more common if you have been addicted to opioids (including heroin) or to other drugs (or alcohol) before. Addiction may be more common in people with severe depression or anxiety. This does not mean that if you have had an addiction problem before or you are very depressed and anxious you will become addicted. It only means that you are more likely to become addicted than someone who has not had these problems. Most people do not become addicted.

10 Opioids for persistent pain So, if you have had a problem with drug or alcohol addiction in the past this doesn t mean that you cannot take opioid medicines for your pain. However, your health-care team will need to know about your past or current drug-taking to prescribe opioids safely and to help you watch out for warning signs. What if I am pregnant and need opioids? If you take opioids during pregnancy, your baby might have breathing difficulties at birth or symptoms of opioid withdrawal. The symptoms can vary from baby to baby. The baby will need specialist help, though usually only for a short time. If you are taking opioids, you need to talk to your doctor before planning pregnancy. In some situations, you may need to stop taking the opioids, but sometimes they can be continued under medical supervision. If you become pregnant while you are taking opioids, you should talk to your midwife or doctor and you should not suddenly stop taking the opioids. Will I need opioids forever? Some people take opioids for many years. If opioids give you pain relief, you will feel that you rely on them. This is normal. If you want to try reducing your dose, you should discuss this with your doctor and bring the dose down slowly. Many people find that after a few months they can reduce their dose without their pain increasing. Starting opioid treatment Once you have made the decision to try opioids for pain relief, your health-care team will discuss with you the best way to use them to improve your quality of life. It can be helpful to write down two or three things that pain is stopping you from doing. You can then assess how much the opioids are helping you by making it easier to do these things again. Your health-care team will start you on a low dose of opioid (either a tablet or a patch) and give you medicines to help with side effects. It s difficult to know how much opioid you will need so you will be seen regularly. If you are not having side effects, your healthcare team will increase your dose if necessary. Opioids don t work for everyone. If you haven t noticed any benefit after changing your dose two or three times, or if the medicines give you unpleasant side effects, you will be advised to gradually stop the drug. You should only stay on opioids if you notice a very

Information for patients 11 definite improvement in your quality of life. The opioid is not expected to take away all of your pain. It should help your symptoms enough for you to manage some of the things that pain stopped you from doing. Assessing opioid treatment An important part of managing pain is monitoring how you respond to treatment. This helps to make sure you benefit from treatment and do not suffer any long-term unwanted effects. This is very important if you are being prescribed opioid drugs. You may have to be checked regularly by your hospital team or your family doctor (GP). If you visit a hospital team, they will let your doctor know how you are getting on. You will only be able to get opioid prescriptions from one health-care team. When you start opioid medicines, you will usually get your first few prescriptions from your hospital team. You will need to store your opioid medicines safely as they can be dangerous if someone else takes them. Once you are on a steady dose, your hospital team may arrange for your GP to give you further prescriptions. However, your specialist team will probably want to review your treatment. Taking medicines is not the only way to manage continuous pain, and your health-care team may suggest you see a physiotherapist or psychologist. These therapists can help improve your quality of life. The physiotherapist or psychologist may suggest you try to do things a different way or use methods which have helped other people. What does my health-care team need to know about me and why? Your health-care team will need to assess your pain. They will ask where your pain is, what it feels like and what makes it better or worse. It s also important for them to know how the pain affects your life and what sort of things it stops you doing. There are lots of other factors that affect how you feel pain, so they may ask you for more information, including questions about: your medical history; your family and home life; and your work, pension or benefits. All of this helps your health-care team understand you and your circumstances. All medicines used for controlling pain have side effects and can affect other drugs. So, it is very important for you to tell your health-care team (including your pharmacist) about

12 Opioids for persistent pain any other prescribed drugs you are taking. They will also want to know about any other medicines you buy in the chemist or supermarket. It is also important to know about recreational drugs such as cannabis or ecstasy. You will also need to let the team know if you are being treated for any other condition. They will ask you about your drinking and smoking habits. Some health-care teams regularly test your urine for drugs. This information will not affect the treatment you are entitled to but it will help the team treat you safely and effectively. What should I expect from my health-care team? Pain is a very personal experience that can be difficult to explain to other people. Many patients with pain feel that they are not taken seriously. Your health-care team are used to dealing with people in pain. You should expect your health-care team to: listen to you when you describe and explain your pain; show that they have understood what you have said to them; and give you the explanations that you want and need to understand why you have pain and how your pain can be managed. You and your health-care team can work together to make the best decisions about your treatment, based on up-to-date scientific and clinical evidence, to make sure that your pain is treated as effectively and safely as possible.

Information for patients 13 How we developed this information The following people helped to prepare this information leaflet. Chair of the group and editor Dr Cathy Stannard The British Pain Society Members of the group Dr Gillian Chumbley The British Pain Society Dr Douglas Justins Faculty of Pain Medicine, Royal College of Anaesthetists Dr Judy Myles Faculty of Addictions, Royal College of Psychiatrists Dr Richard Potter Royal College of General Practitioners Dr Karen Simpson The British Pain Society Dr Amanda C de C Williams The British Pain Society The group has also worked with other specialists to produce another booklet Opioids for persistent pain: good practice. This is aimed at health-care teams for use with this leaflet. We were helped substantially by patient organisations and individual service users who commented on and contributed to the document. This patient information leaflet and the recommendations for health-care professionals are part of a series of publications about managing pain. You can get these from the British Pain Society, either by writing to us or from our website at www.britishpainsociety.org.

14 Opioids for persistent pain

Information for patients 15

Churchill House - 35 Red Lion Square London WC1R 4SG UK www.britishpainsociety.org info@britishpainsociety.org Company registered in England and Wales and limited by guarantee. Registered No. 5021381. Registered Charity No. 1103260. A charity registered in Scotland No. SC039583