Eastman Dental Hospital About Face Pain management programme Facial Pain Team
If you would like this document in another language or format or if you require the services of an interpreter contact us on 020 3456 1053. Contents What is chronic facial pain? 3 What are the effects of living with chronic facial pain? 4 The About Face pain management programme 6 What does the programme include? 7 Taking part 11 References 12 For further information 12 How to contact us 14 2
This booklet has been written by the Facial Pain Team based at The Eastman Dental Hospital. The team is made up of facial pain consultants, clinical psychologists, physiotherapists and nurses. This booklet is intended for use by patients (or their family and carers) under the care of the team at this hospital. It is not intended to replace discussion with your specialist. The aim of the booklet is to provide information on the About Face facial pain management programme. Please do not hesitate to speak with a member of our team if you have any questions, we will be happy to answer them for you. What is chronic facial pain? Chronic facial pain refers to facial pain that has been present for more than three months. It does not refer to how intense the pain is. People can experience pain in the muscles and joints around the jaw, the teeth, the mouth, around the eyes and nose as well as the head and scalp. Sometimes pain or discomfort is also felt in nearby areas, such as the neck and shoulders. 3
Sufferers of chronic facial pain can also experience other symptoms such as numbness or tingling in their face or head or both. Unlike acute pain (the initial pain you get when you hurt yourself) chronic pain does not usually mean there is any ongoing tissue damage. The experience of pain however is ongoing. Chronic pain results from a number of changes that occur in the nervous system. This is where the body processes pain. These changes cause the nervous system to become over sensitive. Pain signals continue to be generated when no tissue damage is occurring. Although chronic facial pain may improve with time a cure may not be possible. What are the effects of living with chronic facial pain? Chronic facial pain can affect people in different ways, for example by: Avoiding activities which increase pain, such as talking, eating or singing. In the long term this can make things worse. By not using the jaw and mouth as much, muscles become weaker and stiff. This leads to greater 4
pain when resuming these activities. Increased pain may cause you to worry about the cause of the pain or about causing damage. Feeling isolated, angry, frustrated, low in mood and lacking in confidence. This can be as a direct result of experiencing pain for a long time. It may also be because pain makes it harder to do enjoyable and meaningful things such as socialising or working. Worrying about their pain, particularly if they do not understand it. Worry and anxiety can be unpleasant and can focus our attention on the pain making us even more aware of it. Difficulty sleeping. Sleep can be disturbed by pain and also other difficulties associated with chronic pain such as feeling worried or low in mood. Pain can often make relationships and friendships more difficult. This can be because pain is invisible to other people. It can be hard to explain what it is like to live with chronic pain and those who want to help you may not know how. There may also be many other ways in which pain affects people and their lives. 5
The About Face Pain Management Programme This is a programme specifically for people with chronic facial pain. It is run by a clinical psychologist and a physiotherapist from the Facial Pain Service. The aim of the programme is to reduce the impact that chronic pain has on you and your life. This is achieved through building on existing skills and learning new skills. Using a selfmanagement approach, the programme focuses on helping you learn ways to manage pain yourself. This means that you can continue to benefit from these skills long after the programme has finished. The programme does not aim to stop the pain. Chronic pain cannot always be cured by medical treatment. Therefore, it may be helpful to consider ways to live as well as possible with the pain, rather than waiting for it to go away. Many who have attended the programme report positive changes in their activity and mood. They often say they feel more confident in managing their pain, particularly at times of intense pain or flare ups. Some people experience fewer flare ups, or a decrease in the intensity of their pain, when they use these pain management skills in their daily life. It is usually not helpful for people to attend the programme if they are planning to try further medical treatments (other 6
than medication). You should discuss this further with the psychologist. What does the programme include? The About Face programme is a cognitive behavioural pain management programme. These types of programmes have been shown to be one of the most effective ways to help people manage chronic pain and to reduce the impact it has on them and their lives. Pain management programmes like About Face involve much more than just talking about the pain. Cognitive behavioural pain management programmes look at the relationship between thoughts, feelings, behaviour and what is happening in the body, including pain. The programme covers many topics, including: Understanding chronic facial pain You may already know a lot about chronic facial pain, but further discussion and information given in the About Face programme can help to increase your knowledge. Understanding more about your pain can help to reduce any worries and increase your confidence to do things despite your pain. Understanding your pain will also help you to talk to others about it in a way that will help them to increase 7
their understanding of the pain and how they can support you. Moving and stretching You will learn stretching exercises for the whole body, including the mouth, jaw and face. You will be helped to find a level of movement to begin with which does not significantly increase your pain. Stretching in this way will help you to gradually improve flexibility, reduce muscle tension and feel more confident about moving. Thoughts and feelings You will learn about the impact that thoughts have on mood and behaviour and develop techniques to recognise and change thoughts that may have an unhelpful effect on your mood. Talking about thoughts and feelings on this programme does not mean that we think that your pain is in your mind. You have real pain that may be having a detrimental effect on your mood. 8
Pacing Pacing will help you to gradually work towards doing activities which previously increased your pain, such as eating or talking. You will be helped to identify a level at which you can do an activity without increasing your pain and supported in gradually increasing this. Pacing can also be used to balance out your activity levels so that you, not your pain, decide how much you do. By using pacing you may find that you can do more without increasing your pain. Relaxation You may notice that your pain increases at times of stress or anxiety. Learning relaxation techniques can help you to manage these difficult times. They can help reduce tension, reduce the effects of stressful times on you and your body and help to slow down the spiralling effects of anxiety, tension and pain. Dealing with increases in pain Chronic pain tends to go up and down in intensity. Sometimes you may be aware of what increases your pain; other times you may not be able to identify any triggers. These flare-ups in pain are normal but can be hard to manage. During the programme you will learn skills to use during flare-ups. These skills will help you to manage a 9
flare-up more confidently. Depending on the needs of the group, the programme may also focus on how to improve sleep and how to communicate effectively with others about pain. It is normal for each person in the programme to find some of these elements more relevant than others. When applied together and with the support of others who experience similar difficulties, the About Face programme can help you to feel more confident in managing your pain. As a consequence of feeling more confident about managing your pain you may begin to experience improvements in your mood, social life, fitness and your ability to do activities despite your pain. The team who facilitate the programme are there to help guide you towards achieving your goals. The team do not set your goals for you because only you know what you would like to be doing and feeling despite your pain. There may be similarities but also differences between the goals or people in the group. Whatever your goals, the skills discussed about will help you to move towards them. 10
Taking part The programme runs for six half-days (usually afternoons) spread over six weeks, with follow-up sessions one month, six months and one year after the programme has finished. It is a group programme. The other members of the group will also have facial pain. Group size is usually between 8 and 12 people. As it is a self-management group, the focus is on your goals. It is not a therapy group and you will not be asked to share details of your personal life in the group that you are not comfortable with. We ask everyone in the group to respect other members confidentiality by not discussing personal details outside of the group. To attend the programme you need to be referred to the physiotherapy and psychology service by a doctor at The Eastman Dental Hospital. You would then be invited to an information session in a group. You need to attend this session before attending an individual appointment with one of the clinical psychologists to discuss your needs and decide if the About Face programme is the right option for you. If not, we will discuss other options with you. If you come to the About Face programme it is important that you attend each week and practice the strategies between sessions. Attending the programme requires 11
commitment and the more you put in the more you will benefit from the programme. References Eccleston C, Williams ACDC, Morley S. Psychological therapies for the management of chronic pain (excluding headache) in adults. Cochrane Database of Systematic Reviews 2009, Issue 2. Art. No: CD007407. DOI: 10.1002/14651858.CD007407.pub2. Cole, F et al. (2005) Overcoming Chronic Pain. London: Robinson, ISBN 1-84119-970-2 Further information Online support for chronic pain patients: http://www.healthtalkonline.org/chronichealthissues/chronic _Pain www.britishpainsociety.org UCL Hospitals cannot accept responsibility for information provided by external organisations. 12
How to contact us Facial Pain Clinic The Eastman Dental Hospital 256 Gray s Inn Road London WC1X 8LD Direct line: 020 3456 1053 or 3456 2314 Fax: 020 7915 1105 Eastman Dental Hospital Switchboard Tel: (020) 3456 7899 Email: facialpain@uclh.nhs.uk Website: www.uclh.nhs.uk 13
Space for notes and questions Acknowledgement: We would like to thank Rajinder Kalsi for designing the picture on the front cover. 14
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Publication date: July 2014 Date last reviewed: July 2014 Date next review due: July 2016 Leaflet code: UCLH/NHNN/FPT/AFPMP/PIL01 University College London Hospitals NHS Foundation Trust 2014 16