What is Complex Regional Pain Syndrome (CRPS)?

Transcription

1 Royal Manchester Children s Hospital What is Complex Regional Pain Syndrome (CRPS)? A Guide For Parents and Patients

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3 What is Complex Regional Pain Syndrome (CRPS)? CRPS is a medical condition where severe pain is felt, usually in a limb over a long period of time. Pain may be accompanied by other changes in the affected area, such as swelling, skin and temperature changes. It is more common in girls but can affect anyone. Why am I feeling this pain? Our body normally only sends pain signals to our brains when there is something wrong e.g. if you broke your arm. Once the injury has healed, the pain signals stop. In CRPS, the pain signals continue long after any injury has healed and quite often the pain signals begin even without any injury to cause them. The pain signals are managed by the nervous system (a very complicated set of millions of nerve cells all wired up together). The nerves to the affected part of the body behave differently in CRPS which leads to severe pain. Sometimes there are changes in other types of nerves to the affected part. Changes in touch nerves can make simple touch feel painful (we call this allodynia). Changes in the nerves to blood vessels can make the limb change temperature and colour. Other nerve changes can lead to swelling in the affected part, changes in hair or nail growth, excess sweating and other problems. Such severe pain is likely to affect all areas of your life including sleeping, school work and relationships. 3

4 What causes CRPS? This isn t fully understood yet. Researchers have found definite changes in the brain and in the nerves in patients with CRPS, but why this happens to some people and not others is unclear. How do you know I have CRPS? There are no tests to look for CRPS. It is diagnosed by a doctor with experience in this area by talking to you and examining the painful limb. Is CRPS different in children than in adults? Yes. It is less often caused by an injury in children, mostly starting out of the blue. It occurs more often in the leg in children. Children with CRPS usually have a better outcome than adults. Children are much more responsive to physiotherapy (exercises) and occupational therapy alone than adults. 4

5 How do I get better? A team of people will support you and your family. They will teach you the things to do to get better and support you when you are finding it particularly hard. The road to getting better will be tough at times but only you can do the exercises and practice the techniques the team will teach you. These are the things which will make you better. Some children benefit from taking medicines to help them manage the pain whilst they practice their techniques and exercises. Who are in the team? You! You re the leader of the team, but we know that having CRPS is very hard and you re going to need some people to help and support you; Your family and friends; Pain doctors: They will assess you and make a plan for your pain management. Pain Nurse Specialists: They are a source of information and support. They will be your contact point for further information and advice. Clinical Psychologist: We know that severe pain can affect your mood and that your mood can affect the pain. Mind and body are not separate and having severe pain will affect every part of your life. The Clinical Psychologist understands this and will teach you coping strategies and problem solving skills. Physiotherapist: They will help you gradually build up your activity levels and provide you with reassurance to continue with activities even when they are painful. 5

6 Where else can I find information? Your Pain Nurse Specialist is available on If you have any questions or concerns please contact the Pain Team at the Royal Manchester Children s Hospital between 8.00 am and 4.00 pm Monday Friday. An answerphone is available outside of these hours. Please leave a message and your call will be returned as soon as possible. Alternatively you can our Pain Nurse Specialist: dorothy.duckworth@cmft.nhs.uk. If you need advice outside of these hours or at the weekends please contact your GP. Recommended reading: Complex Regional Pain Syndrome (CRPS) Explained. For Teenagers, by Teenagers. Dr G.R. Lauder & Roslyn Massey. Xlibris. ISBN: Harcover Softcover Ebook

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8 TIG 184/14 Produced January 2015 Review Date January 2017 (SF Taylor CM15440)