F30 Pain after stroke – referenced version A stroke can leave someone with various physical effects, such as weakness, paralysis or changes in sensation. Unfortunately some people also experience pain. This factsheet outlines some of the causes of pain after stroke, the treatments that are available. It also gives details of useful organisations that can provide further information and support. Stroke causes interruption and damage to the normal functioning of the brain, often resulting in weakness “hemiparesis” or paralysis “hemiplegia” on one side of the body (see our factsheet F26 Hemiplegia and stroke for further information). This can unfortunately lead to spasticity and other painful conditions. As with many aspects of stroke, pain may persist for some time, but physiotherapy and other treatments are successful in many instances and there are coping techniques that can be learned to help you manage with long-term pain. Spasticity and contractures after stroke Spasticity is a form of muscle tightness that can arise after stroke1. It involves increased muscle tone, tendon jerks and can interfere with normal movements2,3. It can also lead to tissue and joint damage. It happens when there is damage to the area of the brain that controls the muscles in the body. Spasticity is common, particularly in the affected arm4. Some degree of spasticity is found in almost every patient with hemiplegia and usually begins within the first © The Stroke Association September 2009 week5. Some people who have had a stroke find they develop contractures in their affected limbs (where the muscles tighten up and can’t be straightened out) 6. This can make normal mobility impossible and cause painful muscular spasms7. Early physiotherapy aims to prevent or reduce contractures and should begin as soon as possible. An assessment should be carried out after 24 hours by a team of specialists who will decide upon the best treatment methods on an individual basis8. Physiotherapy Anyone with spasticity should have physiotherapy every day to move the affected joints. The affected areas should be moved into all positions possible. The physiotherapist will assist and gently place the body part into different positions. This is called passive stretching and should be taught to the family and carers9. Splinting/Casting If stretching alone does not control contractures, splinting or casting may be used10. This involves using an aid (usually a splint or a cast) that molds to or lies along the affected limb and 1 holds it in place. The purpose of using splints is to prevent abnormal positioning of the body11,12. Medication Once the muscles start tightening, it is difficult to get them to relax again and the doctors may want to consider using drugs or botox13,14 to help reduce the pain and disability that can follow from what is termed high, or excessive, muscle tone. Some oral medicines that may be prescribed for generalized spasticity include15, 16 . Baclofen (a muscle relaxant) works on the central-nervous system17 Tizanidine ( a muscle relaxant) works on the nerves18 Gabapentin ( an anticonvulsant) acts on the brain cells and dampens down electrical activity19 Dantrolene (a muscle relaxant) works directly on the muscle20 Diazepam (an anti-anxiety) works on a chemical released by the brain called norapinephrine21. If spasticity affects only one or two specific parts of the body, injections of Botulinum Toxin (Botox) may be given directly into the muscle. The muscle relaxing effects usually last for about three months and do not interfere with nerve sensation22. © The Stroke Association September 2009 In severe cases of contractures, surgery to release tendons may be carried out23. Advances in drug treatment have reduced the need for surgical treatment (our factsheet F33 Physical Effects of Stroke provides more detail about spasticity and treatment options). Shoulder Problems These are quite common after a stroke24 and always occur on the affected side, resulting in prolonged stiffness, loss of movement and often severe pain. It is thought that several problems combine to cause the pain and that before treatment, an assessment should be carried out by specialists to determine where the problem lies. Often, a painful shoulder after stroke may be referred to as ‘frozen shoulder’, ‘capsulitis’, or ‘adhesive capsulitis’. This means that there is thickening and inflammation in the shoulder joint25. A complication of shoulder problems is ‘shoulder subluxation’. This is a partial or incomplete dislocation26 and is a warning sign that the shoulder is not supported properly by the muscles. Pain, inflammation and restricted movement can be reduced by: • Correct positioning and handling: After the stroke, good movement and positioning, including shoulder care, are 2 vital. Foam arm supports may be used if necessary but overhead arm slings should be avoided27. The affected arm initially could be placed on a pillow to provide support, as gravity alone can may damage the joint. • Mobilising the shoulder: In the first stage of treatment, passive movement can be applied by the physiotherapist to counteract the paralysis and loss of coordination arising from the stroke and keep the shoulder joint mobile28. The physiotherapist can also provide advice about how to protect the shoulder during everyday movements such as combing your hair. If the shoulder causes pain, mild painkillers such as paracetamol and/or anti-inflammatory drugs, should help to control it. Often, doctors can prescribe something stronger if necessary29. Transcutaneous electrical nerve stimulation (TeNS) This alternative to drugs for pain management is widely used by hospitals and pain clinics throughout the UK. It is best for treating localised pain including arthritis, sciatica and lumbago, but may sometimes be used for frozen shoulder. There are no side effects and it can be used alongside any other medication without fear of interference. (People fitted with a cardiac pacemaker are advised not to use TeNS unless under medical direction.) © The Stroke Association September 2009 The standard treatment time is around 40 minutes and this can provide several hours of significant or total relief from even chronic pain. Self adhesive pads (electrodes) are placed directly onto the skin around or adjacent to the area of pain. At the higher frequencies, it instigates ‘gateway control’, which prevents the pain signals from moving along the nerve pathways. The lower frequencies help the body to release natural painkillers called endorphines30. Central post-stroke pain (CPSP) Approximately 5 per cent of people who have a stroke will develop pain called central post-stroke pain (CPSP)31. This is also known as thalamic pain syndrome32, Dejerine Roussy, or central pain syndrome33. The onset of pain may occur at the time of the stroke but more often it begins several months later34. The pain is often described as an icy burning sensation, throbbing, or shooting pain in the part of the body affected by the stroke. It is a form of neuropathic pain which means that it does not have to occur as a response to the environment or damage to tissue. The precise cause of the pain is unknown. In some cases it is due to damage to the thalamus; the brain’s ‘pain centre’. Because the brain is damaged it can sometimes feel pain 3 when it should be feeling a sensation that is not painful. This is known as hypersensitivity or allodynia. In 20 per cent of people the pain gets better over a period of years35. Usual painkillers have little effect on this pain. Some medications originally developed for epilepsy and depression can have a positive effect. The most effective medicines are thought to be the tricyclic antidepressants such as amitriptyline36. Referral onto a pain management programme37, relaxation, visualisation techniques, meditation, aromatherapy, counselling and hypnotherapy may also be beneficial38. Pain Clinics and Pain Management Programmes If you develop pain after a stroke your GP may refer you to a pain clinic for a diagnosis. An assessment should be carried out to determine the cause of the pain. If you are diagnosed with CPSP you may be offered some of the treatments mentioned in this factsheet. You may also be referred to a pain management programme39. There is no cure for CPSP, but, pain management aims to help people cope better with their pain in the long term. The programmes are run by a combination of healthcare professionals, such as physiotherapists, clinical © The Stroke Association September 2009 psychologists and doctors who can help with poor posture, frustration, depression and other obstacles. People learn about pacing their actions, breathing and relaxation, positive thinking and exercise patterns. Pain management programmes strive to improve quality of life40. Swollen, painful hand Sometimes after a stroke the hand can swell up and become painful. This usually happens when the hand isn’t being moved very much (for example; if it is paralysed). The fluid normally present in the hand tissue stops circulating and collects, causing the swelling and discomfort. Gravity can also add to the problem if the hand is often hanging downwards41. To overcome this it is best to raise your hand and place it on a pillow. Using a machine to apply pressure at intervals, (once thought to be helpful), is no longer used to encourage circulation42, although a tight fitting glove (called an oedema glove) may sometimes be worn to push the fluid out of the hand. This needs to be fitted correctly to avoid causing too much pressure 43. Paracetamol can sometimes help to relieve this pain44. Headache It is quite common for people to experience headaches after a stroke caused by a bleed (haemorrhagic stroke). Less commonly, pain will be experienced a few days after a stroke caused by a blockage if there is 4 swelling of the brain45. The pain tends to lessen over time and can usually be controlled by painkillers such as paracetamol (aspirin should usually be avoided after a bleed). Drinking plenty of water (2-3 litres per day) and avoiding caffeine and alcohol can help to reduce these headaches46. If a technique called Lumbar Puncture has been performed, a headache can occur because the levels of cerebrospinal fluid (CSF) the fluid that fills the space between the brain and the skull) are lower than normal47. This should only last for a few days. Too much CSF can also cause headaches48. This is known as hydrocephalus and affects about 10 per cent of people who experience haemorrhagic stroke. This can usually be treated by placing a tube into the brain that allows the excess fluid to be drained away49. Medicines can also cause side effects that include headaches. Common examples include Nifedipine (Adalat) 50, which is given for high blood pressure, Glyceryl trinitrate51, which is given for angina and dipyridamole (Persantin) 52; an antiplatelet (blood thinner). Anyone experiencing a sudden, severe headache or a persistent headache should seek medical attention urgently to find out what is causing it. © The Stroke Association September 2009 Useful resources Pain relief audio tapes/CD’s A series of simple and effective audio cassettes for home use, describing techniques used on the Pain Management Programme at the Walton Centre for Neurology and Neurosurgery are available from the Pain Relief Foundation (see Useful organisations). Titles: Coping with Pain, Coping with Back Pain, Coping with Headache and Migraine, Anxiety (all priced at £8.50 inc. P&P), The Relaxation Kit, and, Feeling Good (£13.99 inc P&P). Books “The Pain Relief Handbook: Self-help methods for managing pain” By Dr Chris Wells & Graham Nown Vermilion, London 1996. Available from the Pain Relief Foundation, price £10.99 + £1.00 P&P or from book shops. “Taking Control of your Pain” By Toni Battison price £6.99 plus £1.95 P&P. Available from Age Concern Books, Units 5 and 6, Industrial Estate, Brecon, Powys, LD3 8LA, Tel: 0870 442 2120. “Pain Relief without Drugs” By Jan Sadler. Available from The Pain Relief Foundation price £12.99 (inc P&P). Useful organisations All organisations are UK wide unless otherwise stated 5 Action on pain PO Box 134 Shipdham Norfolk IP25 7XA Tel: 0845 6031593 Website: www.action-on-pain.co.uk Supports and campaigns for people living with pain. The British Pain Society 3rd Floor Churchill House 35 Red Lion Square London WC1R 4SG Tel: 020 7269 7840 Website: www.britishpainsociety.org Has a number of publications for patients. Central Pain Syndrome Alliance International internet resource: www.centralpain.org Chronic Pain Policy Coalition c/o Policy Connect CAN Mezzanine 32-36 Loman Street London SE1 0EH Tel: 020 7202 8580 Website: www.paincoalition.org.uk A forum uniting professionals, parliamentarians and patients to develop an improved strategy for issues surrounding chronic pain. Pain Association Scotland Cramond House Cramond Glebe Road Edinburgh EH4 6NS Tel: 0800 783 6059 Website: www.chronicpaininfo.org Support for people with chronic pain. Pain Concern PO Box 12356 Haddington East Lothian EH41 4YD Listening-ear helpline: 0844 499 4676 © The Stroke Association September 2009 Website: www.painconcern.org.uk Offers a range of publications, information and support about living with chronic pain The Pain Relief Foundation c/o Pain Research Institute Clinical Sciences Centre University Hospital Aintree Lower Lane Liverpool L9 7AL Tel: 0151 529 5820 Website: www.painrelieffoundation.org.uk PainSupport www.painsupport.co.uk A dedicated UK website offering support to people with chronic pain through a series of self-help pages, an online discussion/contacts group and newsletter. Recommends compiling a Tool Kit notebook of favourite self-help pain relief methods, which is useful when pain flares up. SCOPE 6 Market Road London N7 9PW Cerebral Palsy Helpline: 0808 800 3333 Website: www.scope.org.uk Information sheets about spasticity, splinting and botox treatment. Second Skin United Kingdom Office 60b Hermiston Village Currie Edinburgh EH14 4AQ Tel: 0131 449 9479 Email: Edinburgh@secondskin.com.au Website: www.secondskin.com.au 6 The only organisation selling Lycra Dynamic Splints – a treatment for spasticity that originated in Australia. SCOPE has promoted its acceptance by the NHS; it is currently an expensive option. Talking Life 36 Birkenhead Road Hoylake Wirral CH47 3BW Tel: 0151 632 0662 Email: wendy@talklife.u-net.com Website: www.talkinglife.co.uk Produces training courses and materials for the NHS and Public Sector. TeNS Medical Services Ltd Central House 37 Gate Lane Boldmere, Sutton Coldfield B73 5TS Tel: 0845 0900 800 Website: www.tens.co.uk Produce and sell TeNS machines.Pain forum for professionals, patients and members of the parliament. © The Stroke Association September 2009 Disclaimer: The Stroke Association provides the details of other organisations for information only. Inclusion in this factsheet does not constitute a recommendation or endorsement. Glossary of Terms Adhesive Capsulitis = limitation of movement of the shouldher joint, often causing pain Allodynia = hypersensitivity (perceived pain to a stimulus that is not painful) Contracture = abnormal shortening of a muscle that results in deformity CPSP = central post-stroke pain CSF = cerebrospinal fluid (fluid that bathes the brian and spine) Hemiparesis = weakness of one part of the body Hemiplegia = paralysis of one part of the body Hydrocephalus = build up of CFS in or around the brain Oedema = abnormal accumulation of fluid in the tissues causing swelling Spasticity = a form of muscle tightening 7 References 1 The British Medical Association. Sixth Edn. (Reprinted 2004). New Guide to Medicines & Drugs. Dorling Kindersley Limited; London. P122. 2 Venes, D et al. (2005). Taber’s Cyclopedic Medical Dictionary. F.A. Davis Company. P2032 3 Harwood, R., Huwez, F., Good, D. (2005). Stroke Care. A Practical Manual. Oxford University Press; Oxford. P172 4 Royal College of Physicians and the Clinical Effectiveness & Evaluation Unit. (2008) National Clinical Guidelines for Stroke. 3rd Edn. Lavenham Press Ltd; Suffolk. P81: 6.20. 5 Stein, J. et al. (2009). Stroke Recovery & Rehabilitation. Demos Medical. New York. P446. 6 Royal College of Physicians and the Clinical Effectiveness & Evaluation Unit. (2008) National Clinical Guidelines for Stroke. 3rd Edn. Lavenham Press Ltd; Suffolk. P78; 6.14 7 Marler, J.R. (2005). Stroke for Dummies. Wiley Publishing, Inc; Hoboken. P277 8 Royal College of Physicians and the Clinical Effectiveness & Evaluation Unit. (2008) National Clinical Guidelines for Stroke. 3rd Edn. Lavenham Press Ltd; Suffolk. P135: 4.18.1 B. 9 Pinto, A. (No Date). 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(2008) National Clinical Guidelines for Stroke. 3rd Edn. Lavenham Press Ltd; Suffolk. P77; 6.11.1 C. 43 Professor Anthony Rudd. Expert Advisory Panel. (27th July 2009). Painful, swollen hand. janine.bennett@stroke.org.uk 44 Professor Anthony Rudd. Expert Advisory Panel. (27th July 2009). Painful, swollen hand. janine.bennett@stroke.org.uk 45 Hankey, G,J. (2002). Stroke: Your Questions Answered. Harcourt Publishers Limited. Edinburgh. P58. 46 Brain and Spine Foundation. (2009). Subarachnoid Haemorrhage. http://www.brainandspine.org.uk/information/publications/brain_and_spine_booklets/subarachnoid_haemorrhage/index.html (created April 2009, accessed 17th July 2009). P21 47 Fuller, G., Manford, M. (2006). Neurology. An Illustrated Colour Text. 2nd Edn. Elsevier Limited; Edinburgh. P39. 48 Fuller, G., Manford, M. (2006). Neurology. An Illustrated Colour Text. 2nd Edn. Elsevier Limited; Edinburgh. P40. 49 Fuller, G., Manford, M. (2006). Neurology. An Illustrated Colour Text. 2nd Edn. Elsevier Limited; Edinburgh. P49. 50 The British Medical Association. Sixth Edn. (Reprinted 2004). New Guide to Medicines & Drugs. Dorling Kindersley Limited; London. P371. 51 The British Medical Association. Sixth Edn. (Reprinted 2004). New Guide to Medicines & Drugs. Dorling Kindersley Limited; London. P306. 52 The British Medical Association. Sixth Edn. (Reprinted 2004). New Guide to Medicines & Drugs. Dorling Kindersley Limited; London. P271. Additional Reading Pain Support. The Pain Gate http://www.painsupport.co.uk/relief/01paingate.html Pain Concern. A Guide to Managing Pain, Physio Footnotes 1-5. http://www.painconcern.org.uk/pages/page9.php Pain Relief Foundation. “Over-The-Counter” Medicines For Pain Relief. http://www.painrelieffoundation.org.uk/paininfo/druginfo_overthecountermedicines.html © The Stroke Association September 2009 10