Spasticity triggers What to do if you have a worsening of your muscle stiffness and/or spasms Jane Lough Paula Cowan
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Muscle stiffness and/or spasm are common symptoms experienced by people with multiple sclerosis. These symptoms can worsen significantly as a result of other influences such as an infection or other changes to your routine. These are called trigger factors (also known as aggravating factors). Identifying what is triggering these symptoms is usually straightforward, though sometimes it can be difficult to pinpoint what is responsible. This booklet has been developed to help identify potential trigger factors and to provide a guide to manage these situations effectively. 3
? Why is it important to know about trigger factors? Stiffness and spasms can be dramatically worsened by trigger factors. If the trigger factor is managed appropriately then your symptoms of stiffness and spasm may ease without needing any medication. If the trigger factor is not managed appropriately then this can lead to worsening of your symptoms, unnecessary medication changes or secondary problems such as muscles becoming tighter and shortened. This can be very distressing and can result in worsening of your mobility.? How do I identify what my trigger factor is? We have included a list of trigger factors. Where you identify a change in your normal function or routine, tick the relevant box. There is space at the bottom of each section where you can record anything you think might be helpful, either for your own information or to discuss with the relevant health professional. If you have difficulty identifying your trigger factor then you may find it helpful to fill in the stiffness and spasm diary on page 13. TIP 4 Extra copies of the trigger list and diary can be downloaded from the MS Trust website at www.mstrust.org.uk/trigger-diary
TRIGGER FACTOR LIST Bladder problems 1 Urinary tract infections A urinary tract infection is one of the most common causes of worsening of spasms/stiffness and may require antibiotic treatment. Going to the toilet more often than normal, pain on passing urine or an unpleasant smell from your urine may indicate that you have a urinary tract infection. Take a sample of urine to your GP practice for testing. If you have a catheter and notice any change in colour or smell from your urine, take a sample of urine to your GP for testing. If your catheter is causing pain or is blocking then contact your district nurse. NOTE People with MS who have a urine infection may not have any of the above signs but if your stiffness/ spasms has worsened it is always worthwhile taking a urine sample to your GP practice for testing. 2 Bladder not emptying Going to the toilet to pass urine but needing to go back again shortly after, or difficulty starting a flow of urine may mean that your bladder isn t emptying properly. This can irritate your bladder and make you more at risk of infection. You need to be referred to a continence specialist nurse for further assessment - your GP can refer you. 5
3 Other renal/bladder problems Recurrent urinary infection or pain in the lower abdomen may require further investigation. You need to see your GP for further assessment. 6
Bowel problems 1 Constipation It is very important that your bowels move regularly and freely. A change in your normal bowel routine is one of the most common causes of worsening of spasms or stiffness. If you have more difficulty moving your bowels, or are moving them less often than normal, or your stools are hard and difficult to pass, this can indicate that you are constipated. Contact your GP for further guidance. 2 Impacted bowel Constipation with episodes of diarrhoea may indicate that you are extremely constipated and have a full bowel, known as an impacted bowel. This may need urgent attention and you should see your GP for further management. 3 Other bowel problems Any other bowel problem such as loose stools or irritable bowel syndrome can also impact on your stiffness and spasms. Your GP can help with appropriate treatment. 7
Skin problems 1 Skin irritation Anything rubbing on your skin can cause irritation, redness or blistering. Common causes include tight clothing, friction from new footwear or rubbing from a leg splint or urinary catheter. Skin irritation may also occur as a side effect of medication. It is important that the cause of the irritation is dealt with or you may risk developing an infection or skin breakdown, which can be serious. If you are unable to manage this problem yourself, then see your GP for further advice. 2 Breakdown of skin Excessive pressure on the skin affects your circulation and leads to skin damage and breakdown. This can occur if you have difficulty moving and changing position. It is a good idea to check your skin on a daily basis for any signs of damage. Skin damage and breakdown is a very serious problem and needs immediate medical attention from your GP. They can refer you to a tissue viability nurse or you may receive treatment from your district nurse or practice nurse. Advice on appropriate positioning will be essential and can be provided by your local physiotherapist or occupational therapist. Your GP will be able to refer you. Loss of weight increases the risk of skin problems. If weight is an issue, your GP can refer you to a dietician. 8
3 Burns Any burn to your skin can cause a worsening of your stiffness or spasms. It is important that any burns are properly dealt with or you may risk developing an infection, which can be serious. See your GP who may organise treatment from your district nurse or practice nurse. 9
Infection 1 Infections Any infection will aggravate your stiffness and spasms until the infection has settled. Common types of infection are urinary tract infections, chest infections, infections in the mouth or teeth and common illnesses such as a cold, flu or tummy bug. If you suspect you have persisting symptoms due to infection you should see your GP or dentist for appropriate treatment. 2 Flu vaccination Some people can experience a worsening of their symptoms after the flu vaccination. This is generally a short-term effect and symptoms will settle down in time. If you are concerned then you should see your GP for further advice. 10
Pain and discomfort 1 Discomfort when lying or sitting If you have difficulty changing your position when lying and sitting you may experience discomfort. This may mean that you have too much pressure on certain parts of your body. If this is causing worsening of your symptoms then contact your local physiotherapist or occupational therapist for further advice. 2 New or unexplained pain This should be checked by your GP. They can prescribe appropriate pain medication and refer you for further investigation if required. If you have nerve pain, your GP may refer you to your MS nurse or neurologist for further advice regarding appropriate pain medication. 3 Muscle or joint pain If you have a new joint or muscle pain contact your local physiotherapy service or ask your GP to refer you 11
Other possible trigger factors 1 Excessive fatigue If your body is overtired then this can temporarily worsen your symptoms. This may be due to physical tiredness, mental exhaustion or difficulty sleeping. Your symptoms will generally ease as your energy levels improve, but you may benefit from advice from your local physiotherapist or occupational therapist to help you pace your activities and manage your fatigue. 2 Extremes of temperature Being too hot or too cold can cause your stiffness and spasms to temporarily worsen. Try to keep your temperature as constant as you can. The spasms and stiffness will ease once you become more comfortable. 3 Emotional issues If you are feeling stressed or anxious about something, then your symptoms may worsen. Sometimes being aware of your feelings helps but you may benefit from speaking to someone about your issues. Your GP can refer you for counselling if required. 12
STIFFNESS AND SPASMS DIARY Using a stiffness/spasms diary for a week can help you identify what causes your symptoms to worsen.? How do I fill in the diary? The day is divided into 6 sections - on awakening, morning, lunchtime, afternoon, evening and bedtime. Use this scale to note how troubled you are by your stiffness/spasms - there is a box in each section for you to write down your score. 1 = not at all troubled 2 = a little troubled 3 = moderately troubled 4 = extremely troubled If you are troubled by stiffness and spasms, write down in the space provided what you were doing at the time, how you were feeling or anything you think might be relevant - this will help you identify what triggered your symptoms. As much information as possible will help. At the end of the week review the diary to see if you can identify a pattern.? What do I do once I ve completed my diary? Read the list of trigger factors and take appropriate action or take the actions suggested in the booklet. If you are still unable to identify what is aggravating your symptoms, contact your MS nurse or physiotherapist for further advice. 13
Monday Note how troubled you are by your stiffness/spasms There is a box in each section for you to write down your score On Awakening: Morning: Lunchtime: Afternoon: Evening: Bedtime: 14
Tuesday Note how troubled you are by your stiffness/spasms There is a box in each section for you to write down your score On Awakening: Morning: Lunchtime: Afternoon: Evening: Bedtime: 15
Wednesday Note how troubled you are by your stiffness/spasms There is a box in each section for you to write down your score On Awakening: Morning: Lunchtime: Afternoon: Evening: Bedtime: 16
Thursday Note how troubled you are by your stiffness/spasms There is a box in each section for you to write down your score On Awakening: Morning: Lunchtime: Afternoon: Evening: Bedtime: 17
Friday Note how troubled you are by your stiffness/spasms There is a box in each section for you to write down your score On Awakening: Morning: Lunchtime: Afternoon: Evening: Bedtime: 18
Saturday Note how troubled you are by your stiffness/spasms There is a box in each section for you to write down your score On Awakening: Morning: Lunchtime: Afternoon: Evening: Bedtime: 19
Sunday Note how troubled you are by your stiffness/spasms There is a box in each section for you to write down your score On Awakening: Morning: Lunchtime: Afternoon: Evening: Bedtime: 20
Notes Extra copies of the diary can be downloaded from the MS Trust website at www.mstrust.org.uk/trigger-diary 21
The authors Jane Lough Formerly MS Specialist Physiotherapist at Southern General Hospital, Glasgow Paula Cowan MS Specialist Physiotherapist, NHS Lanarkshire With thanks to Dr Rachel Thomas, Consultant Neurologist, Southern General Hospital, Glasgow Please contact the MS Trust information team if you would like any further information about the reference sources used in the production of this publication. Jane Lough, Paula Cowan Spasticity triggers 1-904156-26-6 2015 Multiple Sclerosis Trust reprint This publication will be reviewed in three years Registered charity no. 1088353 22 All rights reserved. No part of this book may be produced, stored in a retrieval system or transmitted in any form by any means, electronic, electrostatic, magnetic tape, mechanical, photocopying, recording or otherwise without written permission of the publisher.
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