MS: Busting the Myths
Fatigue is the most common symptom of MS affecting 75-90% of people diagnosed. Fatigue is still not fully understood as to why it affects people, and how, but management strategies can help people understand how and when it impacts them and learn tactics of how to minimise the risk and effects. Fatigue affects people differently and to varying degrees. It is important to acknowledge how it impacts you and what it means to you living your life.
It can be very hard to describe fatigue, it is more than just tiredness and most people define it as overwhelming, entirely draining, persistent, affects their ability to do daily tasks and cannot be easily overcome by rest. Some common challenges for people with fatigue include problems concentrating or making decisions, absence of energy or strength, loss of sex drive, difficulty sleeping and being upset easily. Fatigue is one of the many ‘unseen’ symptoms making it difficult for other people not only to describe but also to understand.
People with MS who experience fatigue may do so because of its direct effect on the nervous system (‘primary fatigue’), or because of other factors (‘secondary fatigue’). The various factors can co-exist, requiring multiple management strategies. People with MS may also experience fatigue because of something entirely unrelated to their condition, such as an unknown infection. Thus, it is important to discuss any substantial increase in fatigue with your doctor.
Secondary fatigue is caused by the effect of living with MS. For instance, MS symptoms such as depression, being in pain or by having sleep disturbed by spasms or needing to go to the toilet more often can all make fatigue worse. Fatigue may also occur as a side effect of various medications or be the result of inactivity, stress, poor diet or an infection. If you have other medical conditions, this can also cause or worsen fatigue.
Fatigue for many people is the result of a combination of several factors. Treatment should involve trying to identify the factors that add to your fatigue and developing an approach to manage these.
Fatigue is still not fully understood but it is thought it may be due to an overactive immune system. When the immune system detects infection, such as influenza, it increases white blood cells (‘lymphocytes”) and special proteins (“cytokines”) to fight the virus. It is presumed the production of these substances is what causes the tiredness one usually associates with “having the‘’flu”. Similarly, it maybe that when the immune system attacks the nervous system (as it does in MS) it secretes the same substances, bringing on fatigue and tiredness the same way as when fighting an infection. Whatever the actual mechanism, this type of fatigue usually occurs in the early to mid-afternoon, but can improve by the evening. It mirrors the daily temperature variation of the body, which peaks in mid-afternoon – although it is not known if there is a direct link.
Primary fatigue is thought to be due to nerve messages from the brain and spinal cord having to cope with areas of damage caused by MS. It takes more energy for your body to operate and this leads to a build-up of fatigue. Fatigue is often associated with weakness in muscles, which again require more energy. Heat can increase fatigue in MS and you may find that your symptoms get worse during spells of hot weather or even after a hot shower or meal.
Usual treatment
Steroids suppress the immune system response (i.e. the secretion of attacking substances) and this may be effective in reducing fatigue as well as speeding up recovery from a relapse. However, steroids can be prescribed only sparingly for this type of treatment. Some non-MS medications may also be useful in treating this type of fatigue (e.g. amantadine and modafinil) and your neurologist or GP will be able to discuss whether they are likely to be of benefit to you.
When the body’s temperature is raised through exercise, heat, change in climate or infection, the signs and symptoms of MS can become more obvious and weakness can be increased. Even an increase of one quarter of a degree in body temperature can affect a demyelinated nerve’s ability to conduct the electrical impulses that make up nervous system messages. So, when the change in body temperature prevents the nerve fibres from sending messages through the body, this causes fatigue in the fibres themselves and contributes to limitations in activities.
Usual treatment
Minimising the amount of heat to which the body is exposed will reduce the likelihood of fatigue, so air-conditioning, cooling vests and cool showers can all help. Because exercise can increase body temperature, it may be best to consider exercising in cool environments, such as swimming and aqua jogging. The increase in body heat does not cause any further damage to myelin or to the nerves and any problems are generally temporary. Lowering the body temperature will usually alleviate the symptoms.
Infections and other health problems can contribute to fatigue. This is especially true if the infection is accompanied by fever.
Usual treatment
This type of fatigue is best dealt with by treating the underlying problem.
Many of the medications commonly used to treat MS symptoms can cause or worsen fatigue as a side-effect. Particular medications to note include interferons, steroids (especially on withdrawal from a high dose), antidepressants and medications for spasticity or pain.
Usual treatment
Because the range of medications that may aggravate fatigue is wide, it is important to talk to your GP or neurologist if you have concerns about any medication you are on. Note: Drugs that assist with sleep may cause sedation and drowsiness during waking hours, which can be confused with fatigue. If you have any concerns, talk to your GP or neurologist.
MS can cause problems with mobility and muscle control. Compensating for these disabilities requires greater energy and effort than would otherwise be necessary to perform daily tasks. When some muscles cannot perform certain tasks other muscles are used instead and the extra work can tire those muscles, leading to additional fatigue.
Usual treatment
Neurophysiotherapists and physiotherapists can demonstrate exercises to strengthen and maintain body functioning and there is a range of equipment available to help conserve energy and reduce stress on muscles and joints. Occupational therapists can suggest modifications to your home or workplace to improve your efficiency and reduce the effort involved in daily tasks. Regional MS Community Support Staff, friends, family members and other people with MS can be useful sources of practical advice on ways to reduce energy needs.
MS causes a variety of symptoms that disrupt sleep. Muscle spasms, pain, bladder problems and breathing difficulties can all affect sleeping patterns.
Usual treatment
The solution to this type of fatigue lies with identifying why the sleep is being disrupted and treating the underlying problem. Your GP or neurologist can help with this.
While depression and stress don’t technically cause fatigue, they can affect energy levels in a similar way, in part by disrupting sleep.
Usual treatment
Stress and depression are brought about when we have difficulty coping with the various challenges we face. Try to reduce the problematic aspects of life wherever possible and seek help from others. Support and information is available from GPs, counsellors and help lines. Regional MS Community Support Staff are also available for one-on-one discussions and can provide a referral to services in your community.
Poor diet and dehydration can contribute to fatigue, as the body does not have the neccesary nutrients to provide energy.
Usual treatment
Foods that combat fatigue include complex carbohydrates and foods rich in potassium, iron and vitamins B and C. You should also maintain an adequate intake of liquids. A dietician can provide specialist advice on nutritional needs. This is particularly important if you also have bowel problems.
Coping with fatigue can be draining. Thus, feelings of tiredness and exhaustion can lead to more feelings of tiredness and exhaustion. However, maintaining a healthy lifestyle can help you cope better with fatigue. Keeping physically fit is very helpful and it is possible to develop a balanced programme of activity that takes account of any limitations. A physiotherapist can help with specific exercises, but they must be aware of the potential limitations MS imposes.(Remember to monitor your body temperature in case this increases fatigue). Managing time and energy and minimising stress is also important. Whether at work, home or elsewhere, conserving energy and taking periodic breaks will make a big difference to how much can be done each day. It may be useful to plan each week’s work, social and late-night activities in advance so that the most important activities take priority. Maintaining a healthy and balanced diet is important for everyone, but especially for people with MS. Be aware that excessive alcohol can increase fatigue and toxins like nicotine should be avoided. Each day’s activities should include opportunities for relaxation (such as gentle exercise, yoga or meditation) and moments of high energy should be balanced with adequate rest periods.
It is difficult to explain fatigue to others. Because it is invisible, people can misunderstand what you are experiencing and may think you are really just depressed or lazy. It can be hard to gain support and understanding when this happens, but reassure yourself that you are doing the best you can to cope with fatigue and describe its effects to others. Ultimately, you are not responsible for what others think. In these circumstances, some people with fatigue find it too hard or too tiring to explain how it feels and instead make other excuses for their difficulties – such as being short of sleep or feeling sore. However, it can be better in the long run to take the time to explain fatigue, so that the nature of your difficulty is understood and supported. A good way of explaining what fatigue feels like is to use an example to which others can relate, such as: “I feel like I have a bad case of the ‘flu that won’t go away”; or “I feel like a person who went for a 5km run at 3am and then couldn’t get back to sleep afterwards because they were just too tired. But, then I had to come to work anyway.” It is really good when you can make people understand what fatigue feels like. They may still offer unhelpful (but well-meaning) advice, such as ‘have more rest’, or ‘take a vitamin supplement’, but you can feel supported.
While coping with ongoing fatigue can be very draining, there are good approaches available for lessening its impact on your life. These strategies apply to anyone, whether their fatigue is MS-related or not. It is important to be aware of the causes of fatigue and to avoid as many of those triggers as possible. This means staying healthy, minimising stress, maximising rest and avoiding other illnesses. Without minimising the difficulties that fatigue can bring, it can provide positive outcomes as well. Firstly, fatigue requires people to take stock of their lives and identify the real priorities. This can make life more purposeful and, thus, potentially more satisfying. Secondly, the need to slow down and rest more can provide an opportunity for contemplation and relaxation that not everyone has. Some people with MS will not be able to avoid fatigue and it can be a frustrating problem. However, a proactive and positive approach to coping with fatigue can provide you with more control and confidence.
For more information please view our MSNZ Information Series booklet: Multiple Sclerosis and Fatigue
MS Energise – This app uses cognitive behavioural therapy (CBT) principles to help users self-manage the fatigue they experience as a result of their condition.