Fatigue - factsheet
Date of issue: updated December 2007
Contents
Types of fatigue
Fatigue is one of the commonest symptoms of MS and can often have a major impact on people's lives. The level of fatigue does not reflect the severity of someone's MS and people can experience fatigue that interrupts their daily life or that prevents them from working, whilst having no other symptoms.
Fatigue is very different from the tiredness or exhaustion that people without MS experience following strenuous exercise or a busy day at work. Fatigue is described as interfering with normal activity and being out of all proportion to any activity undertaken. It is characterised by the sudden loss of energy and the inability to continue an activity. MS fatigue can not be worked through, as can sometimes be done with non MS fatigue, and recovery time also tends to be much longer.
Fatigue does not relate to relapses, nor to any permanent increase in disability. Previously experienced MS symptoms may recur during fatigue but subside after rest.
As an 'invisible' symptom of MS, fatigue is sometimes misinterpreted by family, friends or colleagues, who assume that the person with MS is depressed or just not trying hard enough. Fatigue is a major cause of early departure from the workforce[1].
Primary and secondary fatigue
Fatigue can be classified as primary or secondary fatigue depending on its cause. This distinction is important in deciding how to approach the management of fatigue.
Primary fatigue is fatigue caused directly by MS. The cause of fatigue in MS is not well understood. It is thought to be a combination of slowed nerve messages from the brain and spinal cord and a build up of weakness in the muscles due to lack of stimulation.
Heat can increase fatigue in MS and some people with MS find that symptoms get worse during spells of hot weather.
Secondary fatigue is caused by the effect of living with MS rather than by the MS itself. For instance, fatigue can be worsened by other MS symptoms, such as depression, being in pain, poor diet or by having sleep disturbed by bladder problems or spasms. Fatigue may also occur as a side effect of various medications, eg antihistamines, or be the result of inactivity, stress or an infection.
Sleep disorders are known to occur in people with MS and have been proposed as factors that contribute to MS related fatigue. Although the relationship remains unclear, some recent research suggests insomnia in the middle of the night is directly related to daytime fatigue[2]. Many people find it difficult to distinguish between fatigue and sleepiness; for example in one study of 309 patients with MS experiencing symptomatic fatigue, 43% reported excessive sleepiness as a contributing factor and 90% described their fatigue as tiredness or the need to rest.[3]
Fatigue can also be caused or worsened by other medical conditions and it is therefore important to have a comprehensive evaluation that can help identify the factors contributing to fatigue and develop an approach suited to the individual.
Treatment and management
Treatment is primarily based on helping someone find ways of managing their life to prevent or lessen the impact of fatigue. Strategies include avoiding the build up of fatigue and conserving energy. In some cases drug therapy may also be appropriate.
Understanding fatigue
The individual's own awareness of the symptom and the activities or the level of activity that can trigger it is important in the management of fatigue. By knowing what might make fatigue worse, the daily routine can be adapted to minimise the impact by conserving energy, prioritising activities and focussing energy onto what is important to the individual.
The following are comments from people with MS included in the MS Trust book Tips For Living With MS[4]
- Get to know your limitations and work out a regime that suits you
- Prioritise tasks into those that are essential and those that can wait
- Divide one major task into two more manageable jobs
- Save your energy for what you can do rather than struggling with tasks you find difficult – delegate these to other people!
- Listen to your body. Rest when you need to and learn to adapt to life at a slower pace. It can be helpful to divide the day into three parts: be active in two of them and rest well in the third
- Don't be tempted to overdo it if you are having a good spell – you might pay the price in a day or two!
- If you have a big event coming up, prepare for it by getting as much rest as possible beforehand
Some occupational therapists or MS specialist nurses offer fatigue management courses that teach these and similar strategies to reduce the impact of fatigue. Research has shown that such strategies continue to be valuable if put into practice.[4,5]
Heat management
Some people find that heat makes fatigue worse, and that taking steps to avoid becoming overheated can help. This can range from installing air conditioning to maintain an appropriate temperature at home or at work, to drinking iced water or taking cool baths or showers. Some people use cooling vests or ties containing a cooling agent.
Stress and relaxation
As stress can make MS symptoms worse, relaxation techniques can help prevent the build up of fatigue. These techniques could include reflexology, massage, meditation, aromatherapy or yoga.
Physiotherapy
Physiotherapists can assess a person's level of mobility and work with them to maintain movement. If mobility is limited, physiotherapists are able to advise on ways of standing or transferring with least effort. Regular aerobic exercise has been shown to improve fitness and fatigue[7]. Aerobic exercises are activities such as walking or swimming that raise the heart rate rather than strengthening muscles. Physiotherapists are able to help the person with MS develop appropriate activities to achieve this.
Occupational therapy
Occupational therapists (OTs) are often able to advise on energy saving ways to cope with the activities of daily life. They can help both through planning the way that tasks can be more easily handled and by providing access to adaptations and gadgets that can help make life easier, such as grab rails next to steps, or perching stools in the kitchen.
Medications
The treatment of fatigue with drugs is seen as additional to the management techniques mentioned above. Medication should not be prescribed until there has been a full evaluation of the underlying causes of the symptom, if possible by a multidisciplinary MS team or an MS nurse. Two of the most commonly used drugs are:
Amantadine
Studies have shown that amantadine reduced fatigue in 20-40% of people with mild to moderate MS[8]. It is licensed in the UK under the trade names Symmetrel and Lysovir.
How is amantadine given?
Amantadine is taken orally as tablets.
Side effects and contraindications
Amantadine is generally well tolerated with mild side effects, which can include constipation, nausea, anxiety and hyperactivity. It is suggested that the dose is taken no later than 2pm to avoid the potential problem of insomnia or vivid dreams if the drug is taken too close to the individual's normal bedtime.
Modafinil
Modafinil promotes wakefulness and has previously been used in treating people experiencing excessive sleepiness due to narcolepsy, shift work sleep disorder and other forms of sleep disruption. Research shows that it is an effective treatment for the management of MS fatigue in some people[9]. Modafinil is licensed in the UK under the trade name Provigil.
How is modafinil given?
Modafinil is taken orally as tablets.
Side effects and contraindications
Modafinil is generally well tolerated with mild side effects, which can include headache, nausea and asthenia (weakness, loss of strength). In rare cases, modafinil can cause life-threatening rashes, and it should also be used with caution for anyone with a history of mental illness as it may cause a flare up of those symptoms.
Other
There have been no trials of vitamin B12 injections as a treatment for fatigue, although there is anecdotal evidence of some effect for some people. It is not clear if this is a placebo reaction.
A trial comparing amantadine and another drug called pemoline (Cylert) and an inactive placebo found that there was no significant difference between the group taking pemoline and the placebo group[7]. The side effects of pemoline can include anorexia, irritability, and insomnia.
References
- National MS Society (USA). Multiple Sclerosis Information Sourcebook.
- Stanton BR, Barnes F, Silber E.
Sleep and fatigue in multiple sclerosis.
Multiple Sclerosis 2006;12(4):481-486.
abstract - Freal JE, Kraft GH, Coryell JK.
Symptomatic fatigue in multiple sclerosis.
Archives of Physical Medicine and Rehabilitation 1984;65(3):135-138.
abstract - Tips for living with MS
Letchworth: MS Trust; 2002.
Read, order or download Tips for living with MS - Ward N, Winters S.
Results of a fatigue management programme in multiple sclerosis.
British Journal of Nursing 2003 ;12(18):1075-1080.
abstract - Mathiowetz VG, Finlayson ML, Matuska KM, et al.
Randomised controlled trial of an energy conservation course for persons with multiple sclerosis.
Multiple Sclerosis 2005;11(5):592-601.
abstract - Petajan JH, White AT.
Recommendations for physical activity in patients with multiple sclerosis.
Sports Medicine 1999;27(3):179-191.
abstract - Krupp LB, Coyle PK, Doscher C, et al.
Fatigue therapy in multiple sclerosis: results of a double-blind, randomized, parallel trial of amantadine, pemoline, and placebo.
Neurology 1995;45(11):1956-1961.
abstract - Rammohan KW, Rosenberg JH, Lynn DJ, et al.
Efficacy and safety of modafinil (Provigil) for the treatment of fatigue in multiple sclerosis: a two centre phase 2 study.
Journal of Neurology, Neurosurgery and Psychiatry 2002;72(2):179-183.
abstract
Other sources
- Burgess M.
Multiple sclerosis: theory and practice for nurses.
London: Whurr Publishers; 2002. - Hawkins CB, Wolinsky JS
Principles of treatment in multiple sclerosis.
Oxford: Butterworth-Heinemann; 2000. - Polman CH, Thompson AJ, Murray TJ, Bowling AC, Noseworthy JH.
Multiple sclerosis: the guide to treatment and management. 6th ed.
New York: Demos Medical Publishing; 2006.
If you have specific questions about any aspect of MS, email the MS Trust Information Service or ring us on 01462 476700.
