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MS information for health and social care professionals Fatigue

Fatigue is the most common symptom experienced by people living with MS. In a recently conducted survey of 2265 people with MS[1], 94% experienced fatigue, with 87% reporting an impact on their activities of daily living, which was between moderate and high. Fatigue can be the predominant reason for disability, even early in the disease course and is reported to be one of the key factors most likely to precipitate early departure from work.

It can be defined as an overwhelming sense of tiredness, lack of energy and feeling of exhaustion. The severity of this fatigue is distinguished from the transient and mild fatigue that healthy adults experience. Fatigue does not correlate with age, severity of MS or mood disturbance and onset can be rapid and debilitating.

In people who have MS sleep problems are common. They can result from nocturnal or painful spasm, needing to use the toilet at night and alteration of sleep patterns through becoming less active. Recent research has suggested that sleep disturbance may be an important factor in contributing to fatigue in people with MS[2]. However there remain many people with MS who experience fatigue for whom sleep problems are not an issue.

Fatigue must be distinguished from limb weakness and from depression, though in practical terms there may be an inter-dependent relationship between depression and fatigue.

Fatigue can have a frightening effect in that 'old' symptoms can recur which will subside after rest, particularly in relation to cognitive difficulties that can be more marked when fatigue is being experienced. Similarly, it can be a worrying problem for carers who may fear that psychological problems are developing, or that inactivity is due to laziness[3].

Fatigue can be classified as primary or secondary fatigue depending on its cause[4]. This distinction is important in deciding how to approach the management of fatigue.

Types of fatigue

Primary fatigue

Primary fatigue describes aspects of fatigue that are thought to be directly related to the disease process but much of the understanding of these features remains theoretical. Shortcircuiting fatigue is sometimes known as 'nerve fibre fatigue' or 'conduction block' where performance deteriorates during continued/sustained activity but responds notably to a short rest break allowing activity to be resumed. Lassitude, sometimes referred to as asthenia, describes, "an overwhelming tiredness not directly related to participation in activity or exercise". The pathogenesis of 'lassitude' is even more poorly understood, although various immunological theories have been suggested. Heat sensitive fatigue is well recognised in multiple sclerosis and it has been long been considered a unique dimension of MS fatigue differentiating it from fatigue in other conditions.

Secondary fatigue

Secondary fatigue is not unique to MS; it relates to factors that can be generalised across a variety of chronic and disabling conditions. The relationship between these dimensions is complex; the specific influences on the overall experience of fatigue are often difficult to discern, however, the ability to isolate these contributory factors can be invaluable in the medical management of fatigue since many secondary factors below can be either avoided or treated directly[5].

  • Medications may cause tiredness or drowsiness as a side effect for example baclofen, commonly used in the treatment of spasticity. Side effects of the beta interferon disease modifying therapies have also been documented as having a negative impact on fatigue[6]. It should be noted if there is a correlation between a change in fatigue levels and a change in medication.
  • Increased effort required by the body if mobility or coordination is affected can cause fatigue.
  • Reduced activity can also lead to de-conditioning of both the cardio-vascular system and the muscles themselves, resulting in a less efficient use of energy and therefore more fatigue is experienced.
  • An infection, sleep disturbance, depression and the environment can also affect fatigue levels and it is important to identify if anything has changed to increase fatigue.

Fatigue management

Explanation and information may be the only tools necessary for people with MS to accept that some fatigue is inevitable, to help them minimise precipitating factors and manage their lifestyle to accommodate the problem.

For other people further help may be necessary and various fatigue management programmes have been developed. The treatment of MS fatigue through fatigue management and energy conservation is now well-documented[4]. This approach to managing fatigue relies on a person reflecting on their own fatigue and the way that it affects their daily life. This approach does not take the fatigue away but aims to make living with fatigue easier.

The principles are as follows:

  • Take frequent rests
    Balance activities with rests and learn to allow time to rest when planning a day's activities. Rest means doing nothing at all and take frequent short rests rather than one long one. Also some people find relaxation helpful.
  • Prioritise activities
    Try to put activities in order of priority so that those that must be done are done before you run out of energy. Decide if jobs could be done by other people, consider outside help, consider jobs that could be cut out of your daily routine or done less often eg ironing.
  • Plan ahead
    Make a daily or weekly timetable of activities that need to be done. Spread heavy and light tasks throughout the day. Set realistic targets and breakdown large complicated tasks into smaller stages that can be spread throughout the day.
  • Organise tools, materials and work area
    This involves organising the work area for example the kitchen so that tools and objects that are in continual use like tea, coffee and crockery are placed at a height between hip and shoulder and heavy objects and less used items are placed from the hip to the floor.
  • Adopt a good posture
    Activities should be carried out in a relaxed and efficient way minimising stress on the body, which will in turn save energy. Maintaining an upright and symmetrical posture during all tasks and resting on a perching stool while carrying out tasks if necessary. Avoid excessive twisting and bending.
  • Lead a healthy lifestyle
    Keep generally fit. Exercise is essential but exercise should be balanced with rests. Physiotherapists can advise on specific exercises that may be relevant and the MS Trust publications in book or DVD format give guidance on appropriate regimes. Eat a well balanced diet, further advice is available from dieticians. Avoid heavy meals or only plan a light activity afterwards.

In addition to teaching these techniques, a fatigue management programme often involves counselling, liaison with statutory services and advice regarding access to disability resources. Although limited studies related to efficacy of fatigue management programmes have been carried out, clinical guidelines support fatigue management programmes on the basis of expert consensus. An Occupational Therapist can offer education regarding both fatigue management principles as well as practical problem solving which aims to address fatigue related distress at the level of activity and participation.

At present no medicines targeted at fatigue should be used routinely although a small clinical benefit might be gained from taking amantadine (Symmetrel, Lysovir) 200mg daily[7]. Modafinil (Provigil) is a drug that promotes wakefulness and is licensed to treat people experiencing excessive sleepiness due to narcolepsy and other forms of sleep disorder. This has also been shown to be an effective treatment for the management of MS fatigue in some people[8].

References

  1. Hemmett L, Homes J, Barnes M, Russel N et al. What drives quality of life in multiple sclerosis? QJM 2004;97(10):671-676.
  2. Stanton BR, Barnes F, Silber E. Sleep and fatigue in multiple sclerosis. Mult Scler 2006;12((4):481-486.
  3. Stuifbergen AK, Rogers S. The experience of fatigue and strategies of self-care among people with multiple sclerosis. Appl Nurs Research 1997;10(1):2-10.
  4. Multiple Sclerosis Council for Clinical Practice Guidelines. Fatigue and Multiple Sclerosis. Washington DC:Paralysed Veterans of America: 1998.
  5. Kesselring J, Thompson A. Spasticity, Ataxia and Fatigue in Multiple Sclerosis. Balliere's Clinical Neurology 1997;6(3): 429-445.
  6. Simone IL, Ceccarelli A, Tortorella C et al. Influences of interferon beta treatment on quality of life in multiple sclerosis patients. Health Qual Life Outcomes 4:96.
  7. National Institute for Clinical Excellence. Multiple sclerosis - Management of multiple sclerosis in primary and secondary care. NICE Clinical Guideline 8. London: NICE;2003.
  8. 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. J Neuro, Neurosurg Psych 2002;72(2):179-183.

Bibliography

  • Betts L. Exercises for people living with MS. Letchworth Garden City: MS Trust ; 2004.
  • Ennis M, MS Trust. Living with Fatigue: fatigue management for people with MS. Letchworth Garden City: MS Trust;2006.
  • Harrison S. Fatigue management for people with multiple sclerosis. 2nd edition. London: College of Occupational Therapists; 2007.
  • Hubsky EP, Sears JH. Fatigue in multiple sclerosis: guidelines for nursing care. Rehabil Nurs 1992;17(4):176-180.
  • Krupp LB. Fatigue in multiple sclerosis. Int MS J 1996;3(1):9-17.
  • Krupp LB, Polline DA. Mechanisms and management of fatigue in progressive neurological disorders. Curr Opin Neurol 1996;9:456-460.
  • Multiple Sclerosis Council for Clinical Practice Guidelines. Fatigue and multiple sclerosis, evidence based management strategies for fatigue in multiple sclerosis. 1998.
  • MS Trust. Move it for MS. [DVD] Letchworth Garden City: MS Trust;2007.
  • UKMSSNA. Fatigue Management Programme in multiple sclerosis: An evidence-based multidisciplinary approach to managing fatigue with people who have MS. London;UKMSSNA:2004.
  • Welham L. Occupational therapy for fatigue in multiple sclerosis. Br J Occup Ther 1995;58(12):507-509.