By Susan Forwell, Senior Instructor, Division of Occupational Therapy, and Research Associate, MS Clinic, Division of Neurology, University of British Columbia, Vancouver, Canada.

Fatigue and multiple sclerosis

Although fatigue is recognized to be the most common problem for those with MS and researchers are increasing their efforts to understand this invisible symptom, there remains the challenge of reducing the impact of fatigue for each person in their everyday life.

Fatigue can affect all kinds of everyday activities, such as seeking and maintaining employment, going grocery shopping, watching your child’s soccer game, going out for dinner, taking a shower or bath, vacuuming your home, going for a walk, planning and making dinner, working at a computer, and doing the laundry.

Research has shown that fatigue can affect adversely activities that are important and meaningful not only to the person with MS, but also to their friends, family and social network.

People with MS report that when they are fatigued they ‘can’t do fun things – only the necessities’ and that ‘it [fatigue] destroys spontaneous choice’. They also say ‘my memory gives up’, ‘I’m feeling guilty about it [fatigue] because I look lazy’, and ‘people don’t believe that I can’t do something’. These testimonials demonstrate that fatigue affects psychological, cognitive, social, and physical aspects of life for persons with MS.

Managing non-MS related

To manage effectively and make a difference in everyday life, the potential causes of fatigue must be assessed rigorously and identified.

There is the type of fatigue that is directly related to MS and is thought to occur because of the damage the disease causes to the protective sheath around the nerve fibres (the myelin sheath). However, people with MS can suffer from fatigue that stems from other factors that are not related directly to this damage.

Table 1 provides a list of causes of non MS-related fatigue that may be present in those with MS. Experiencing fatigue as a result of one or more of these causes is very common among people with MS.

Managing MS related fatigue

Fatigue directly related to MS is categorized into primary MS fatigue, which is thought to be nerve fibre fatigue, and secondary MS fatigue, which can occur with the onset of disability.

Currently pharmaceutical agents and non-invasive strategies are used to treat MS-related fatigue. Occupational therapists recommend the following eight non-invasive techniques for managing fatigue and enabling people with MS to do the things they want: education about the characteristics of MS-related fatigue, self-monitoring techniques, energy efficiency and work simplification strategies, use of equipment, monitoring core body temperature, relaxation routine, sleep routine, and attending to the physical environment.

The goal of these strategies is not to correct the underlying mechanism of fatigue. Rather, the focus is to provide tangible strategies for proactive decision-making, tailored to individual needs and energy patterns to enable participation in activities. In Table 2 there are some examples and principles of each of these strategies.

Research has shown that if people with chronic illnesses such as MS take part in a community-based, occupational therapy energy conservation programme, there is a positive effect on their ability to manage fatigue and improve their quality of life.

Based on the principles and examples outlined in Table 2, let’s return to three everyday life activities (maintaining employment, watching your child’s soccer game, planning and making dinner) noted at the beginning of this article. How might these strategies be implemented to reduce the fatigue and still enable you to participate in these important activities?

Notwithstanding the need to include individual assessment for specific needs, examples of strategies for maintaining employment in the face of MS-related fatigue might be to consider a work assessment by an occupational therapist to ensure your work environment is ergonomically-friendly, the temperature is moderate (air-conditioning or other cooling strategy), and rest breaks can be incorporated into the workday.

To ease attendance at a child’s soccer game, use prescribed walking aids to help cope with walking distances and uneven terrain, avoid sitting in the sun, use a cooling garment, and sit to watch the game. The final example, planning and preparing dinner, is a task that could be segmented to conserve energy as an initial fatigue management strategy. Prepare dishes in advance that can be used for a couple of meals. Rest before preparing the meal and get the family involved so as to turn it into a social time and reduce the burden on you. Whatever the approach, it must be understood that daily lives are increasingly more demanding. Coupled with the complexity of fatigue in MS, one must expect that a comprehensive, multi-strategy approach will be required in order to make an impact on managing your fatigue in your everyday life in the 21st century.

Table 1: Potential causes of non-MS related fatigue