Maintaining purposeful occupation, fatigue & MS

Just as the word “depression” is often over-used, describing any state of low mood, including temporary lows or natural melancholy, the word “fatigue” has also been over-used. However, unless you have experienced significant, enduring fatigue related to a medical condition, it is difficult to appreciate just how disabling fatigue is. Multiple Sclerosis related fatigue is one of the most debilitating symptoms of the condition, but often the least acknowledged or treated.

Multiple sclerosis (MS) is a chronic, unpredictable autoimmune disease characterised by de-myelinisation of nerve cells which results in scarring known as plaques. Common symptoms of MS include vision problems, loss of balance and muscle coordination, slurred speech, tremors, stiffness, bladder problems, cognitive deficits, and fatigue. Like many things, it is easier to provide practical solutions for physical issues related to MS but more difficult to tackle fatigue, which is complex, unpredictable and emotionally and socially embroiled. This is one of the reasons that occupational therapy is the primary profession dealing with MS fatigue.

The strategies for occupational therapists treating MS related fatigue are now well known. Finlayson, Preissner and Cho (2012) note that primary fatigue is often treated by medication but secondary fatigue is helped by a variety of modalities including cardiovascular and strengthening exercises, cognitive behavioural therapy (CBT) and energy management education. Occupational therapists often teach energy management strategies, sometimes combined with elements of CBT, with the aim of managing daily life with fatigue through behavioural change (Matuska et al 2007).

Energy conservation techniques include: changing body position for certain activities; planning the day to balance rest and work; modifying frequency or outcome standards; including rest periods in the day or at least 1 hour; adjusting priorities; simplifying activities; communicating needs for assistance; resting during longer activities; changing location of equipment/supplies; delegating part or all of an activity; eliminating part or all of an activity; identifying and changing incorrect work heights; changing the time of day of an activity; starting to use adapted equipment (Matuska et al 2007). While these strategies make complete sense, there is danger that trying to implement them could add to fatigue, as changing a lifetime of occupational habits, patterns and routines is difficult. Sometimes a sense of failure is all too easy to generate when trying to make significant life changes.

Finlayson et al (2012) reviewed the main OT treatment modalities for MS fatigue but also recognised the factors which affect the outcomes. It’s a great article which explores issues which we know: group treatment is great, but we need to acknowledge find ways of making it effective for all. This came home to me a few years back, when I was involved in a large research project which used cognitive behavioural therapy in a group format, for fatigue management in MS – the FACETS programme (Thomas et al 2013). We were one of the centres which delivered the programme, which had to be followed to the letter. This was a struggle for me as I like to respond to issues that arise and the individual needs of group members. These groups were diverse with participants from all social class groups, genders, ages, work status etc.  How people responded to the materials and activities was, as it always is in group work, variable and the benefits that people gained were variable too. The Finlayson research explains why!

However, does measuring the effectiveness of a programme mean that as occupational therapists we are helping our patients develop and sustain meaningful occupations? Not necessarily and if we are not careful we might end up making adherence to treatment guidelines an outcome for treatment, rather than quality of life.  We need to consider the “usual” advice we give people and how this might be interpreted and used to best effect, rather than become a possible barrier to occupation. For example, let’s take “pacing” which is often taught in fatigue management, which involves breaking activities into chunks interspersed with rest periods e.g. hoover for 3 minutes, rest for 10, hoover for another 3 minutes etc.  We could use pacing with any activities, not just housework, but I am concerned that passion and flow are lost are potentially lost when you pace. What if I start a painting and get so into it and want to paint for hours and that flow and engagement gives me energy. Yes, I might suffer the following day, but maybe that’s the pay-off and maybe I gain more energy from engaging fully? Perhaps that’s a psychological contract I need to make with myself?

Yes, follow the guidelines for fatigue management but as occupational therapists, we must help people figure out what matters to them and ensure they do not lose valued activities. There is often a danger that people exclude their desired activities, in an attempt to save energy on what seems to be necessary such as everyday activities like cleaning, ironing etc. Of course, for some people housework and keeping the home tidy are very important, but perhaps there is room for exploring activities which might increase energy, rather than just use it.

As occupational therapists we need to help people develop self-awareness:  who they are, what they love doing, what they need to do and who they want to be in spite of MS and related fatigue. This awareness raising includes helping people evaluate their lives and daily activities with a critical but compassion eye – an eye which is ok with imperfection and small wins.  We need to help people identify what activities act as energy drainers and which ones are energy gainers – which activities give us energy or make us feel good, versus which activities leave us tired or unfulfilled. As occupational therapists treating people with fatigue, we need to avoid being technicians and implementors of guidelines and be more like artists, who help people develop a picture of a fulfilled occupational life.

Useful articles and references

Thomas S, Thomas PW, Kersten P, et al (2013) A pragmatic parallel arm multi-centre randomised controlled trial to assess the effectiveness and cost-effectiveness of a group-based fatigue management programme (FACETS) for people with multiple sclerosis Journal of Neurology, Neurosurgery & Psychiatry 2013;84:1092-1099.

Finlayson M1, Preissner K, Cho C, Plow M (2011) Randomized trial of a teleconference-delivered fatigue management program for people with multiple sclerosis Mult Scler. 17(9):1130-40

Kathleen Matuska, Virgil Mathiowetz, Marcia Finlayson (2007) Use and Perceived Effectiveness of Energy Conservation Strategies for Managing Multiple Sclerosis Fatigue American Journal of Occupational Therapy Vol. 61, 62-69.

Marcia Finlayson; Katharine Preissner; Chi Cho (2012) Outcome Moderators of a Fatigue Management Program for People With Multiple Sclerosis American Journal of Occupational Therapy Vol. 66, 187-197