Fatigue after stroke: so common, yet so little understood

Guest blog by Dr Shamim Quadir, Research Communications Manager at the Stroke Association

For many reasons, we can all experience the normal type of fatigue that will usually resolve with rest. It could be due to a bad night’s sleep, or simply overexertion. In contrast, stroke survivors with post-stroke fatigue have symptoms that do not always improve with rest and are not necessarily related to recent activity. They can feel like they lack energy or strength, feel constantly weary or tired. Consequently, they can feel that they are not in control of their recovery.

Post-stroke fatigue is one of the most common symptoms after stroke. There are about 152,000 strokes every year in the UK,  and it is estimated that about one in four stroke survivors experience extreme fatigue after their stroke. A further one in three experience moderate levels of fatigue.

There is also no specific treatment or medication for post-stroke fatigue. Previous research into the condition has provided conflicting results and means our understanding is still limited. Offering a precise diagnosis is complex. For example, post-stroke fatigue may coincide with post-stroke depression, yet it is feasible that one of these may trigger, or escalate, the other.

To help shed much needed light, the Stroke Association is currently funding the Nottingham Fatigue After Stroke (NotFast) study. Led by the University of Nottingham, and in collaboration with a number of additional universities in the UK, the study examines fatigue solely in stroke patients who do not have depression.

The aim is to identify key factors associated with post-stroke fatigue (other than depression) in order to better inform future management of the condition. The cause of post-stroke fatigue is likely to be multi-faceted, with an interplay of organic, psychological and emotional factors contributing to what a stroke survivor experiences. This is why it is different for each person.

In addition to NotFast, we are also funding research that aims to improve our understanding of the neurological mechanisms that may underpin post-stroke fatigue. Dr Anna Kuppuswamy is a Stroke Association Postdoctoral Fellow at the Sobell Department of Motor Neuroscience and Movement Disorders, University College London. Her work aims to pinpoint what parts of the nervous system are involved in the symptoms of fatigue experienced by stroke survivors. To date, her published work suggests that brain areas involved in the production of movement are impaired in those with high levels of post-stroke fatigue (who do not have additional moderate to high levels of depression or anxiety).

Her work also suggests that fatigue may be related to altered control of movement, rather than affecting a person’s decision making and planning of movement.

Although the research is in its early stages, these findings are first steps towards a better insight into how post-stroke fatigue relates to brain function. This could provide the understanding we need in order to develop effective treatments.

Not only is our understanding of what causes post-stroke fatigue poor, public awareness of the condition is also desperately lacking, despite its well-documented prevalence among stroke survivors. As part of our recent Work and stroke campaign, we surveyed 500 owners and managers in small and medium-sized businesses across the UK, and asked them about their understanding of stroke and their attitudes to employing stroke survivors. Although many of the employers had some awareness of the outward physical and language problems after stroke, they knew little about the hidden effects. In fact, just 1% were aware that fatigue is an effect of stroke. To help address this worrying lack of knowledge, we’ve published a guide to help employers understand the emotional and physical impact of stroke.

In summary, post-stroke fatigue must be given the increased investigation and wider public awareness it urgently needs. Diagnosis and treatment of this condition desperately requires improvement for the thousands of stroke survivors that struggle to cope with fatigue day-to-day. Together we can do better to achieve these goals. Together we can conquer stroke.

For Action on Stroke Month 2015, the Stroke Association focussed on working-age stroke.