Almost everyone who lives with multiple sclerosis (MS) will experience fatigue. In fact, according to the National Multiple Sclerosis Society (NMSS), around 80% of people with MS will experience fatigue at some point during the course of the disease. Fatigue is also one of the most challenging invisible symptoms of MS. It can be difficult to explain and different to other people’s experience with ordinary fatigue.
Managing fatigue involves maximising and using energy efficiently, by pacing yourself and prioritising tasks. With the right information and support, fatigue can be minimised or managed effectively to maintain a healthy and active lifestyle.
Fatigue in MS is a feeling of constant exhaustion, tiredness or weakness, and can be physical, mental or a combination of both. It is distinct from and more debilitating than general feelings of sleepiness or physical tiredness. Unlike ordinary fatigue, MS-related fatigue usually occurs more rapidly, lasts longer and takes longer to recover from. It has often been suggested that the term “MS fatigue” is a poor descriptor of the condition, as it fails to capture the full spectrum of the experience for people with MS. Research suggests that the type of activity (or inactivity) undertaken by a person with MS does not necessarily reflect the type of fatigue impairment experienced. That is, on some days, it’s not caused by “overdoing it” or working too hard, it happens regardless of the amount of activity undertaken.
Early in the twentieth century, myelin damage and inflammation in the central nervous system (brain, optic nerves and spine) was identified as diagnostic of MS, together with an “inexplicable transitory daily tiredness”, which remained unnamed. By the mid-twentieth century, fatigue emerged as the clinical term to describe the tiredness observed in and described by people with MS. By the late twentieth century, the first fatigue measurement scales were developed, primarily as research tools to follow the progress of fatigue symptoms in clinical studies and trials, but relying only on the subjective responses of the person with MS. Currently, there’s still no objective measure to assess fatigue in MS, which makes it difficult to assess and understand, and therefore difficult to treat and manage.
MS fatigue may be temporary such as during a relapse, an infection or unrelated illness, during periods of stress or when starting some medications to treat MS or MS-related symptoms. In other cases, MS-related fatigue can be chronic and ongoing, despite adequate rest. Additionally, other MS symptoms (such as muscle weakness, vision issues, pain and brain fog) may be exacerbated during times of severe fatigue. For some people, other symptoms such as depression and anxiety can also seem to worsen MS-related fatigue.
The causes of MS-related fatigue are not well understood. It’s thought to result from different factors, partly caused by MS itself (known as primary fatigue) and partly by other factors (secondary fatigue) that affect people with MS.
It’s believed that primary fatigue is due to interrupted nerve messages from the brain and spinal cord, damaged by MS. As a result, your body needs more energy to function which leads to a build-up of fatigue. Fatigue is often associated with muscle weakness, which also requires more energy. Heat can also be a factor, with fatigue often increasing during hot weather, after a hot shower or meal or after exercise.
Secondary fatigue occurs from the effects of living with MS. For instance, MS symptoms such as depression, pain, spasms or incontinence can all make fatigue worse. Fatigue may also occur as a side effect of some medications or from inactivity, stress, poor diet or an infection. Other medical conditions can also cause or worsen fatigue.
If you have fatigue concerns talk to your neurologist, MS Nurse or GP. A thorough evaluation can help to identify the contributing factors and to develop a management approach, to suit your circumstances. Like MS itself, MS fatigue varies from person to person, so an individual approach is best.
It can be useful to learn to recognise the early signs of fatigue and how it affects you. Likewise, talking with family, friends and/or colleagues may help them understand any limitations. Identifying any contributing factors to your MS fatigue, can help you develop a tailored management plan with your healthcare professional. Recent research is strongly supporting the role of exercise (both cardio and resistance training) in managing fatigue. Even though it may seem counterproductive to exercise when feeling so tired, it can be a very effective management tool for many, and of course has other benefits towards health and wellbeing.
Fatigue management strategies include:
Find ways to conserve your energy. Is there an easier way to do something? Can the job be broken down into smaller tasks? Can you sit rather than stand to do an activity? Review work and home spaces – can they be modified? How and where things are stored, work area heights, furnishing and lighting can all influence the amount of energy required to complete tasks.
Occupational therapists, physiotherapists and MS Nurses can help with ways to conserve your energy – at home or work – and may be able to suggest assistive devices and other practical tools to suit your individual needs.
Certain medications may help some people manage fatigue, especially if used in conjunction with fatigue management strategies, or you may need to review your current treatment program. Some drugs (for your MS or other conditions) can make fatigue worse. Of the drugs for MS symptoms, those for spasms, stiffness and pain are often associated with an increase in fatigue. Speak with your healthcare team about tailored options to improve your individual situation.
There is support available to help you manage your MS.
Your neurologist, MS Nurse or GP should be the first contact for any new and/or persistent fatigue concerns, so they can perform a detailed assessment and tailor a management plan or referrals if needed.
Contact your state or territory MS organisation to access services such as MS nurses, peer support and other resources.
The following support services may be able to provide lifestyle, wellbeing, or other advice: