Fatigue is one of the most common symptoms of multiple sclerosis (MS) and is reported to affect three out of four people with MS at some point during their lives (1).
It is a symptom that can have a major impact on all aspects of life, affecting both physical and mental states, and in turn the ability to perform daily duties. The impact of fatigue can also lead to social isolation, which was highlighted within MS-UK’s Loneliness and Isolation Report (2).
For some people with MS, fatigue is the symptom that affects them the most.
In an MS-UK survey, when asked whether they experienced fatigue, 80 per cent of respondents answered yes, 17 per cent answered sometimes and three per cent answered no. Of the respondents affected by fatigue, 97 per cent stated that it impacts them daily or at least on multiple days per week.
Fatigue may be the first symptom of MS, or a symptom that starts much later after diagnosis. Its impact can vary greatly from person to person and there are many different triggers.
In this booklet we will look at the many aspects of fatigue and its relationship with MS, including potential triggers and the methods which can be used to lessen its impact.
Fatigue in MS is a symptom that people find difficult to explain, given its invisibility. It isn’t like the general feeling of being tired, rather an overwhelming sense of exhaustion, and can arrive without warning but subside just as fast.
For people with MS, fatigue can often worsen existing symptoms or bring on new ones. Some people find that fatigue can make their limbs feel heavy and make it more difficult to grip objects. Important functions such as concentration, vision and speech can temporarily worsen.
MS-related fatigue can have as severe an impact on quality of life as the visible symptoms of the condition.
Fatigue in MS may be caused by many factors. To aid understanding it is important to be aware of the two distinct types of MS-related fatigue – primary and secondary (3).
Primary fatigue is believed to be due to MS itself and is caused by demyelination in the central nervous system. The consequential slowing of messages from the brain and spinal cord and a build up of muscle weakness combined can be a cause of primary fatigue.
Secondary fatigue is not directly caused by MS, but by the body trying to compensate for other symptoms caused by the condition. For example, sleep disturbances can be common due to spasms, pain or bladder problems. Factors such as side effects from medications, stress, depression and other symptoms can all cause secondary fatigue.
The reasons behind fatigue can be multifaceted and they can vary from person to person. When you know what these things are for you, the symptom can be easier to manage. Some of the most common triggers can be a hot day, humid weather, a hot bath, over-exertion, over-tiredness, a heavy meal, smoking and stress.
It is important to find out the best way of managing fatigue for you. To do this you need to understand it and identify the triggers.
As previously mentioned, it may be caused by another symptom, or a number of symptoms, which could be treatable. For example, if bladder problems at night are disturbing your sleep, then make an appointment to see your GP, MS nurse or continence advisor. The problems can be assessed and appropriate treatment applied.
The National Institute for Care Excellence (NICE) guidelines for the management of MS in the UK suggests that a holistic approach should be applied by medical professionals when trying to identify the root causes of fatigue in people with MS. It states that it should not be assumed that MS alone is the cause of fatigue and that other factors such as medication side effects, sleep problems, infections and mental health should be considered as potential triggers (4).
MS nurses and MS specialist occupational therapists can help in your fatigue management. Some NHS trusts run their own fatigue management courses that will teach you strategies to help reduce and deal with day-to-day activities. It is possible that many of these courses will be underpinned by an approach known as FACETS (Fatigue: Applying Cognitive behavioural and Energy effectiveness Techniques to lifeStyle) which was developed by clinical experts based at Bournemouth University in collaboration with the Dorset MS team based at Poole hospital.
As per its name, FACETS uses cognitive behavioural therapy (CBT) and energy effectiveness techniques which, when used together, have shown positive results in fatigue management for people affected by MS (5).
Speak to your MS nurse or GP to find out what is available in your local area.
Activity pacing is thought to help manage fatigue by making changes to activity patterns that are inefficient. This strategy is designed to help people experiencing fatigue to work within their body’s physical and mental limits and be more efficient with energy expenditure (6).
One method of pacing that is widely used is known as spoon theory. It works by each person starting the day with a set number of spoons. These signify your energy levels for the day. During the day the tasks that you undertake use either a single spoon, or multiple spoons, depending upon the perceived level of effort required for each. Once you run out of spoons, this signifies that you should wait until the next day when your number of spoons replenish, before conducting further tasks.
By learning how to conserve your energy for times when you need it most, you can start implementing this into your daily life. It could be useful to keep a diary which records all of the activities you have completed on a daily basis. Think about what you have eaten, the time of day you might have felt more tired and anything else that could possibly be a trigger. By taking all of these factors into consideration, you may be able to identify the triggers of your fatigue.
It is very important to listen to your body. If you need to rest, then rest. If you know you have a busy day coming up, a day out, a wedding or something that is going to take a lot of energy, make sure you rest well for a couple of days leading up to it.
Don’t be tempted to overdo it when you have a good day. You may well end up making yourself feel a lot worse for a few days after. It is important to pace yourself and rest when you can.
There are certain aids available to help you with activity pacing, if required. These include pacing apps which have been developed to help people manage chronic fatigue, and fatigue diaries.
It is common knowledge that eating a healthy, balanced diet helps to maintain good general health. This ideally should include plenty of fruit, vegetables and not too much fat, salt or sugar (7).
What we consume can have a significant impact on the potential for fatigue to take hold. A poor diet, lacking in essential nutrients, can lead to an increase in fatigue as the body is not being fuelled effectively. So, it is important to try and stick to a regular, healthy, balanced diet, to help combat this.
A recent review of studies that looked at the relationship between diet and fatigue in people with MS concluded that dietary interventions do help to reduce fatigue and increase quality of life. The authors suggested that based on current evidence, people with MS may be able to reduce the impact of fatigue by following a gut-friendly dietary regime, assessing the need for vitamin D and omega-3 fatty acids and identifying any food intolerances (8).
Similarly, a study consisting of just under 2,500 people with MS found that a range of modifiable lifestyle factors including diet, exercise, alcohol intake and drug treatment played a significant role in the onset of fatigue. The study concluded that participants were less likely to be impacted by fatigue if they exercised regularly, moderated alcohol use and improved their diets, with fish consumption, vitamin D and flaxseed oil supplementation being identifiable factors (9).
http://www.nhs.uk/conditions/food-intoleranceAs mentioned, fatigue and lack of energy may also be a symptom of food sensitivity (10). You may wish to consider a food intolerance test to rule out any foods that may be contributing to your fatigue. It may also be worth speaking to your GP about having a blood test to check certain nutrient levels in your system, ones which, when depleted, can cause fatigue, such as vitamin D, vitamin B12 and iron.
Additionally, there is evidence that certain supplements can help people manage the impact of MS-induced fatigue. For example, coenzyme Q10 (CoQ10) is an antioxidant that is produced by our bodies but diminishes as we age. It is involved in producing adenosine triphosphate (ATP), which is the cell’s main energy source and produces protein. Also, evening primrose oil (EPO) contains high levels of the omega 6 essential fatty acid gamma-linolenic acid. EPO is a common supplement and has had associations with improving some MS symptoms, including fatigue (11).
Dehydration can also play a part in the onset of fatigue. Try to drink plenty of water, squash, diluted fruit juice, and teas which are naturally caffeine free. Aim for between six to eight glasses of fluids per day (12).
More information Our ‘Diet and Supplements’ Choices booklet provides further reading on the link between diet and MS, including more information about gut health and the specific diets that have been developed and used by people with MS, with positive results.
www.ms-uk.org/choices-diet-and-supplements-content
It may seem counter-intuitive for some, however, taking part in regular exercise can play an integral role in fatigue management.
NICE guidelines states that exercise should be one of the key non-pharmacological methods used to address the impact of fatigue. This includes aerobic, balance, resistance and stretching exercises, such as yoga, and supervised exercise programmes.
These guidelines suggest that people with MS should be encouraged to exercise long after the end of their treatment programmes to continue reaping benefits (4).
A recent analysis of a number of completed controlled trials underpins the benefits of regular exercise in managing MS-related fatigue. The authors found that combined exercise, which in loose terms is where various parts of the body are targeted by different types of movement, and resistance training, proved particularly effective (13).
While exercise is good for managing the impact of fatigue, it is advisable not to exercise to the point of exhaustion. Take a breather before you reach the point of feeling excessively tired or hot. Listen to what your body is telling you, and the ways in which it tells you that you are crossing that line. This may include feeling dizzy or lightheaded, chest pains and musculoskeletal discomfort. It is also recommended to speak to your GP prior to starting any new exercise regime.
More information Our ‘Exercise’ Choices booklet offers more information on how keeping active can help you manage the impact of MS.
www.ms-uk.org/multiple-sclerosis-exercise-choices-booklet
Our online activities portal offers access to inclusive exercise classes specifically designed for people affected by MS.
www.ms-uk.org/multiple-sclerosis-exercise-classes
Mindfulness is a meditative approach connecting the mind and the body. It is about paying attention to the moment and being aware of thoughts and feelings so they do not become overwhelming, in turn reducing related stress and anxiety (14).
Just over 80 per cent of respondents to our survey stated that emotional stress and anxiety led to them feeling fatigued. So, it makes sense that methods such as mindfulness are considered for those who feel their fatigue is triggered in this way.
NICE guidelines underpin this, as they suggest that mindfulness can play a part in fatigue management for people with MS, particularly in cases where it is stress induced (4).
There is a growing body of evidence which shows that practicing mindfulness can be beneficial to people affected by MS, particularly with regard to managing anxiety, stress and low mood. It has also been shown to help people with MS improve sleep quality, including managing the impact of insomnia (15). All of these are factors that can spark the onset of fatigue.
One particular study found that people with MS reported improvements in emotional balance and brain processing speed after receiving just four weeks of mindfulness training (16).
You can access four and eight week-long mindfulness courses via our online activities portal. Interestingly, MS-UK’s recently published Impact Report showed that 60 per cent of people who had attended these courses found it helped them to manage fatigue. Over 80 per cent of respondents stated that it had a positive effect in managing the impact of stress and anxiety, which can also play an integral part in fatigue management (17).
More information Find out more about MS-UK’s online mindfulness courses. www.ms-uk.org/mindfulness-courses
A common problem with MS is you can become very sensitive to heat, particularly humid heat. This affects up to 80 per cent of people with the condition. Hot, humid summers can therefore be very uncomfortable for someone with MS and can exacerbate symptoms in the process. One of the most reported effects of heat intolerance in people with MS is fatigue (18).
It follows that for most people with MS, keeping as cool as possible is an important part of everyday life. The good news is that there are many ways in which this can be done.
Air conditioning can be very helpful but if that isn’t available a fan, or multiple fans, in rooms which get particularly warm is a reasonable alternative.
Items such as cooling scarves, ties and vests can be helpful too. Cooling scarves and ties are simply materials with cooling properties which you position around your neck, with the impact being a full-body cooling sensation. Cooling vests are an effective and practical option to help keep your core body temperature down, particularly whilst exercising. The technology used for scarves, ties and vests can differ. For example, some come with replaceable cooling inserts that need to be frozen, while others may contain polymer crystals which, when soaked in water, cools the body through evaporation.
Planning ahead can also help you to stay as cool as possible. For example, you may need to give a little more thought to where you choose to go on holiday. It may be better to go on holiday off-season when it is not too hot or go to places where the temperature is more agreeable. If you do visit places that are hot and humid, ensure your accommodation provides ways of keeping cool, such as air conditioning, outdoor shaded areas and access to pools.
Furthermore, whether at home or on holiday, plan any outdoor activities to take place at the times of day when the temperature is cooler.
A hot bath can sometimes bring on MS symptoms very rapidly, as well as leaving you feeling weak. These symptoms tend to go away once the effects of the hot bath have worn off and your body temperature has returned to normal. A cool bath or shower may be a wiser alternative, particularly during warmer months.
More information You can read more about the different methods which can be used to keep cool via our blog MS heat sensitivity – how to keep cool
NICE guidance suggests that certain pharmacological interventions may be considered to help people with MS manage the impact of fatigue. This could be in isolation or as part of a holistic fatigue management approach.
It is worth noting that while NICE refer to a number of drugs which can be used to treat MS related fatigue, their use for this purpose would be classed as ‘off label’. This is when a drug is used to treat a condition outside of its authorised purpose, however there is sufficient evidence to underpin its efficacy for a condition it is not formally approved to treat. As such only a clinical MS specialist should decide whether drug treatments are an appropriate option for you in these instances (4).
The following is a summary of the drug therapies which NICE currently state may be considered to help manage MS-related fatigue.
This antiviral medication is a dopamine agonist which is also used to treat Parkinson’s disease and flu-related infections. The effectiveness of amantadine in dealing with MS-related fatigue was a chance discovery. It came about when a number of people with MS were being treated with amantadine for flu symptoms and it was found that their fatigue levels improved.
A recent systematic review which looked into the efficacy of amantadine for treating fatigue in people with MS found strong evidence of its effectiveness. The review states that various studies have found amantadine to provide relief for people with MS who are affected by fatigue, with results favourable when compared to alternative pharmacological approaches (19).
Amantadine is taken orally with NICE guidance suggesting a staggered approach to dosage when used for MS-related fatigue, increasing gradually where necessary from 100 mg per day to a maximum of 400mg per day if required (20).
This is a drug that is more commonly used to treat people affected by narcolepsy. It is classed as a wakeful promoting agent and works by changing substances in the brain that control wakefulness and sleep (21).
In their evidence review, NICE suggest that modafinil would best suit people with MS who were affected by fatigue and related excessive sleepiness. Their guidance also warns that modafinil should not be prescribed to people who are either pregnant or planning pregnancy (4). It was also noted that caution should be applied when prescribing this drug to those with cardiovascular issues, and as such these patients should be monitored. Initially with a baseline electrocardiogram being undertaken at outset and then subsequent regular cardiovascular monitoring.
Over the past decade studies have reported varying results regarding the efficacy of modafinil in treating MS-related fatigue. One study worth noting is known as COMBO-MS which took place between 2018 and 2022 at the University of Michigan in the United States (22). Over 300 people with MS took part in this study and participants were split into three groups. One group’s participants received eight weekly sessions of telephone-based CBT, the second group a 12 week-long course of modafinil with the participants of the third group receiving both.
Throughout the study participants were monitored using the Modified Fatigue Impact Scale (MFIS) which allowed for effective measurement of the impact of each approach. The results were presented at the 2023 Americas Committee for Treatment and Research in MS (ACTRIMS) forum. It was reported that almost 60 per cent of participants in each group reported an improvement in fatigue, with those who were assigned to the combination group of CBT and modafinil showing the greatest improvements. The authors also reported that modafinil was generally well tolerated.
These are a group of drugs that are licenced in the UK to treat depression, sometimes in combination with a talking therapy, for instance CBT (23). The NICE evidence review suggests that SSRIs may help treat MS-related fatigue, particularly as a short-term measure (4).
Serotonin is a neurotransmitter which acts as a hormone. It plays an important role in our body’s wellbeing, sending signals between the nerve cells and the brain. Its influence on our body is vast and varied, from playing a part in our emotions, mood and sleep quality to bowel function, blood clotting and sexual desire.
SSRIs are thought to work by allowing more serotonin to pass messages between nerve cells. It does this by preventing what is known as ‘reuptake’, which is when nerve cells absorb serotonin once a message has been carried between them and the brain. This allows the serotonin to move on to more nerve cells, thus enhancing its effectiveness (23).
While SSRIs may help with an overall sense of wellbeing and resultant improvement in fatigue for people with MS, some commonly associated side effects can be insomnia or conversely, drowsiness. That said, it is reported that these drugs are generally well tolerated (23). It is worth noting, however, that further clinical evidence of the impact of SRRIs for treating MS-related fatigue is needed to aid understanding of their efficacy.
Earlier in this booklet we focused on how mindfulness can be so impactful in managing fatigue in people with MS. Mindfulness is considered a complementary therapy, which in basic terms is treatment that is not regarded as conventional.
Many people with MS use complementary therapies to help manage the impact of the condition and provide an overall sense of wellbeing. These are used in isolation by some or complementary to conventional treatments, including disease-modifying therapies.
There is evidence, both scientific and anecdotal, which suggests a number of complementary therapies can help with fatigue management. These include acupuncture, action potential stimulation (APS), massage, osteopathy, oxygen therapy and Pilates (24).
More information Our ‘Complementary and other therapies’ Choices booklet offers more information about the different therapies that may help you to manage the impact of fatigue.
www.ms-uk.org/choices-complementary-and-other-therapies-content
We asked the MS community to share their 10 top tips for managing fatigue. They are…
Be Mindful Be Mindful is part of the Mental Health Foundation. www.bemindful.co.uk
MS-UK Choices booklets Exercise, MS Therapy Centres, Vitamin D, Diet and supplements, Complementary and other therapies
