Fatigue is one of the most common symptoms of multiple sclerosis.
It's described as a feeling of exhaustion that's out of all proportion to any activity you may have been doing.
Managing fatigue is based around taking steps to increase your energy levels and then learning how to use that energy in the most efficient way.
MS fatigue is very different from the feeling of being tired or exhausted that people without MS may experience following heavy exercise or a busy day at work. It involves a sudden loss of energy and not being able to continue an activity. Fatigue can be either physical or mental fatigue or both at the same time.
Fatigue feels as if I am an inflatable, and someone has pulled the airstopper out! My brain goes fuzzy, I can’t think clearly, my speech slurs and my eyesight goes. Swallowing becomes more difficult, my balance gets worse and my legs feel heavy and clumsy.
Unlike the limits of normal, everyday tiredness, which may give a little when pushed against, MS fatigue can feel like a barrier. It can be difficult to recognise what your limits are until you’ve overstepped them.
Whilst recovery from everyday tiredness is relatively swift, you may find that it takes much longer to build your energy levels back up again after an episode of fatigue.
Fatigue feels like being weighed down, as if you’re trying to walk up to your neck in a deep, muddy river in heavy, wet clothes carrying shopping bags full of rocks.
As an 'invisible' symptom of MS, fatigue is sometimes not properly understood by family, friends or colleagues. Until it is experienced, it is hard to understand the impact of fatigue and how debilitating it can be. Fatigue is a major cause of stopping working or reducing working hours.
You may find that your MS symptoms get worse during an episode of fatigue but reduce again after rest. Fatigue can also affect cognitive symptoms such as problems with short term memory, concentration or word finding. Often, when you're feeling fatigued, it can seem harder to think clearly and keep your mind on the job.
Fatigue leaves me feeling dulled and tired. I find it hard to concentrate and to absorb new ideas, and I’m often confused, searching for the right word, and forgetting things.
The causes of fatigue in MS are not well understood. Fatigue is thought to result from different factors, partly caused by multiple sclerosis itself (known as primary fatigue) and partly by other factors (secondary fatigue) that affect people with MS more than those without the condition.
Primary fatigue is thought to be due to nerve messages from your brain and spinal cord having to navigate the areas of damage caused by your MS. It takes more energy to send and deliver messages to other parts of the body, like the muscles in your arms and legs, causing a build-up of fatigue.
Secondary fatigue is caused by the effect of living with MS. For instance, MS symptoms such as depression, being in pain or by having sleep disturbed by spasms or needing to go to the toilet more often can all make fatigue worse.
Fatigue may also occur as a side effect of various medications or be the result of inactivity, stress, poor diet or an infection. If you have other medical conditions, this can also cause or worsen fatigue.
Fatigue for many people is the result of a combination of several factors which can make you feel tired and lacking in energy. Once you’re aware of these factors, you can review whether they apply to you and begin making changes.
Although fatigue is one of the most common symptoms of MS, it is not clear how many people are affected. Levels reported in research vary greatly, from a little more than half of all people with MS up to almost everyone (96%).
Although fatigue can’t be cured, there are techniques that can be used to reduce the impact it has on your daily life.
There are two main aspects of managing fatigue.
Although the key person in fatigue management is you, health professionals, such as an MS nurse, occupational therapist or physiotherapist, can support you through this process and help you develop strategies to manage your fatigue.
Do reach out to them if fatigue is an issue and you need some advice and support – you don't have to manage fatigue on your own.
The sections below encourage you to address the areas in your own life that may be adding to your fatigue. By reviewing these areas of your lifestyle, you can begin to make small changes that may increase your energy levels.
Sleep is a very important part of healthy living. Whilst you’re asleep there are many complex processes going on in your body that allow you to wake up the next day feeling refreshed. Sleep helps to regulate your mood, memory and metabolism.
There’s no set rule on how much sleep you need. Most adults need six to nine hours to function at their best, although some people operate perfectly well on four or five hours.
You may not be getting good quality sleep for a variety of reasons, such as MS symptoms, concerns and worries, family responsibilities and being less active.
There are many steps you can take to improve your sleep.
If you can’t sleep, lying in bed thinking about not being able to sleep will make dozing off even less likely. Try to focus on something else and distract your mind from trying to force sleep. You could try a relaxation technique or get out of bed and do a mundane task.
Read more tips on how to improve your sleep.
Low mood can lead to reduced energy levels and vice versa. Often it’s not clear which symptom is a result of which so it can become a vicious cycle.
Sometimes when you’re feeling down it can seem difficult to see the positives in your life. This can lead to a negative spiral that you may find hard to break. Here are a few suggestions you may want to try if you’re struggling with your mood.
I remind myself frequently of all the plus points in my life, including spending time with family and friends. It’s not always easy to do this, but I do try!
If your mood is affected by living with MS, seek help and support from your GP or MS nurse. They can talk through suitable treatment options such as talking therapies or medication.
Read more about talking therapies.
Stress is a normal and unavoidable part of life. It occurs when there’s an imbalance between the demands made on you and your ability to meet those demands.
You might experience stress because of deadlines at work, family issues or if you need to adapt to new life circumstances.
Excessive stress can have negative effects on both your physical and emotional health, including a direct impact on your fatigue levels.
When it comes to managing stress, there are three main stages.
There are a variety of steps you can take to try and control your stress levels. This can include staying positive, keeping things in perspective, doing things you enjoy and planning ahead.
I try not to worry too much about the things that I can’t change. Not always possible, I know! There are usually ways around problems and I’m lucky, I have a supportive husband and really good friends.
Read more about the ways you can reduce your stress levels.
Relaxation techniques are activities that leave you with a feeling of complete peace and calm, and allow you to shut off from daily hassles and routines.
Regular relaxation can help with fatigue as it promotes good sleep patterns, increases the benefit of rest breaks during the day and can be used to reduce your stress levels.
Here are a few techniques you could try.
Read more about these relaxation techniques.
You might find that changes in temperature contribute to your fatigue. It might be triggered by the weather, hot baths or showers, hot drinks or meals, exercising or feeling feverish because of an infection.
These effects are usually reversed when you take steps to cool down and your temperature returns to normal.
I wear cooling scarves and bandanas. Marvellous! I also use an electric fan – especially when ironing.
Although less common, some people with MS find that cold temperatures can trigger their fatigue. If this is the case for you, taking steps to warm up – such as wearing additional layers – will help to increase your body temperature and should ease your fatigue.
Read more about temperature sensitivity.
Some form of physical activity as part of your daily routine is an essential element of a healthy lifestyle. Low activity levels cause under-used muscles to become weaker, which means that stamina levels and fitness are reduced. This means your body has to work harder when carrying out everyday activities, so they consume more energy and increase fatigue.
Once I worked out what was going on (less activity, leading to more fatigue, leading to less activity) I found exercising at the gym a HUGE benefit!
People sometimes think physical activity means high energy exercise, which can be off-putting. However any activity that increases your heart rate and your breathing is beneficial. This includes everyday jobs such as ironing, hoovering, climbing stairs or washing the car.
How much should I be doing?
It’s recommended that you aim to do at least two and half hours of moderate intensity activity each week. You can do this in sessions of any length.
Moderate intensity activities include a brisk walk or slow jog, aqua aerobics or mowing the lawn. You should also try to do some activities that strengthen your muscles at least twice a week, eg using resistance bands or weights, carrying heavy shopping or digging the garden.
One way to meet this guidance is to try and do 30 minutes of activity on at least five days a week. This doesn’t have to be in one chunk – you could break it down into a few 10-minute sessions spread throughout the day.
Reducing the amount of time you spend being inactive by introducing even short bouts (eg 5–10 minutes) of light physical activity will help to improve your fitness and fatigue levels. So take it slow, fit it in where you can and build up gradually.
The key message here is that even a little movement is better than nothing.
Keep exercising!
If physical activity seems like a chore, it’s easy to lose motivation and stop. To increase the likelihood of continuing with regular exercise, choose something you enjoy, enlist a friend for support, join a local class and set some personal goals.
Read about becoming more active.
Eating a healthy, balanced diet will help to give you the best energy levels. To achieve this, it’s recommended that you try to eat a variety of foods from the five main food groups.
It’s also important to drink plenty of fluids, particularly water, throughout the day. Being even mildly dehydrated can cause tiredness and sluggishness, adding to your fatigue. The recommendation is to drink six to eight glasses a day.
Eating regularly and healthily definitely improves my energy levels. Bothering with breakfast is the most difficult for me, but makes the biggest difference!
There are various ways you can save energy when preparing and cooking meals. Read more on our diet and symptoms page.
Other common medical conditions and infections can drain energy and cause your fatigue to worsen. This includes things like a cold, stomach bug or urine infection.
The onset of a relapse can also make existing MS symptoms like fatigue worse.
A GP can investigate whether there is an underlying medical cause that might be adding to your fatigue and can suggest appropriate treatment options or refer you on to other services. Your MS nurse can provide support if you’re going through a relapse.
Once the infection has cleared or you’ve recovered from the relapse, your fatigue levels should go back to their previous level.
Drugs to treat fatigue
Medication isn’t a solution to fatigue on its own and should be used in addition to the fatigue management techniques discussed on this page.
Amantadine (Symmetrel, Lysovir) is licensed to treat flu, shingles and Parkinson’s disease. However it’s sometimes used to treat fatigue in some people with MS, although research on its effectiveness is fairly mixed.
Some research suggests that amantadine can reduce fatigue in between one and two people out of five with mild to moderate MS. This is the only drug currently used to treat fatigue in MS and it’s not effective for everyone.
Modafinil (Provigil) has been used as a treatment for some people with MS fatigue. However, following a safety review, the European Medicines Agency now recommends that it should only be used for narcolepsy.
Drugs that make fatigue worse
Some medications can increase drowsiness and worsen fatigue. This applies to all types of treatments – prescription, over the counter, alternative and illegal – regardless of whether they’re being used to treat MS or not.
Of the drugs for MS symptoms, treatments for muscle spasms and stiffness and pain are often associated with an increase in fatigue.
If you're worried that medication may be impacting on your fatigue, ask your doctor or pharmacist to review your medication. They may suggest changing medication or reducing the dose.
As well as taking steps to build up your energy levels, the other key element in managing fatigue successfully is using the energy you have in the most effective way. There are a range of techniques involved.
Planning involves taking some time to stop and think about what you need to do and what you can realistically achieve. It's a very individual process that requires you to be aware of how fatigue affects you. Planning can help you think ahead and organise your time better.
I plan my day using a notebook. Often, when I feel that I haven’t had a good day or achieved all that I wanted to, I check the notebook and I’ve often done more than I thought.
If your energy levels are limited, it can be better to focus on a small number of essential tasks, rather than trying to do everything at once.
You could start by writing a list and then ordering the tasks by how important they are. Have a think about what’s absolutely essential and whether there’s anything that could wait until another day.
What you consider essential activities will be unique to you. They’ll be influenced by your lifestyle, responsibilities, interests and beliefs. Priorities often change over time, so try not to get stuck doing things one way because you’ve always done them that way.
It’s important to remember that essential activities should include things you enjoy. Household or work related tasks may seem more important, but if all your energy is taken up on these tasks then you may risk not having enough energy left for the more pleasurable things in your life. Try to make social activities a priority too!
Prioritising was such a helpful idea! My energy levels are higher in the morning so I get the ‘important’ tasks done then. If they’re not all completed, by dealing with them on a list I’m not so overwhelmed by them and I don’t get so stressed. I’m also getting better at requesting help from family and friends when necessary.
It can take time to get used to delegating tasks. You may feel uncomfortable or guilty about asking others to do jobs that you’d normally do. You might feel like you’re giving in to fatigue or losing control. You might be worried that someone else won’t do the job exactly how you like it done.
I’ve reluctantly had to pass some tasks on to others. However, my experience of asking for help is a positive one.
Sometimes people are more willing to help than you might expect. However, when delegating, remember that people have their own lives and commitments and may not be able to help when you need it.
Properly handled, delegation frees up time and energy for important activities and means that you can achieve more.
My kids help out a lot. We make supper a family job. I made a chore chart so they know who does what. It helps a lot.
Delegating tasks doesn’t just mean asking family, friends or work colleagues for help. It could also mean getting some help around the house by hiring a cleaner, gardener or dog walker.
Try to do tasks using as little energy as possible. This may involve changing how you would normally do certain daily activities.
I shop online wherever possible – stuff gets delivered straight to my door!
Pacing involves taking planned breaks or rests during or between activities. Often this requires some self discipline as it can be tempting to try to get to the end of a job without stopping. However, it can be more beneficial to take things steadily rather than continuing with an activity to the point of exhaustion and then suffering the consequences.
Doing tasks more slowly or taking regular breaks can help to stop fatigue from building up. You might find you can achieve more in a series of shorter chunks broken up with periods of rest, rather than working straight through until your fatigue becomes overpowering.
A break is different from sleep, though some people do find that a nap in the afternoon for a set period can help preserve some energy for the evening. Breaks can be a short period of relaxation or minimal activity.
I build in rest periods. When I put the potatoes on to boil, I sit down for 10 minutes and shut my eyes while they cook! Rest, rest, rest! It’s boring but it works.
