Fatigue is one of the most common, troubling symptoms experienced by people with MS. For some people, it’s the symptom that affects them most. MS fatigue is not only difficult to describe, it’s also an invisible symptom. This can make it difficult to understand or explain to others. It’s often described as heavy tiredness, general weakness, lack of energy or total exhaustion.
Everyone experiences MS fatigue differently. Unlike ordinary fatigue, MS fatigue can occur suddenly, usually without reason, last longer and can take longer to recover from. It can be temporary, like during a relapse, an infection or unrelated illness, or as a side effect of starting a new medication. It can also be ongoing (chronic), even after rest.
MS fatigue can temporarily worsen other symptoms, like muscle weakness or vision problems, but these usually improve once you've had time to rest. MS fatigue can also be caused by other MS symptoms like walking problems, pain, muscle weakness or depression.
People can also experience cognitive fatigue, which affects memory, learning, concentration, decision-making and attention span (also known as ‘brain fog’).
What causes MS fatigue?
Fatigue in MS can have different causes. Some are primary, directly linked to the disease, while others are secondary, like poor sleep or stress.
Primary MS fatigue is from changes in the brain and damage to the central nervous system. The damage affects the nerves by interrupting messages from the brain and spinal cord to the rest of the body. Because of this, your body has to work harder to function, which can lead to fatigue. Muscle weakness and cognition are also affected by the changes in the brain, also using more energy causing fatigue.
Secondary MS fatigue occurs from the effects of living with MS. MS symptoms like depression, pain or sleep disturbance from spasms or bladder problems can all make MS fatigue worse. MS fatigue may also occur as a side effect of:
- Some medications
- Being inactive
- Poor diet
- Infection
- Other medical conditions
How is MS fatigue different from ordinary fatigue?
MS fatigue is different than everyday tiredness. It’s not just about being worn out from activity or a lack of sleep. MS fatigue goes beyond that. It can be physical and mental; it drains energy in an instant and can stop you from completing tasks.
It can happen at any time without warning or without any apparent reason. Some people say they experience MS fatigue after gentle activities like writing or reading and they need to rest right away. Others say that MS fatigue happens after physical activity, like taking the dog for a walk or grocery shopping. For others, MS fatigue can happen after cognitive exertion like working on the computer or completing tasks that require a lot of focus or thinking. You might also experience MS fatigue when you wake up, in some cases every day, even after a full night’s sleep.
MS fatigue:
- Often gets worse later in the day
- Appears more easily and suddenly than ordinary fatigue
- Generally, more severe than ordinary fatigue
- May worsen with heat and humidity
- Is more likely to interfere with daily activities than ordinary fatigue
Understanding and managing MS fatigue
It’s possible to manage, or even reduce MS fatigue to be able to maintain a healthy and active lifestyle. Managing MS fatigue involves maximizing your energy, using it efficiently, and prioritizing tasks.
It can be helpful to recognize things that cause your MS fatigue and find ways to manage or avoid them. There’s no one-size-fits-all answer to managing MS fatigue: everyone is different, so the way you manage your MS fatigue probably won’t be the same as someone else’s.
Keeping a fatigue diary can help you to understand the ways you experience MS fatigue. By looking at your fatigue diary, alongside your general health and any medications you are taking, you and your healthcare team might be able to see certain things that make your MS fatigue worse. You can also use the diary to help explain your fatigue to your loved ones.
The more detail you include in your diary, the more useful it will be. Some people make notes as they go, and others will write at different times throughout the day.
Lack of sleep may be a main cause of your fatigue, or one of several causes. There are many things that may disturb sleep:
- Muscle spasms or restless legs
- Pain
- Active bladder
- Insomnia
- Caffeine or alcohol
- Temperature
- Anxiety
- Depression
- Medication side effects.
Include sleep in your fatigue diary to help identify triggers and plans that you and your healthcare team can put in place. For example, it may be useful to follow a sleep hygiene program, or look at medication to help with spasms, depression or the need to go to the bathroom so often.
Many drugs used to manage MS, and related symptoms, have side effects that can add to MS fatigue. If it’s a new medication, or you are changing doses or changing the time of day you take the drug, your MS fatigue levels may also change. If you think your medication is having an effect on your MS fatigue, then speak to your doctor or pharmacist. They will be able to look at all the medications you are taking (including over the counter drugs) and make changes to see if it helps. It’s important not to adjust your drugs without talking to your healthcare team.
Infections, like the common cold or bladder infections, often lead to unexpected tiredness, particularly if they raise your body temperature. If you have an infection, it’s important to get it treated quickly, to rest, drink plenty of fluids and keep your temperature down.
Anxiety, depression and mood changes are not uncommon in MS, and they can cause feelings of fatigue. MS fatigue can also have an effect on mood. It can be difficult to untangle the two issues – they might be affecting each other. Speak to a member of your healthcare team because there are many options for treating mood changes.
MS can cause a variety of symptoms, but not every health issue is related to MS. Other possible causes, like menopause, anemia and thyroid issues could also be considered. All of these can cause fatigue or make it worse. Speak with your healthcare team if you’re unsure or experience symptoms that seem unrelated to MS.
Take some time to think about how MS fatigue affects you. Consider what changes you, and those around you can make. Try to find a balance of activity and relaxation, exercise and rest, work and social life. Some of the changes you make could involve family, friends or work colleagues.
Mobility devices can be a useful way of conserving energy. Even if you don’t use a device every day, when your fatigue levels are high, you might find it helpful to have the option of using a cane, walker or scooter. This can help you reduce the amount of energy needed when moving around.
Making changes to your routine isn’t always easy, but prioritizing your activities can help you save energy for what matters most. If MS fatigue means you can’t get everything done in a day, focusing on the most important tasks can make a big difference. Think through your typical day or week and identify which tasks are essential, which ones you’d rather avoid, and which can be done less often, or not at all.
Once you’ve narrowed down what’s most important, consider how to make those tasks easier to manage. Can they be done at a time when you have more energy? Can they be broken into smaller steps or spread out over several days? And don’t hesitate to ask for help, sometimes sharing the load is the best way to keep moving forward.
By using the tips in the ‘prioritizing’ section, you’ll know your priorities, and this can help you to plan your time more effectively. The idea of making a timetable for a day or week may seem a little strange or regimented at first, but planning can help you be more confident of getting things done.
Some tips can make planning easier:
- Set yourself targets, but keep them realistic.
- Try to balance your day between easier and more difficult tasks, making time to rest.
- Split a large or heavy task into smaller tasks, to be done a bit at a time.
- Share your plans with others, especially your family and friends and, if possible, your work colleagues. This may improve their understanding of how MS is affecting you and allow them to support and help you.
People might say to you, ‘If there’s anything you need...’ or ‘If there’s anything I can do...’, but it’s not always easy to ask for help, even when it’s offered. It can be useful to prepare a list of tasks that you would like help with. That way, if someone does offer to help, you can easily tell them how they could support you. Asking for help is a sign of strength, organization and a desire to get on with things. It’s not a sign of weakness.
Work out how long you think a task will take and when it needs to be done by. Don’t forget to add in time for breaks!
Physical activity can improve strength, fitness and mood and stop muscles from losing strength over time. But it’s important to balance physical activity with rest. If heat makes your MS fatigue worse, you might want to plan your exercise to avoid long sessions which can lead to overheating. Some people find water-based exercise helps maintain a steady temperature. Cooling clothing like wristbands and bandanas can also help.
Read Physical Activity and MS for more information.
Combining physical activity with a balanced diet can also help you maintain a healthy weight and get the energy you need. Both weight loss and weight gain can be issues for people with MS, making it harder to manage MS fatigue. Read Nutrition and MS for more information.
What you eat can also make a difference. Large, hot meals can make MS fatigue worse and caffeine or sugary snacks might have an initial ‘pick-me-up’ effect but may leave you feeling more tired later. Some people with bladder problems drink less to reduce their need to go to the bathroom. Although, not drinking enough water can lead to dehydration which can cause MS fatigue. You may want to avoid drinking too much close to bedtime.
While no drugs specifically target MS fatigue, certain drugs used for other conditions are sometimes prescribed. There’s limited evidence for how well they work, and what evidence there is suggests they’re less effective than the MS fatigue management tools above.
You might need to ask your employer to make some changes, like flexible hours, regular breaks, a parking space closer to the entrance, or make your work environment more accessible for you. You don’t have to tell your employer that you have MS, but if you choose to, it can help them understand your needs and offer better support.
Accommodating and Communicating about Episodic Disabilities (ACED) has several helpful tools for people including, Decision-Support for Communicating about Invisible Disabilities that are Episodic (DCIDE), a tool that helps people with decisions around sharing personal health information with others at work, and the Job Demands and Accommodation Planning Tool (JDAPT) that can help identify which parts of your job or routine are most challenging and what kinds of accommodation might help.
Helpful changes to your living and workspace don’t always have to involve specialist equipment or major changes.
- Keep items that you use regularly within reach to avoid getting up and down all the time.
- Items that are used together can be stored together. In the kitchen, for example, you might want to keep the kettle, tea and mugs together in one place.
- Keep work areas uncluttered. Make sure the lighting is good to avoid eye strain as this can increase MS fatigue.
- Consider the items you use, like pens or cutlery. Would they be easier to use if they were lighter, had larger handles, or were adapted in some way?
- Some tasks, like preparing vegetables or ironing, can be done sitting down instead of standing.
We would like to thank the Multiple Sclerosis International Federation (MSIF) for their permission to adapt this resource. The original MSIF resource Fatigue: An invisible symptom of MS can be viewed on their website.