Fatigue, or extreme tiredness, is one of the most problematic symptoms of multiple sclerosis (MS). Up to 80% of people with MS report it as a serious symptom that has a major negative impact on their quality of life.
With MS, low energy and extreme tiredness might slow you down, so it’s a good idea to prepare yourself for that. You should also know that you can take steps to manage your energy, make the most of it, and lessen fatigue.
Here’s what you should know about MS and fatigue.
What Is MS fatigue?
People with MS often feel an overpowering lack of physical or mental energy. This keeps them from doing the necessary tasks of daily life and any other activities they may want to do for enjoyment.
This is different from the normal tiredness or lack of energy that anyone else may feel from time to time. In people with MS, fatigue can be an ongoing problem that highly gets in the way of daily life.
How is MS fatigue different from just being tired?
“MS fatigue can come on suddenly, feel much more intense than the activity you’ve done, and doesn’t fully improve with rest,” says Augusto Miravalle, MD, Chief of the Neuro Immunology and Multiple Sclerosis Division at Rush Medical Group in Chicago.
It isn’t logical like regular exhaustion.
“Regular fatigue is predictable: You don’t sleep; you’re more tired the next day,” says Lauren Tardo, MD, a neurologist who specializes in MS at UT Southwestern Medical Center in Dallas. “MS fatigue is the opposite. For many patients, it’s ever present despite good sleep, caffeine, etc. It can hit even after small household tasks. Many patients wake up from a full night of sleep and are tired and feel as if they didn’t go to bed.”
What are the symptoms of MS fatigue?
Here are some of the symptoms of MS fatigue that might set it apart from the routine dips in energy that other people may feel.
MS fatigue:
- Comes on easily and suddenly, sometimes after very little physical activity
- Is usually more severe than normal tiredness
- Interferes with normal responsibilities more than normal fatigue would
- Needs more recovery time than normal fatigue
- Lasts longer than normal fatigue
- Typically happens every day
- Can come on first thing in the morning, even after a full night’s sleep
- Usually gets worse as the day goes on
- Can make your limbs feel heavy or weak
- Gets worse in heat and humidity
- Gets worse with infections or stress
- Can cause brain fog, making it hard to do mental tasks, not just physical ones
MS fatigue has primary and secondary causes. That is, factors related to the disease itself can sap your energy and leave you feeling weak. On top of that, daily habits and other aspects of your lifestyle can trigger fatigue or make it worse.
How does MS itself cause fatigue?
MS damages and destroys myelin, a protective insulation that wraps around some nerve cells. In normal, healthy nerve cells, myelin plays a key role in the communication between the cells. It helps the nerve cell transmit signals to other cells.
Without myelin, the nerve cells likely have to work harder to transmit signals to one another, which can take a lot of your energy.
What makes MS fatigue worse?
You didn’t do anything to cause your MS fatigue. That comes with the diagnosis, but some of the symptoms and other conditions that can go hand in hand with MS can make you feel even more drained.
MS symptoms may make you tired
Some common MS symptoms, Miravalle says, such as “sleep disturbances, depression, bladder problems, spasticity, and pain, can all interrupt sleep and drain energy. Addressing these underlying issues is a key part of managing fatigue and improving quality of life.”
MS can cause a loss of physical strength, too. “This can make it harder to do simple tasks and worsen fatigue,” Tardo says.
MS meds may cause drowsiness
Some of your medications can make you feel sleepy as a side effect. These meds include:
- Antispasmodics, including cyclobenzaprine, and benzodiazepines for muscle spasms
- Pain medications
- Antianxiety medications
- Disease-modifying therapies that interact with or suppress the immune system to slow the progress and lessen the severity of MS
If you think your medications might be draining your energy, talk to your doctor. A dose change or medication swap might do the trick.
Lifestyle and the environment make matters worse
Certain aspects of your lifestyle and the world around you can trigger or worsen that dragging feeling.
Common triggers of MS fatigue include:
- Heat and humidity
- Stress
- Infection
- Poor diet
- Lack of physical activity
MS and Quality of Life
Lack of energy alone — separate from other symptoms such as pain or poor sleep — can have a big impact on your overall quality of life. You can imagine how it can affect your ability to do things you need and want to in your daily life, such as your ability to work and to have a social life. Not participating in these parts of regular life can leave you feeling low and even depressed, which can interrupt sleep and drain your energy even more. It’s a vicious cycle.
A 2021 study in the journal Multiple Sclerosis and Related Disorders that tracked 3,369 people with MS for up to seven years confirmed that people with MS-related fatigue had worse depression, anxiety, social participation, and overall lower quality of life. The constant exhaustion even affected their ability to walk.
Fatigue, according to a study in BMC Neurology, has a negative impact on employment status and ability to work. It’s a top reason people with MS take sick leave, too.
How fatigue progresses over time
The fatigue that comes with MS doesn’t seem to be related to how severe the disease is. Your extreme tiredness from MS can be disabling on its own even if you don’t have other physical disabilities caused by MS. The severity of fatigue doesn’t necessarily progress at the same speed alongside the severity of your disease.
Your energy levels can fall hugely early in your time with MS, before other symptoms become as serious. You may feel more tired on some days than others, but overall, you might notice that fatigue worsens over time.
But none of this means you have no control over your energy stores. Some medications may help, but most of all, lifestyle changes and energy management strategies can help you function better.
Medications for MS Fatigue
For people with MS fatigue that doesn’t get better with lifestyle changes, doctors might offer medications.
“It’s important to recognize that the medications we use are off label,” Tardo says. That is, they weren’t designed to treat MS fatigue nor are they FDA-approved for that purpose. They are drugs used to treat other conditions that have shown to have some good effect on people with MS fatigue.
These are typically stimulants, such as the kinds given to people who have too much sleepiness due to narcolepsy, sleep apnea, or shift work disorder. But they are not a cure-all by any means.
“Responses vary from patient to patient, and it’s hard to predict who will both benefit and tolerate these medications. We often trial them and adjust as we go,” Tardo says.
Stimulants used to treat MS fatigue include:
- Amantadine
- Armodafinil
- Methylphenidate
- Modafinil
Not only are the medications not guaranteed to help, but they can also come with unpleasant side effects.
“High-quality randomized data from the TRIUMPHANT-MS trial found that amantadine, modafanil, and methylphenidate were not superior to placebo, and they caused more side effects, such as anxiety, palpitations, and insomnia,” Miravalle says. “Armodafinil has a similar mechanism to modafinil and similar cautions.”
For these reasons, doctors may recommend lifestyle changes, nondrug therapies, energy management ways, and treatment of other fatigue-causing problems, such as insomnia and depression, first before prescribing medicine for fatigue.
Lifestyle Changes for MS Fatigue
You can create a lifestyle that boosts energy and helps beat fatigue. “Lifestyle interventions are at the core of effective fatigue management in MS,” Miravalle says. Lifestyle strategies should include exercise, a healthy diet, good sleep, and stress management.
Exercise
It may seem counterintuitive when just a little bit of physical activity can sometimes wear you out completely, but “regular exercise has been shown to be the most effective intervention to target fatigue.”
People with MS should aim for the same amount of exercise that federal guidelines recommend for all adults: 150 minutes a week of moderate-intensity aerobic activity plus a few sessions of strength or resistance training every week.
“Just as important, exercise should start at a manageable level, progress gradually, and be paired with cooling strategies to prevent overheating,” Miravalle says.
Healthy diet
There is no known best diet for MS, but research is being done to see if one eating plan might be better than another. For example, a small study in the journal Multiple Sclerosis that included just 39 people with MS showed that a low-fat diet may lessen fatigue. A couple of studies comparing a low-fat diet to the paleolithic diet have found that both boost energy in people with MS.
It wouldn’t hurt to try one of these diets to see if it would help you. But you may see improvements simply from eating a generally healthy diet. An overall healthy diet is important to keep energy levels up. That means choosing nutritious foods over empty calories.
Follow these tips for making healthy choices:
- Try to eat fruits and vegetables in a variety of colors every day.
- Go for lean proteins, such as skinless poultry and fish like salmon, tuna, and cod.
- Eat healthy fats, such as nuts, avocados, and olive oil.
- Opt for whole grains (such as brown rice and whole wheat bread) over refined ones (such as white rice and white bread).
- Avoid pre-packaged snacks, processed foods, and added sugar as much as possible.
“I generally tell my patients to cut one thing at a time, to see how it impacts their fatigue and other symptoms, rather than jumping straight into super restrictive diet modifications, which can be hard to follow long-term,” Tardo says.
Sleep
“Sleep is another pillar of fatigue management,” Miravalle says. “Limiting late caffeine or alcohol and addressing issues like sleep apnea, pain, or spasticity can significantly improve fatigue.”
If you’re having trouble sleeping, talk to your doctor to see if you can pinpoint the cause. You might need treatment for pain or for another condition (such as sleep apnea) that’s keeping you up.
Stress management
Stress can worsen fatigue directly. It can also disrupt sleep, which can add to fatigue. That’s why it’s important to have a good outlet for stress.
Here are just a few known ways to manage it:
- Exercise regularly.
- Eat a healthy diet.
- Get plenty of sleep.
- Socialize enough.
- Try to meditate.
- Practice yoga, deep breathing exercises, or relaxation techniques.
- Set boundaries, and know when to say “no.”
- Keep a journal where you unload feelings and fears.
- Create art or make time for another hobby you enjoy.
- Get counseling if your stress is too much to manage on your own.
Energy-Conservation Strategies for MS Fatigue
While a healthy lifestyle can help boost energy, you still may not have the reserves that other people do. But you can learn to conserve your energy and work with what you have.
The three Ps
“Practice the three ‘Ps,’” Miravalle says. “Plan, pace, prioritize.”
Plan ahead so you can save your energy for a big event or responsibility that you know is coming up. Or simply plan your day around the times you know your energy is highest. Pace yourself by breaking tasks into chunks or alternating between heavy and light tasks. Prioritize so that if you can’t do it all, you know which task or event you’re going to take off your plate.
Use adaptive aids
Reachers, rolling chairs, and wheeled carts can all help you save energy around your home and office.
Give up shopping
Only shop in stores when you must. Whenever possible, order online for delivery or curbside pickup to save all those steps walking up and down the aisles of a grocery store or through the corridors of a mall.
Make your space efficient
Organize your home and workspace so you can take fewer steps and avoid reaching high or bending down.
You could, for example, keep cleaning supplies in multiple places in your home so you don’t have to walk them back and forth to the cabinet under the kitchen sink every time. You can also leave a pair of reading glasses in every room so you’re never searching the whole house to find them.
Hang and store your most-used items within easy reach so you don’t have to reach, climb, or squat to get to them.
Use remote controls as much as possible for appliances and electronics.
Work from home
Ask your employer if you can work from home some or all of the time. You might be eligible to work from home as a protection provided by the Americans with Disabilities Act.
Stay cool
Use fans, ice packs, breathable clothing, and any other cooling aids you find helpful to keep yourself from overheating.
Nondrug Therapies for MS Fatigue
Besides your own lifestyle changes, structured therapy may also help you.
“In my opinion, nondrug therapies should be considered first-line in the management of MS related fatigue, as they are often more impactful and sustainable than medications,” Miravalle says.
People with MS fatigue may benefit from:
- Occupational therapy to show you more efficient ways to complete daily tasks by using less energy
- Physical therapy to help build physical strength so you don’t tire out as easily
- Speech therapy to improve cognitive symptoms such as brain fog
- Cognitive behavioral therapy to help you live better with your energy levels
Some health care providers also offer a formal MS fatigue program or an MS rehabilitation program, where you’ll learn and practice energy-conserving ways specific to your needs.
A Final Word on Fatigue
You can take all kinds of steps to lessen fatigue and increase your energy, but don’t forget to be kind to yourself. It’s ok to take a break, and it’s OK to say “no.”
Make sure those around know when you need a break, too.
“While it’s one of the most common symptoms, fatigue is invisible to those not living it,” Tardo says. “So often it’s mistaken as depression or lack of effort, which is so wrong. It’s helpful when those around you have insight into what you are feeling.”
