Many people diagnosed with multiple sclerosis (MS) experience fatigue. It is one of the most common symptoms of MS, affecting up to 90 percent of all people with the diagnosis.
For at least half of people with MS, fatigue is the symptom that causes the most problems in daily life. MS fatigue goes beyond tiredness. It can make normal physical activity feel impossible, drastically impacting a person’s ability to complete their daily tasks and participate in activities they enjoy.
It’s possible to continue doing many of the things that are most important to you, even with fatigue. One of the best ways to support your quality of life is to learn how to conserve your energy.
MyMSTeam members frequently share the impact fatigue has on their daily lives. One member wrote, “I feel so weak by the afternoon every day. I always feel like I need to lie down. I'm trying to get enough sleep and to walk 30 minutes a day, but it just seems to be getting worse.” Another member said, “Fatigue is a daily battle for me. I push through with more coffee, and somehow I drag myself through the day!”
MS-related fatigue often feels like complete and utter exhaustion. As one MyMSTeam member described their fatigue, “You know when you tried to stay up till 5 a.m. when you were a kid? It’s like that, but without an excuse.” This member went on to describe the other effects of fatigue, adding, “With me, the muscle and mental fatigue is there 99.9 percent of the time. Everyone may be different, though.”
Fatigue can affect your ability to hold down a job and can even put strain on personal relationships. As one MyMSTeam member asked, “Does anyone else have a partner/spouse who resents you and is really angry because he/she has to do more?”
People diagnosed with multiple sclerosis can experience a cycle of fatigue. Exhaustion, pain, and other MS symptoms can lead to depression. Depression can lead to even lower levels of physical activity. Not being active often brings on spasticity in those diagnosed with multiple sclerosis, which can make it hard to sleep.
The end result is that fatigue leads to even more fatigue. It’s important to recognize when you or a loved one are in this cycle and take steps to interrupt it. While this can feel like an overwhelming task, seeing a specialist or taking a few simple steps on your own can help improve your energy levels.
One method of conserving energy with MS fatigue is occupational therapy.
Occupational therapists help people adjust their activities and make everyday tasks easier. They do this in many different ways, based on an individual’s abilities.
Occupational therapy can help you modify things like your work environment and the way you shop for groceries. This is done with the goal of expending less energy on each individual task. An occupational therapist may help you identify the items you use the most at work and arrange them to be easily accessible, so you don’t have to spend extra energy looking for them. They may help you to combine steps and conserve energy while preparing meals.
Working with an occupational therapy professional will help save energy throughout your day so you can better manage fatigue. While you may not feel more energetic than you did before, conserving your energy on individual tasks can add up. Over time, you may feel that you have more energy stored up to do the things you love.
Conserving energy means looking at your whole life. You’ll evaluate how, when, and where you do things, as well as optimizing what you do, so you spend less energy on each task.
Before you can address your fatigue, you need to understand it. Gain insight into your fatigue by logging your day. Record what you do, when you do it, and how long it takes, as well as how fatigued you feel afterward. If you are too tired to do this for yourself, ask a friend or family member to help you log your activities as you complete them.
As you review your activity log, ask yourself if certain days are more fatiguing than others, or if your fatigue seems to set in at a certain time of day. You may also notice certain activities have a bigger impact on your fatigue levels, or that other symptoms often occur alongside your fatigue. All of these insights will help you gain a better understanding of what changes you can make to deal with your fatigue.
Once you understand your energy patterns and what makes you so tired, make a comprehensive schedule for the next few days, weeks, or even months.
While making this schedule, you’ll want to schedule exhausting tasks well apart from one another, with plenty of time between each one for rest and rejuvenation. Make sure you never have to hurry from one task to the next, as this can be particularly exhausting. Include leisure activities on your schedule, such as hobbies and social time, as well as time dedicated to resting.
You can create this kind of schedule for work, errands, home, and anywhere else where you invest your energy.
Reducing the number of tasks you perform in a single day can mean having more energy left when the day is over. Consider whether tasks like vacuuming, grocery shopping, or cleaning need to be done as frequently, or whether someone else may be able to help you with them. On particularly stressful days, let yourself take a frozen meal for lunch so you don’t have to pack a lunch or deal with a restaurant. You can even choose a hairstyle and a style of dress that requires less fuss while still achieving the look you’re going for.
When everything you need for a task is in one place, you won’t have to expend energy remembering where items are, finding them, or gathering them. Make sure all of your cleaning supplies are together and gather ingredients for a meal before you start preparing it.
You can do this at work, too. If you do the same thing every day, make sure all the implements you need for your day are laid out ahead of time and grouped together based on when and how you use them.
While staying active is important after being diagnosed with multiple sclerosis, it’s also key to focus your energy on the things that matter the most to you.
Conserve energy by sitting whenever you can, rather than using more energy standing up. You can get a seat for your shower and a vanity where you can sit while you wash your face, brush your teeth, and more. Sit when you do tasks like gardening, and don’t stand up at work unless your job demands it. If you have a repetitive task, such as folding laundry, move your clean laundry to a sofa where you can sit while you fold it.
People with multiple sclerosis often experience a greater number of MS symptoms when they are too hot. However, cooling down too quickly can also exacerbate symptoms.
It’s important to pay special attention to both indoor and outdoor temperatures when you are planning your days. Avoid exhausting tasks when it is too hot. Turn on the air conditioning before temperatures get past your threshold.
You can even wear passive cooling garments, such as a cooling vest, in situations where you can’t control the temperature and might overheat.
On MyMSTeam, the social network and online support group for those living with multiple sclerosis, members talk about a range of personal experiences. Coping with MS fatigue is one of the most popular topics.
Is a daily struggle with fatigue part of your life with multiple sclerosis? How do you manage your MS fatigue? Share your experiences with fatigue in the comments below or by posting on MyMSTeam.