Overwhelming, disruptive, and difficult to explain, fatigue is the most common MS symptom.
- It can come on suddenly, even after a good night's sleep.
- It generally worsens over the course of the day.
- It tends to increase with heat and humidity.
Your MS fatigue is likely to feel different from anything you've felt before.
It may feel totally overwhelming at times, yet it remains invisible to other people. It can be one of the hardest symptoms for family, friends, and colleagues to understand.
You might find that fatigue interferes with every aspect of your life. To combat fatigue and take back control, get to know this symptom, factors that can worsen it, and ways to manage your energy.
The fatigue that’s unique to MS is called lassitude.
80 percent of people with MS experience this overpowering feeling of tiredness in body and mind.
We don’t know the exact cause of lassitude, but we have identified many factors that can add to your feeling of fatigue.
- Insufficient sleep, which can be related to other MS symptoms like bladder urgency, muscle spasms, or pain. You might also be getting too much screen time before bed, or facing an underlying sleep problem like sleep apnea or restless leg syndrome.
- Depression or anxiety, which are common in people with MS. These mental health challenges can be draining for anyone, but they may lead to a vicious cycle for someone with MS. Your depression leads to feelings of fatigue, which amplifies your feelings of depression, and so on.
- Muscle stiffness or weakness, which requires you to use extra energy to move around.
- Certain medications taken for MS or other conditions
- Heat exposure, such as sitting outside on a warm day.
Once you’ve begun to manage all the issues that contribute to your tiredness, you can tackle MS fatigue.
With the help of your healthcare team, you can identify which factors contribute to your fatigue, and what tools and strategies can be of aid. You can also use the "4 P's" to make daily activities easier and less draining. We'll explore both approaches below.
Regaining Control of Your Energy
Feeling better begins with tackling the issues over which you have the most control.
The 4 P's for Fighting Fatigue
- Plan your days so that you get the most challenging tasks (physical or mental) done when you have the most energy.
- If you’re not sure exactly when your best times are, keep a daily diary for a week or so to track your peaks and valleys of energy.
- It's a fact of life: you can't do it all. (No one can!) So, take the time to figure out what’s most important.
- Think about what really needs to get done today or this week. Then identify what can wait.
- Remember, your time, interests, and priorities are just as important as everyone else’s. Be sure to save some energy and time for yourself.
- Just because you’re having a good day doesn’t mean you should push to get everything done. Exerting yourself that hard will just cause you to hit a wall faster and you’re likely to pay the price for a couple of days after.
- Slow but steady is your best bet, with plenty of brief rests along the way as you need them.
- Remember, listen to your body and let it guide you.
- Don’t do things the hard way when you can do them an easier way. It's easier said than done, considering you may need to break some old habits. Here are some examples to get you started:
- Sit for tasks like showering or preparing a meal.
- Use a motorized cart for shopping or an electric scooter for traveling.
- Arrange things in your house or office so the things you use most often are easy to reach.
In other words, think ahead, use your energy wisely, and listen to your body.
Comprehensive Care for MS Fatigue
Often, the most thorough and effective way to manage this symptom involves looking at your fatigue through a careful lens. You can work with your healthcare team to find out what’s contributing to it and ways to manage these factors. Here are a few ways your team may guide you.
Creating an Exercise Routine
A physical therapist (PT) can recommend an exercise program to improve your strength and endurance. (Yes – exercise actually helps reduce fatigue!) The PT can also recommend aids and devices to help you get around safely and independently with less exertion.
Adjusting Your Activities of Daily Living
The occupational therapist (OT) is an often-overlooked hero of energy management. An OT can provide tips for using your energy wisely, helping you plan, prioritize, and adapt for your daily life and the activities about which you're most passionate. Plus, the OT has gadgets and devices to simplify virtually every task and save your precious energy.
Assessing Your Medications
Your MS provider, PCP, or pharmacist can identify medications you are taking that may be contributing to feelings of sleepiness or fatigue, and perhaps adjust their dosages or timing.
Your MS provider can also recommend medications that may help reduce your MS lassitude, possibly including wakefulness-promoting medications, stimulants, or antidepressants—all of which have benefits in some people with MS fatigue.
Eating for MS
A dietitian can help you identify a meal schedule and specific foods that may increase your energy.
Taking Care of Your Mental Health
Even if you don't struggle with depression, anxiety, or mental illness, a mental health professional is an excellent ally for fatigue. They can introduce you to techniques for managing the unavoidable stresses of everyday life, which are draining for anyone. Feeling less stressed and more in control will boost your energy.
Again, depression and anxiety are common in people with MS and can contribute to fatigue. Reach out to a mental health professional if you are struggling with either.
Another oft-misunderstood professional, a speech-language pathologist (SLP) can be an important partner to help you with cognitive functioning. Reach out to an SLP if your fatigue translates into “brain fog” and you feel like you can’t think clearly—or think at all—until you give it a rest.
If it's an underlying sleep issue that mainly contributes to your fatigue, a sleep specialist can identify and treat these nighttime problems that translate to daytime fatigue.
Every member of the MS care team has a unique set of tools they can offer you to manage your fatigue.
Listen to your body or talk to your primary care provider to identify which options are right for you.
Helping Others Understand Your MS Fatigue
Fatigue is one of those invisible symptoms that others have a really hard time understanding.
They may think you’re just being lazy, you're uninterested, or you’re just not trying hard enough. It’s up to you to help them understand.
We have heard many descriptors of fatigue from people with MS. Here are a few:
- “It’s like slogging through mud with heavy boots on….”
- “I feel like I have weights on my arms and feet….”
- “My brain just hits a wall and stops working until I give it a rest….”
Encourage the people in your life to ask questions. And be sure to give clear signals about what’s going on with you. For example, just give a thumbs up when you’re doing well and have energy to use, and a thumbs down when you’re out of gas.
Even people who love and care about you can’t read your mind, so keep trying to communicate to help them understand.
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