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Multiple Sclerosis (MS) Fatigue

Other ways multiple sclerosis (MS) fatigue can impact daily living

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​​​​​​​​​​Heat and cooling

Most people with MS find that an increase in their core body temperature can trigger or worsen fatigue. This is because heat can slow the speed of messages that get sent through your body, which means that your nervous system uses more energy than it typically would. Learn more about why MS fatigue happens.

Even a small increase in your core body temperature, like a quarter to half a degree, can temporarily increase fatigue and worsen your MS symptoms. This increased sensitivity to heat can be brought on with exercise, sunbathing, using a hair dryer, taking a hot shower, or having a fever.​

Learn more about heat and temperature sensitivity with MS.

If heat is affecting your MS symptoms, here are some ideas to keep your core body temperature cool.

  • Avoid or reduce the sources of heat, if possible. Limit the amount of time you spend with heat, like finding shade on sunny days or limiting how long you spend in the shower. Try to avoid hot baths or hot tubs.
  • Drink enough water. Choose cold drinks.
  • Eat frozen food or ice cubes or ice chips.
  • Exercise in cooler environments.
  • Use fans or turn on the air conditioner, if possible.
  • Wear cooling clothes, light fabrics, or clothes that are light in colour.
  • Look into cooling bedding options, like pillows, mattress pads, and sheets.
  • Take a cool shower.

Less is known about how cold impacts people with MS, but it is clear that some people experience a temporary worsening of symptoms, including fatigue, when it is cold out.

Typically, people with MS will report these issues when it is cold:

  • difficulty moving because of increased stiffness or spasticity 
  • more pain, or feeling achy and uncomfortable
  • more fatigue, which might be because they are moving less or because of lower moods during winter months 
  • more sensory symptoms such as the MS hug (a squeezing feeling around your chest), or numbness and tingling

If cold is affecting you, make sure to dress warmer, try to stay in consistent temperatures, eat soup, and drink warm beverages to help manage these symptoms.

Grief

Part of having MS involves grief around the changes that come with this disease. This is true for the person living with MS and their family, friends, and support people.

Grief in MS is a complicated and ongoing process. Grief can occur when you are first diagnosed with MS, with each MS progression, or even after years of having MS.

There are many stages to grief that involve a variety of emotions. This can be exhausting.  ​

Making room for grief

It is important to make room for grief around MS and the losses or changes that have happened. This is true if you have MS or if you support someone living with MS. Grief around MS is complex. The grieving process can be ongoing and can happen for each loss or change that you experience.

Making room for grief can take many forms, like journaling, going to a support group, reading self-help books, seeing a therapist, practicing self-compassion, or performing a ritual. Acknowledging the grief in some way is important.

Learn more about grief and grieving.

Communication

Communication is key to healthy, strong relationships. But MS fatigue can make communication difficult.

It can also be hard to describe your fatigue to family, friends, co-workers, healthcare providers, and support people. Understanding what causes MS fatigue may help you communicate your experiences.

Difficulty finding words

Everyone can have trouble finding words. But if you have MS, you may find it even harder when you are tired or are experiencing heightened emotions like frustration, anger, or excitement. You may find yourself saying things like “It's on the tip of my tongue" or “I forgot what I was going to say." MS fatigue can make word-finding difficulties more frequent and more noticeable.

If you are having trouble finding a word, pause, take a breath, and try again. Breathing from your diaphragm or stomach will help improve your focus. Give yourself a few seconds of silence to think of the word.

You may want to develop a hand signal or gesture with the people you communicate with most often to let them know when you need more time to process a thought. This will reduce the number of interruptions, which will reduce frustration related to communicating.

If you are having trouble finding a specific word, try using a description instead. Talk about where it is located, what it does, or what it looks like. Many English words have similar meanings, so you can also use a similar word, like saying restroom, washroom, toilet, loo, or john. You can also try thinking of opposites, so if you are having trouble finding the word “fork," for example, you can say “it is not a spoon."

Heightened emotions can make it hard to think, find words, and organize your thoughts. Be aware of your emotional states and review the strategies for managing your mental and emotional health. Try to avoid important conversations or visits if you are feeling too fatigued or feeling like your emotions are too high. Wait until you are feeling better and more rested.

Dysarthria (slurred speech)

Dysarthria is a medical term meaning that someone's speech is slurred. Dysarthria happens because of changes in muscle strength, speed, and coordination of the tongue and lips. It is also impacted by breathing. Fatigue will make this symptom of MS worse. 

Here are some ideas to help with dysarthria.

  • Reduce any background noise, like a TV or radio, when you are having a conversation.
  • Look at the person you are speaking to. This will let them watch for facial expression, mouth movements, and gestures to understand you better.
  • Slow down how quickly you are trying to talk, speak slightly louder, and over-exaggerate your mouth movements.
  • Take deep breaths from your diaphragm.

If you are still having trouble communicating, try writing instead of talking, use a gesture, or try saying it in a different way. Avoid giving up, as this can leave you feeling frustrated, which might make the communication challenges worse.

Learn more about dysarthria.

Dysphagia (swallowing difficulties)

Dysphagia is the medical term that refers to someone with swallowing difficulties. If you have MS, you may have found yourself thinking or saying “I choke on my spit" or “I cough with food or liquid."

To help with dysphagia:

  • Remind yourself to dry swallow with effort. This will help to reduce saliva buildup and avoid coughing on saliva. You will also develop an ability to start a swallow and improve the strength of your swallowing.
  • Eat harder foods earlier in the day or earlier in the meal when you are feeling less fatigued. For example, eat a salad for lunch instead of for supper.
  • Eat before going to social events that involve food. This will make you less hungry at the event and reduce your need to focus on eating for nutrition purposes. If you go out to eat, going out for an appetizer or dessert in the evening may be easier than going out for a full meal.
  • Avoid mixing a solid and a liquid in the same mouthful. This includes food like soup with a thin broth (like chicken noodle soup), cold cereal with milk, or juicy fruit like watermelon. While you chew the solid, the liquid often goes down your throat before you are ready to swallow, which can cause you to cough or choke. Have these items when you are least fatigued.

Productivity, work, and fatigue

Productivity is any activity that contributes to society. It can be paid or unpaid. Productivity can include things like work, volunteering, school, housework, childcare, caring for elders, errands, pet care, and participating in your community. Being productive is important to a person's health and wellbeing.

MS fatigue can impact your productivity. You may have noticed experiences like:

  • “Fatigue makes it difficult for me to do my job."
  • “Grocery shopping wiped me out. I have no energy to cook a meal."
  • “I can't keep up at school."
  • “I have no energy for myself or my family after I'm done work."

With support, you can keep doing meaningful, productive activities.

For people living with MS, fatigue is the most commonly reported symptom for leaving the workforce early. Leaving the workforce earlier than you'd like, reducing your work hours, or taking a leave can result in changes to:

  • your finances
  • your medical benefit coverage
  • roles and duties at home and in your relationships
  • your emotions

Talk to your healthcare provider, union representative, or human resources department about workplace modifications or accommodations that can help you remain successful at work, volunteering, or school.


Current as of: September 14, 2023

Author: Calgary MS Program - Allied Health