For nearly 96% of people with multiple sclerosis, extreme fatigue is a primary symptom of their disease. Very different from exhaustion, fatigue is all-too-often not acknowledged by doctors and other family members. It is, however, very real – and, for people with MS, it can actually be measured.

Read on to learn more about what contributes to this symptom, and how you can minimize its impact.

What Contributes to Fatigue with Multiple Sclerosis?

While the causes of fatigue can be mysterious and vary from person to person, research has identified many relevant factors including:

• Poor sleep quality, due to pain, spasms, or bathroom issues
• Mood regulation disorders such as depression and anxiety
• Anemia (low red blood cells or hemoglobin in the blood)
• Vitamin D deficiency, which can be linked to not being able to exercise outside
• Diabetes and other hormone-related diet issues
• And certain medications for M.S.

Because M.S. attacks the nervous system, the loss of axons and myelin is also a major factor. Brain signals have trouble navigating through areas of the brain and spinal cord that are damaged by M.S. These messages either have to find alternate routes or power through the damage – in both cases, it requires more energy for that signal to reach its destination. Everything becomes a little more difficult, a little more costly – and that energy cost adds up fast.

Feelings of fatigue are not necessarily constant. They come and go, and can be different from one day to the next. Lifestyle changes can help maximize the good days by improving physical and mental health.

The Power of Exercise

The most important thing you can do to avoid feeling fatigued (and it may seem counterintuitive) is maintain a regular exercise schedule. One study even evaluated the use of “Wii Fit” as a way to encourage low-impact exercise. In the study participants used the system 3 times per week, for 30 minutes each time, for 15 weeks. At the end of the 15 weeks, participants:

• Perceived their fatigue to be significantly decreased (using the Fatigue Severity Scale)
• had a lower anxiety level (as measured by the Hospital Anxiety and Depression Scale)
• reported a decrease in overall intensity of total pain experience (measured by Short-form of the McGill Pain Questionnaire)
• reduced their waist circumference
• reduced their body fat

Gamification or social interaction – such as what the Wii Fit provides – can help overcome the pain and discomfort that can come with exercise and increase motivation, allowing you to enjoy the benefits. Of course, doing low-impact exercises (such as yoga, stretches, and sitting exercises,) or taking a walk outdoors with someone can help too – but movement games are an option to consider. Even short spurts of movement can drastically affect your circulatory system and mood in a positive way.

So, what else can you do?

Other Lifestyle Changes that May Help with Fatigue

Maintaining a healthy lifestyle will help decrease the severity of many symptoms, including fatigue.

Eating healthy foods – particularly lean meats, fruits, and vegetables – can influence your energy levels and overall health. It can also be useful to track the foods that you eat to get a better understanding of the source of the calories that you eat.

Getting plenty of sleep can be difficult, but it is worth figuring out. Sleep helps the nervous system work more efficiently, which can reduce fatigue. It also improves mood and overall health.

Making plans and prioritizing tasks helps you use what energy you have most efficiently. It is important to pace yourself and not overdo it – making plans in advance, figuring out what tasks you absolutely must do, and delegating the rest can help keep you from dipping into your energy reserves.

What should I avoid to combat MS fatigue?

Tobacco is generally bad for you – more specifically related to fatigue, smoking and chewing (and potentially vaping) triggers inflammation (which causes more MS damage and symptoms.) Smoked or vaped tobacco also affects the capacity and efficiency of the lungs. If the lungs are unable to do their job properly, then that is less oxygen to feed the body, and a lot less energy to spare.

Alcohol and Recreational drug use disrupt your body and mind. Chemically, drugs interfere with neurotransmitters, changing how the brain and nervous system react to these important signaling molecules. Physically, both the “highs” and the “lows” of alcohol and drug use can seriously effect the body, and the effects will be more draining in people with M.S., who are already vulnerable. Mentally, alcohol and drugs build bad habits and allow good habits to slip, as well as damage many relationships. This leads to worse overall physical and mental health and builds a “rut” that can be difficult to climb out of.

If you need to overcome your addiction and have M.S., you should do so, but make sure you are in an accredited, medically supervised program. It is not advised to do this alone. It’s better not to start drugs, and if you presently drink alcohol, to not drink too much.

Fast Foods or High Sugar Foods should definitely be avoided too. Fast food is often high oil and high carbohydrate, and – along with high sugar foods – can give a “rush” of energy followed by a “crash” as the body reacts by digesting and storing all of those sugars. This can, in particular, negatively affect diabetics – but everyone should be careful of these energy peaks and valleys. Not only do they directly affect fatigue, but they can contribute to weight issues. Fast food is also often high in salt, which can contribute to high blood pressure. Also, high fat, high sugar, and high salt foods are linked to inflammation and autoimmune damage – so eat such things in moderation!

Lassisitude and Multiple Sclerosis

Lassisitude is often used to refer to a type of severe weariness. While it is hard to describe how it is different from overall fatigue, people with M.S consider it to be different from their overall fatigue.

Lassitude, or “M.S. Lassitude” as it is sometimes referred to, is a daily instead of intermittent occurrence. It will often begin in the morning and worsen throughout the day. Environmental conditions, such as heat and humidity, will worsen it. And it may come on with suddenness, draining energy and the will to perform tasks quickly. Lassitude does not appear to be correlated to disease severity or depression, and it is a major interference in daily life.

Because of its association with M.S. and its unique traits, lassitude It is very likely neurological in origin. Although it is distinct from fatigue, it is very likely that the same lifestyle changes – better sleep, better diet, exercise, and better mental health – will also help with lassitude.

Hygiene comes from the Greek word “Hygieninos” which translates roughly as “healthful.” The word also is related to Hygia, the ancient Greek goddess of cleanliness. This means that the relationship between staying clean and staying healthy has been well-known for hundreds of years. (Though it wasn’t until the mid-19th century that hand washing between patients became standard practice for doctors and nurses.)

This holds true for MS Warriors. But, even the basic actions of personal hygiene can be out of reach a times:

• Pain limits movement
• Fatigue limits energy available to do it
• Depression drains what energy remains

Still, it is important. The CDC states that:

“Many diseases and conditions can be prevented or controlled through appropriate personal hygiene and by frequently washing parts of the body and hair with soap and clean, running water (if available).”

Key hygiene practices include hand-washing, showering, and toothbrushing. Even just the self esteem boost from being clean is enough to be worth the trouble.

Read on to see the best practices for personal hygiene – and how you can put them into practice in your own life.

Washing Your Hands

Washing your hands is, hands down (pun intended), one of the best ways to prevent sickness. The CDC advises people to wash hands before and after eating, after using the bathroom, after coughing or sneezing, or after handling dirty or sticky things.

We use our hands for so many things, touching everything around us, and also our faces. This means that our hands pick up a lot of germs (bacteria, viruses and other microbes, as well as pollutants and dirt) and carry it right to our mouths, noses, and eyes where they can enter the body.

Our hands can also pass these things on to others as we touch food, objects, and even other people’s hands. Washing your hands and avoiding touching your face helps prevent this from happening.

The WHO (World Health Organization) has a very in-depth (and catchy!) video on how to properly wash your hands, and you can view it here.

• Run your hands under clean, running water.
  • It can be warm or cold, whatever is most comfortable for you.
  • Using hot water may feel clean (and it does kill some bacteria) but it also damages your skin.
  • After wetting your hands, you may turn off the tap to conserve water
• Lather your hands with soap for ~20 seconds
  • Both liquid and solid soap will work, but it should lather.
  • Scrub the backs of your hands, between your fingers, and under your nails
  • To remind yourself to wash long enough, sing the chorus of your favorite song twice
• Rinse your hands well under running water until no soap bubbles remain
• Dry your hands with a clean towel or air dry them.
  • If you are using a paper towel, use it to turn off the tap and open the door.

 

You can also use hand sanitizer that has at least a 60% ethanol base if you don’t have access to a sink or
to soap. But, soap and water is very effective at preventing both infection and transmission of disease.

Should I use antibacterial soap?

Antibacterial soap is no better than normal soap for preventing diseases. In fact, most of the disease-preventing action from soap is from how it removes germs and dust, not from killing them.

Soap molecules separate dirt and potential pathogens from our skin by taking advantage of the fact that most of these gross particles stick to our natural skin oils. Soap molecules are a surfactant – one side of their molecules is attracted to oils, and the other side is attracted to water. These molecules go between the water on the hands and the oils on the skin, lifting them off. Then, the water rinse is able to remove all of it. This rinse is what cleans the hands, not the antibacterial activity of the soap.

Antibacterial soaps are not better. Hand sanitizers work because of their ethanol content. 60% ethanol (or even higher) dries out and breaks apart the membrane or skin that surrounds many microbes, killing them off. However, this does not work against norovirus or cryptosporidiosis, both of which cause diarrheal diseases. Hand sanitizers also don’t remove pesticides, heavy metals, or other pollutants and do not work very well on dirty or greasy hands.

Ethanol (or rubbing alcohol) can also dry out the skin and may make symptoms worse, so be careful.

Showering, Baths, and Multiple Sclerosis

There are no strict CDC guidelines about showering or bathing, but it is important to wash the body periodically if possible. Removing dead skin and built-up oils prevents irritation, inflammation, and can even prevent disease. Warm water may help with joint pain.  Showering and bathing can also help with mental health, as feeling clean is worth a lot.

However, these actions can be beyond the energy or ability of severely affected MS Warriors. Showering can be difficult for people with MS, weakness and heat intolerance are a just a handful of obstacles.

If you have difficulties showering, here are some tools and adjustments that can help.

 

Toothbrushing and Flossing

When the mouth is not regularly cleaned through brushing and mouthwash, bacteria levels grow in the mouth. These bacteria encourage cavity formation, impacting the ability to eat, but also create a risk of these bacteria, along with particles of food, passing into the bloodstream. Much like in leaky gut, this increases inflammation in the body. However, mouth bacteria entering the bloodstream can also lead to infection and sickness. Both of these factors can influence heart and lung health.

So, how do you properly brush your teeth?

Colgate’s website has a very in-depth article about toothbrushing techniques that you should definitely check out. In general, there are a few basic recommendations:

• Brush your teeth at least twice a day. Brushing after every meal is recommended but not
  necessary.
• Use fluorinated tooth paste (which helps shore up your teeth against normal wear and tear)
• Brush for at least 2 minutes, using circular motions to really scrub off the plaque. An electric
  toothbrush does this part for you.
• Floss daily, making sure to get into the gums and the bottoms of the teeth, if possible.
• Rinse the mouth thoroughly with water.

Avoiding sugar and using mouthwash can also help a lot.

Clean Up and MS

So that takes care of you – what about your space, where you and your family lives and where germs enter your environment? Keeping your home and work clean can protect you against disease and sickness. Getting help with cleaning your space is sometimes easier to articulate then getting help to clean your body, and having a clean home keeps morale up.

However, be careful – many harsher home cleaners may provide a spotless space, but have chemicals that damage the body and trigger an immune response. Gentler cleaners with natural ingredients work well and it is easier to know what is in them and control what ends up in your body.

The need for new research

Two factors are increasing the study of non-medication-based treatments for pain:

1. Increased understanding of the impact of chronic pain because of new research
   • ⅔ people with chronic pain reported decreased ability to exercise, sleep, perform household chores, or drive a car
   • “The financial cost of chronic pain is roughly the same as cancer or cardiovascular disease.”
2. Overdose and death from opioids has become a major health crisis
   • “Every day, more than 130 people in the United States die after overdosing on opioids.”

New prescribing guidelines aiming to reduce opioid use disorder can also make it challenging for people with chronic pain to get treatments

Mindfulness-based stress reduction research

A January 2019 published meta-analysis in Evidence-Based Mental Health explored the effectiveness of alternative chronic pain treatments. The researchers analyzed 21 randomized controlled trials (12 of which met subsequent quality standards) on mindfulness-based stress reduction, cognitive behavioral therapy (CBT), and chronic pain.

Chronic pain as a result of MS was not specifically studied. Chronic pain sources included musculoskeletal pain, fibromyalgia, chronic lower back pain, rheumatoid arthritis, and others. 

Mindfulness-based stress reduction and CBT showed “clinically important advantages relative to control” for physical functioning, pain intensity, depression. This is particularly fascinating as control participants in some study arms received standard-of-care pain management, including medications.

 

What is mindfulness-based stress reduction?

As the name suggests, mindfulness-based stress reductions are interventions that help reduce stress by cultivating an awareness of the current moment (mindfulness). Meditation, breathing exercises, and yoga are 3 examples of mindful exercises.

The goal of these exercises is to encourage a body awareness and bring the focus to the present. These strategies make it easier to recognize body sensations, emotions, and thoughts and then to let them go.

In the research paper discussed above, the mindfulness exercises were administered by certified MBSR teachers or other trained professionals.

How to practice 4-7-8 breathing

You can try these strategies out for yourself! A good one to start with is mindful breathing, also known as diaphragmatic breathing or abdominal breathing. The goal of this exercise is to pace your breaths and generate a calm feeling. 

 

Quick tips:

• Sit with your back straight
• Try to keep your tongue touching your gums just above your front teeth during the cycle. When you exhale with your mouth open, you will breathe around your tongue

 

Steps:

1. Exhale completely through your mouth — make a whoosh sound
2. Close your mouth and inhale through your nose. Count to 4 in your head
3. Hold your breath and count to 7
4. Exhale completely through your mouth, making a whoosh sound, and count to 8
5. Repeat until you complete the cycle 4 times

 

First, try to complete the exercise twice per day. As you continue, you can add daily repetitions or increase the number of breaths that you take. 

Looking for other mindfulness exercises? Check out these 22 individual and group strategies

Chronic pain and medications

Medications will still continue to be an important part of the toolkit in the battle against chronic pain. It is not always possible to cure chronic pain. Work with your lupus treatment team to establish a safe and effective regimen. Even over-the-counter pain medications can be dangerous when taken at high doses or when taken in conjunction with other medications. Before starting any new medication, talk to your rheumatologist.

 

Prescription-strength medications, including opioids, are used in cases of severe pain. While opioids are strong pain relievers, they also come with a high risk of dependence and addiction. 

 

Opioid overdose risks are increased for people with reduced kidney or liver function. Be sure to check out these resources if you or a loved one is using an opioid for pain management.

• Safe Use, Storage, and Disposal of Opioid Drugs — by the American Academy of Family Physicians
• Opioid Overdose — by the U.S. National Library of Medicine

Over-the-counter (OTC) medications

OTC medications are available without a prescription, though they may still come in a variety of dosages. Be sure to read the labels in order to ensure you are taking a safe dose for your body weight. Also, it’s a good idea to bring up all new medications with your MS treatment team.

There are 2 main types of OTC pain relievers:

1. Acetaminophen
   1. Tylenol
   2. Ofirmev
   3. Mapap
2. Nonsteroidal anti-inflammatory drugs (NSAIDs)
   1. Aspirin
   2. Ibuprofen (Advil; Motrin)
   3. Naproxen (Aleve)

Mediation & Mediator Variables

When designing research studies, it is necessary to consider what will be measured. And, part of that process is defining the independent and dependent variables.

Independent variables are the variables that are changed intentionally by the researchers (different medication dosages, etc.) or are standard variables like age or time. The measurement of these variables does not change as a result of some other variable.

Dependent variables, on the other hand, are variables that are being studied and measured. A hypothesis is a guess at the change in the dependent variable based on the presentation of some independent variable.

Mediation models are another type of study which include mediator variables. Mediator variables are used to clarify the understanding between an independent variable and a dependent variable. In this way, mediator variables attempt to describe chains of action that may be influenced.

Sleep Strategies

Looking for ways to get to sleep faster and stay asleep? These may help:

1. Avoid blue light (cellphone screens, television, computers, etc.) 30 minutes before bed
2. Wake up at the same time everyday (weekends, too!)
3. Ban pets from your bedroom if they wake you up in the middle of the night
4. Keep your room slightly cooler than normal
5. Exercise daily — but try not to work out too close to bedtime
6. Limit naps. Try to schedule naps and aim for consistency of schedule
7. Watch your caffeine intake
8. Do not use alcohol to help you fall asleep. It decreases sleep quality and can lead to dependence issues

Multiple Sclerosis Treatment Team

Neurologist

Typically, prior to being formally diagnosed with multiple sclerosis, you will be referred to a neurologist because of certain symptoms. Some neurologists specialize in MS, while others treat a broader range of neurological disorders.

Because of this experience and specialization, your neurologist will serve as the cornerstone of your MS treatment team. Be sure to build around a neurologist that you trust.

Neurologists are doctors that have studied the nervous system. To help measure the nervous system, neurologists may use the following tools and tests:

• Computed axial tomography (CAT) scans
• Magnetic resonance imaging (MRI)
• Ultrasounds of the head and/or neck
• Electroencephalography (EEG)
• Nerve conduction studies (NCS)
• Examination of gait
• Tests of reflexes or sensation

 

Physiatrist

Physiatrists are also known as Physical Medicine and Rehabilitation physicians. They are doctors that may have sub-specializations including brain injury, spinal cord injuries, sports medicine, and more.

Often, a physiatrist will be the leader of the rehabilitation team. The goals of working with a physiatrist is to develop a treatment plan that helps you live at your highest level possible while minimizing any limitations you may experience. These goals can be attained through the use of exercises and assistive devices.

 

Primary Care Doctor (PCP)

Your primary care doctor is focussed on your overall health. She will act as the point person or coordinator of your care team, not just your MS treatment team.

While your neurologist will likely act as the key decision maker for you MS treatment, it is useful for your PCP and neurologist to work together. MS can cause challenges throughout your body and it can be challenging to find the root cause of symptoms without a collaborative treatment team.

Occupational Therapists, Physical Therapists, & Speech/Language Pathologists

These clinicians specialize in rehabilitation to promote mobility, function, and quality of life. They can be useful for rebuilding strength and flexibility to ensure autonomy and quality of life.

An occupational therapist’s job is to find ways to make it easier for you to accomplish your day-to-day goals including tasks like cooking, eating, getting dressed, and more. An occupational therapist will work with you, your family, and your community to find clever ways to let you continue to live your own way.

If you are having a hard time managing pain or staying active, adding a physical therapist to your MS treatment team can help. Your joints will be healthier if they are active, and finding ways to keep you active is what your PT is best at.

Speech/language pathologists (S/LP) provide support and solutions for speech production to ensure clear and accurate communications. They can also help with swallowing problems to make sure that eating is safe.

 

Psychologists, Psychiatrists, Neuropsychologists, & Counselors

These doctors and counselors specialize in the study of behavior and the mind. They help support people and develop strategies to combat depression, anxiety, stress management, fear and phobia management, and more

These providers can also track and help improve cognitive changes including memory problems, attention issues, and difficulty with complex problem-solving.

Note: Psychiatrists are able to write prescriptions whereas psychologists and counselors rely on non-medicinal methods only.

Dietitians and Nutritionists

NOTE: Dietitians receive specialized training and a degree – they can either be registered dietitians (RD) or registered dietitian nutritionist (RDN). The term dietitian can only be used by those that have met the professional requirements which include a bachelor’s degree with accredited nutrition curriculum, satisfactory performance on a registration exam, and an internship at an approved facility. View additional information on the qualifications here.

The term nutritionist is NOT protected. That means that any person may call themselves a nutritionist whether they have any specialized training or not – and some accreditations are astoundingly easy to receive. To this point, Dr. Ben Goldacre was able to have his dead cat, Hettie, accredited as a professional member of the American Association of Nutritional Consultants for just $60. Because of this, it is important to research the background of any nutritional information you receive and maintain an open dialogue with your gastroenterologist and primary care physician about your health.

• Dietitians change the foods you eat to help assess, diagnose, and treat nutritional problems.
• Dietitians may establish individual health plans to meet goals and can leverage special services, including tube feedings, diets, and more.

What are SMART goals?

SMART is an acronym that can help you remember the important aspects of a good goal. All goals should be:

• S – specific
• M – measurable
• A – attainable
• R – relevant
• T – time-framed

When you follow the SMART goal setting technique it allows you to set realistic expectations, track your progress and it will help you to more easily obtain your goals. When using the SMART technique, you will think in the long term. For example, if this is your New Year’s resolution, think about what you want to accomplish the entire year and break this goal into smaller chunks of time.

A good way to start is by making two lists.

1. List #1
   • Make a list of everything you want to accomplish to help you get and stay healthy over the course of the year like walking or running a 5K or meditating for 30 minutes each day
2. List #2
   • Create a short list of specific health priorities for each month. Start with your first month and add 2 priorities. Then, only add 1 priority for each month thereafter

Digging into SMART goals

Once you have created your lists of top priorities and long-term goals, it’s time to put your plan into action. Here are the five criteria of the SMART technique for setting your health goals and allowing you to have the best chance of success.

• Specific
  • The more specific you make your goals, the better. Being specific will help you focus as well as help you see the goal being achieved.
  • Instead of saying “I’m going to start walking,”  be more detailed with your goals. For example: “I will walk around the neighborhood for 20-minutes on Monday, Wednesday and Friday morning before leaving for work.”
  • Be sure to include how long you will do this routine before increasing the behavior.
• Measurable
  • When have you achieved your goal? You won’t know unless your goal is measurable.
  • Instead of saying “I will eat better,” add an element that can be measured. For example: “I will eat 5 servings of vegetables each day.”
  • Only make goals that have solid measurable criteria.
• Achievable
  • It’s exciting to start a health program and it’s easy to get caught up in the amazing possibilities for a future YOU. But, it is extremely important that you make sure the goals you are setting are actually attainable.
  • For example, a goal of walking in a 5k charity walk in 3 months is much more achievable than making a goal to run a marathon. 
  • Gradually increase your goals as you succeed and you can build up to new goals that previously weren’t achievable.
• Realistic
  • Reaching your goal feels amazing…not reaching your goals can be discouraging. Before you commit your goals to a list on fridge, make sure they are doable.
  • Make sure your abilities and commitments will not interfere with realistically being able to achieve goals. It’s great to be ambitious, but impractical goals are easily abandoned.
• Timely
  • “Someday” will not get you out of bed early for your morning walk. Putting a date to your goals will give them accountability.
  • For example, “I will walk a 5K in 3 months and will walk for 15 minutes every Monday, Wednesday, and Friday leading up to the event.”

You can do it!

Regularly re-evaluating your goals is just as important as setting them. You can use the same SMART goals framework for re-evaluation. If it’s too easy (or too hard) you can adjust either the specifics, the measurement, or the timeframe to make it more appropriate for you.

Do not try to stick with goals that make you miserable. This will only make it more difficult to achieve them, which may eventually lead to not even attempting to achieve your ultimate goals. Choose activities that you enjoy doing and eat healthy foods that you enjoy eating.

And always remember: You’ve got this!