fatigue

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From QUEST Volume 12, Number 1, JANUARY/FEBRUARY 2005

Fatigue - Where has your get-up-and-go gone?

by Von Hatten

In its broadest sense, fatigue is defined as a lack of energy, a subjective

feeling of being tired. Fatigue also occurs when muscles decline in force — in

other words, they poop out with overuse.

Most people complain of fatigue at one time or another, says C. Haviland,

a physician at St. Mercy Medical Center in Toledo, Ohio.

At any one time, “Around 20 percent of Americans claim to have fatigue intense

enough to interfere with their having a normal life,” Haviland says. She

estimates that physical causes account for 20 percent to 60 percent of all

fatigue, and emotional causes for 40 percent to 80 percent.

People with neuromuscular diseases are subject to all types of fatigue, and

particularly muscle fatigue caused by their disorders. This isn’t the same as

muscle weakness, which is more or less a constant condition caused by your

neuromuscular disease. Muscle fatigue can occur any time you make greater

demands than your muscles can handle.

MDA Research Development Director Sharon Hesterlee says muscle fatigue is

particularly associated with those who have myasthenia gravis, ALS, spinal

muscular atrophy (SMA), myotonic disorders, metabolic disorders (such as

McArdle’s and Tarui’s diseases) and mitochondrial diseases.

But fatigue also can creep into the lives of those with many of the muscular

dystrophies as muscles weaken and require greater energy to perform the same

activities.

Types of Fatigue

Understanding why fatigue occurs and what to do about it will help you get on

the right track to living a fuller, healthier life.

The first step toward managing your fatigue level is recognizing the cause. Your

fatigue may occur for emotional or physical reasons, or a combination of both.

Each type can vary in severity — from mild to debilitating — but both kinds are

treatable.

Fatigue — Emotionally Speaking - Depression

Those experiencing depression (and it can affect anyone) may have symptoms of

fatigue and listlessness. Their bodies aren’t tired, but they’ve lost their

oomph.

Your doctor can help you determine if you’re clinically depressed and advise you

on how best to treat fatigue caused by depression.

Boredom and Surroundings

Sometimes people with neuromuscular diseases experience fatigue because they’re

not active, physically or even mentally. According to Margaret Wahl, MDA Medical

and Science Editor, “If people are underoccupied during the day, they aren’t

stimulated, and that makes it hard to sleep.”

Thus begins the cycle of feeling tired and having little energy, followed by

poor sleep and more fatigue. Mental or physical stimulation leads to activity,

which uses energy, resulting in a normal level of tiredness at the end of the

day.

Wahl recommends doing something with your mind if you can’t do much with your

body. If you aren’t involved in work or activities that interest you, you might

try crossword puzzles, books, games, and arts and crafts to keep your mind

stimulated and focused.

Sitting passively for many hours at a time in front of the television or

computer without real engagement isn’t recommended.

There may be other causes of your fatigue. Your surroundings, for example, may

add to the problem. Warmer temperatures during summer outings and even noise may

contribute to fatigue.

It’s best to consider these factors when planning your day.

Stress

“Stress depletes our energy — it might even dip into our reserve energy,” says

Latham, LMSW-ACP (Licensed Master of Social Work-Advanced Clinical

Practitioner) at the University of Texas at Austin. Latham notes that stress —

seen as an organic response to emotional or mental pressure — causes certain

hormones, such as cortisol, to be released into the body to better handle the

crisis.

However, when stress continues for long periods, it can leave your immune system

vulnerable to potential health problems. Stress also can be a source of high

blood pressure and heart problems. In fact, “70 percent to 80 percent of all

visits to the doctor are stress-related,” Latham says.

Stress can be caused by psychological, physical and environmental changes. The

solution?

Learn to identify the source of stress and manage it to live a healthier life.

Latham recommends that you:

a.. Redirect your attention to visual images that are positive, peaceful or

relaxing.

b.. Focus on deep, slow, purposeful breathing.

c.. Repeat until you reach a relaxed state.

Sleep

Sleep is as necessary to our survival as food and water. It recharges our

bodies’ batteries. Not getting enough sleep can cause mood swings and fatigue,

and keep us from focusing on the simplest of tasks.

To prevent fatigue consider your sleep habits. Read “Tips: Getting a Good

Night’s Rest” for suggestions that may help you get quality nighttime sleep and

more complete daytime alertness, thereby avoiding fatigue.

Fatigue — Physically Speaking

Having a neuromuscular disorder means that you’ll have good days and,

invariably, those not-so-good, low-energy days.

When you’re feeling good, you may be more inclined to take advantage of your

energy level by doing more, which may result in fatigue by day’s end. Likewise,

if you’re having one of those not-so-good days when every task requires an

exorbitant amount of effort, fatigue also may become a factor. To make matters

more complex, fatigue may set in if you simply don’t do anything at all.

So what do you do?

Exercise

If you’re active: Pace yourself. Take frequent breaks during your activities and

make a quick assessment of how you feel. Then ask yourself if you can continue

your activity without wearing yourself out or causing pain later in the day.

Be wary of activities that involve a lot of repetitive motion, such as playing

catch. These may cause not only fatigue, but muscle soreness. With time and

close attention to your body, you’ll know where to draw the line.

Fatigue can be caused by a lack of exercise, too. Most doctors say that exercise

conditions us, makes us feel better and improves our overall health. It also

improves cardiovascular and pulmonary function and is known to decrease anxiety

and depression.

But remember, not all people with neuromuscular disorders can be lumped into one

exercise basket. If you want to get more exercise, but are afraid of the fatigue

factor, talk to your doctor for input on what might be best, given your physical

condition.

Some people have the energy to get light to moderate exercise such as swimming

one or two times a week.

Others might choose to use a hand/foot ergometer. This device allows people to

exercise their upper and lower extremities while in a stationary position. The

common stationary exercise bike is one type of ergometer, but others are made to

exercise your arms. Each will help maintain and improve your heart and lung

efficiency as well as your flexibility and mobility.

If active exercise isn’t possible, your doctor may suggest passive exercise in

the form of physical therapy that will get your heart pumping and the blood

flowing. This might include raising and lowering your arms with or without light

weights (range-of-motion), playing catch with a lightweight beach ball, and body

stretches.

If you can do so without causing pain or fatigue, try adding a few more minutes

to your exercise routine and take note of how it makes you feel. Be realistic

when setting exercise goals. It’s not about how many times around the block you

push, how much weight you’re lifting, or the length of time you exercise. It’s

about getting some level of exercise, period.

On not-so-good days, you may be feeling blah, fatigued or unmotivated. What

then?

Peggy Hoemeke, an exercise physiologist and physician’s assistant at Loveless

Medical Center in Albuquerque, N.M., recommends doing some light activity.

“I wouldn’t recommend exercising at the same intensity level you would normally

do, but some passive range-of-motion exercises and stretching activities are a

good idea.” She notes that a light exercise regimen “will help to increase blood

flow to the muscles without draining your energy or wearing you out.”

Just a little exercise might well resolve your fatigue and lift your mood as

well.

Ouch!

The exercise adage “no pain, no gain” doesn’t hold true for those with physical

disabilities.

While exercise is a good thing, you’d be ill advised to push yourself too hard —

excessive amounts of exercise are counterproductive. In diseases like Duchenne

muscular dystrophy (DMD), muscle cell membranes may deteriorate more quickly

with too much exercise. In diseases that don't affect the membranes, moderate

exercise is considered less harmful, but one should still use common sense.

Muscle soreness that lasts for more than a day can be self-defeating, too. The

physical and emotional energy you exert trying to cope with the resulting pain

can cause fatigue. It might even cause you to lose sleep or prevent you from

sleeping well. Again, consult your physician for the best exercise plan for you.

“Patients with neuromuscular diseases like Duchenne MD are bothered more by

fatigue than they are by weakness,” says Ed Goldstein, director of MDA’s clinic

at Children's Health Care of Atlanta. Goldstein says there’s no clear evidence

showing that exercise speeds muscle weakness in boys with DMD.

“Leading an active lifestyle won’t hurt your child, and I encourage my DMD

patients and their families to be active each day.”

He advises families to plan activities suited to their child’s level of strength

and endurance, use adaptive equipment as necessary and allow sufficient rest

afterwards.

Heart and Respiratory Problems

If you’re not breathing easily, your body is working harder to receive the

oxygen it needs, which may make you tired. The cause may be heart and lung

problems, which may lead to fatigue.

It’s not surprising that the heart is affected in many people who have

neuromuscular disorders, says MDA’s Margaret Wahl, since the heart is a muscle.

Cardiomyopathy, a problem with the heart’s mechanical pumping action, is often

found in Duchenne and Becker MDs and can occur in other neuromuscular

conditions.

The muscles that control your breathing can also gradually weaken, interfering

with your body’s efforts to take air in and let it out. This can occur in many

neuromuscular disorders, particularly the muscular dystrophies, myasthenias,

motor neuron disorders and metabolic muscle diseases.

While it’s normal to experience some changes in breathing due to your sleeping

position and state of consciousness, if you have weakened respiratory muscles,

you may have lowered oxygen levels and high carbon dioxide levels during deep

sleep. This might leave you feeling groggy during the day, or feeling dull,

apathetic, or also depressed. It might also leave you with a morning headache.

If you’re having problems like these talk to your physician. Treatments such as

assisted ventilation with any of several mechanical devices may be right for

you.

A Newer You

These are just a handful of the more common causes of fatigue and some potential

solutions. Take a close look at your day-to-day activities, sleep patterns,

stress levels, and exercise habits to determine how fatigue affects your life.

Talk to a health care professional and get expert advice. There are other

medical conditions — such as thyroid deficiencies — that could be contributing

factors and should be treated.

Then, make the changes that will help you live life to its fullest.

Tips: Getting a Good Night’s Rest

• Sleep only when sleepy.

• If you can't fall asleep within 20 minutes, get up and do something boring

until you feel sleepy.

• Don't take naps during the day. If you must nap, do so before 3 p.m. and sleep

less than an hour.

• Go to bed and wake up at the same time every day, even on weekends. Your body

will become accustomed to the cycle.

• Refrain from exercise at least four hours before bedtime.

• Develop sleep rituals: Before turning off the lights, listen to relaxing

music, read, or do some stretching exercises.

• Only use your bed for sleeping. Avoid watching TV, reading or paying bills in

bed.

• Stay away from caffeine, nicotine and alcohol at least four to six hours

before bed.

• Have a light snack before bed, such as cereal and milk. Milk contains

tryptophan, which acts as a natural sleep inducer.

• Take a hot bath 90 minutes before bedtime.

• Make sure your bed and bedroom are quiet and comfortable with few light and

noise distractions.

Adapted from National Sleep Foundation, www.sleepfoundation.org, by

Thorpy, director of the Sleep-Wake Disorders Center at Montefiore Medical Center

in Bronx, N.Y.

• To determine your sleep hygiene take a short test from Discovery.com. Visit

http://discoveryhealth.queendom.com/sleep_hygiene_abridged_access.html.

• Also see “Better Nights for Better Days,” Quest, October 2000.

Tips: Saving Energy

There are many ways in which you can save your energy and fight fatigue. Some

you probably do every day; others you might consider.

Around the House

• Store frequently used items in places with easy access. For instance, leave

clean dishes on their drying racks and use them again rather than put them away

with each use. Let pots and pans dry on the stovetop, where they’ll be ready to

use again. Also, for an easier reach, store household items at waist level.

• Economize your trips around the house. When cleaning the living room, for

instance, create stacks of items that belong in other rooms. When you’re done,

make one trip to each room with those items rather than repeated trips.

• Use a utility cart with wheels to maximize your efforts. It can also help you

transport groceries, laundry or dishes quickly, easily and safely.

• Consider using a grabbing device that allows you to pick up items such as

shoes without having to bend over. Or store shoes on a raised shoe rack to avoid

straining to pick them up each day.

• Get help, such as a service dog, an attendant or a maid. Also, contact public

service organizations in your community. Many have programs whose members must

fulfill community service hours by doing things like lawn care, dog walking and

grocery shopping.

• Organize your schedule by placing the most important tasks at the top of your

to-do list and doing those tasks first.

• Save your activities for the time of day when you feel your best.

• Use bathroom aids to your advantage. Grab bars, shower chairs, raised toilet

seats and handheld showers offer the aid you need without the struggle.

Around the Town

• Run errands wisely by using drive-throughs whenever possible, i.e., at

pharmacies, photo labs, banks, video rental and library book returns, oil change

facilities and dry cleaners.

• Get to know businesses in your area. Soon the staff will come out to your car

to assist you if they know you’re dropping by.

• Take advantage of strip malls. You can park, get your hair cut, shop for

clothes and other items, and go grocery shopping without having to get in and

out of your car numerous times and fight the stresses of traffic.

• Let your mouse do the walking by shopping online. If you prefer to shop in

person, use the Internet to help you focus your trip by finding out which stores

carry the items you intend to purchase. Also, order stamps, prescriptions and

digital camera photos online.

• Plan your outdoor activities with accessibility in mind. Call campgrounds,

parks and nature trail headquarters before you venture out to learn if the venue

is suitable for you. Are there level wheelchair parking areas, accessible

bathrooms and water fountains, and trails safe for wheelchairs?

• Know what to expect — this can reduce fatigue-causing stress. Also, plan

according to weather as temperature extremes can be quite debilitating. Ask

friends with abilities similar to yours for recommendations on places to go that

are accessible.