Where has your get-up-and-go gone?
Where has your get-up-and-go gone?
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 Julie C. Haviland, a physician at St. Vincent 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
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 depletes our energy — it might even dip into our reserve energy,” says Diana 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:
- Redirect your attention to visual images that are positive, peaceful or relaxing.
- Focus on deep, slow, purposeful breathing.
- Repeat until you reach a relaxed state.
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” section below 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?
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.
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 Michael Thorpy, director of the Sleep-Wake Disorders Center at Montefiore Medical Center in Bronx, N.Y.
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.
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Our trained specialists are here to provide one-on-one support for every part of your journey. Send a message below or call us at 1-833-ASK-MDA1 (1-833-275-6321). If you live outside the U.S., we may be able to connect you to muscular dystrophy groups in your area, but MDA services are only available in the U.S.