Fatigue — a feeling of tiredness, exhaustion or lack of energy — is a common condition in people with ALS. Those who experience it may move and speak more slowly than their remaining muscle function would seem to allow, and may curtail their activities. For some, it is the major reason contributing to the decision to leave work.
Fatigue is a symptom of a disorder, not a disease in itself. Someone who is fatigued also may complain of problems with focus and concentration and lack of desire to participate in decision-making about daily activities or appearance. Other associated problems include avoidance of social activities and, of course, excessive daytime sleepiness. When fatigue causes people to do less, see people less often and be less engaged in everyday activities, low mood may result.
If this particular unwelcome visitor has put down stakes in your life, know there are ways to send it packing.
Fatigue as the result of ...?
Fatigue commonly results from ALS or its complications, such as respiratory insufficiency or poor nutrition. However, it can also be a consequence of any number of disorders unrelated to the disease, including depression, heart disease, low levels of thyroid hormones or testosterone, and anemia disorders which are often treatable.
Some medications (including riluzole or Rilutek), or medication combinations, also may cause fatigue.
Factors that can exacerbate the condition include insomnia, stress and anxiety; feelings of loss, hopelessness and grief; weight loss; lack of mobility; and physical or emotional pain.
Bottom line: first talk with your doctor about your fatigue. “You want to rule out other possible causes of fatigue before you treat it,” says Judith Rabkin, professor of clinical psychiatry at Columbia University in New York and a member of the multidisciplinary team at the Eleanor and Lou Gehrig MDA/ALS Research Center also at Columbia University Medical School. “Otherwise, you’re treating, and possibly covering up, the manifestation of another problem.”
If someone still experiences fatigue after any obvious causes are addressed, then, Rabkin says, other measures can be employed.
Try simple solutions first
The first line of defense against fatigue includes adopting energy-conservation strategies.
- Avoid rushing. Plan work, pace yourself and schedule rest periods; alternate heavy and light tasks throughout the day; set priorities and eliminate unnecessary tasks.
- Avoid unnecessary motion. Sit instead of standing for any task that may last longer than five minutes; avoid holding or lifting heavy objects by sliding them or using a wheeled cart; avoid reaching and bending by rearranging your work area; take shortcuts; apply for a disabled parking permit early in the disease.
- Arrange your work center. Place supplies and equipment within easy reach; avoid unnecessary clutter; use labor-saving equipment, such as a food processor for chopping and cutting.
- Use proper working conditions. Take advantage of assistive technology whenever possible; adjust work areas to a comfortable height; ensure adequate ventilation and good lighting; work in a relaxed manner; wear comfortable clothing.
- Get help with cleaning and housework. Use cleaning products that don’t require scrubbing; employ an assistant or housekeeper; find help through public service organizations, religious institutions or your local area agency on aging.
- Slow down bathing. Gather all necessary items and place them within easy reach at waist level; sit to undress, bathe, dry and dress; don’t make the water too hot.
It’s vitally important to maintain proper nutrition, in order to prevent weight loss and weakness from inadequate protein and calorie intake. A feeding tube (also called a PEG tube) enables you to meet nutritional requirements and reduce the energy expended in the process of eating. (Note: feeding tubes can be put in place while a person still can eat by mouth, to supplement nutrition and save time and energy.)
Another effective tip: Learn to ask for, and accept, help from others.
(For more suggestions like these, request a copy of the MDA ALS Caregiver’s Guide from your local MDA office, or view it online at the MDA website.
If push comes to shove
Should these tactics not be enough to bid fatigue adieu, consider talking with your physician about medication.
The drug modafinil, marketed under the brand name Provigil, is approved by the U.S. Food and Drug Administration (FDA) for the treatment of narcolepsy, shift-work-related sleep disorder and excessive daytime sleepiness associated with obstructive sleep apnea.
In a recent study of the drug in people with ALS, investigators found modafinil reduced fatigue and daytime sleepiness and “may be a promising intervention” for this issue. (See “Modafinil may help combat fatigue in ALS.”) An earlier study showed modafinil was well tolerated by ALS patients and improved measures of daytime sleepiness.
Although not FDA-approved for ALS-related fatigue, a number of physicians do prescribe modafinil off-label for their patients with ALS.
Physical medicine and rehabilitation specialist Greg Carter, co-director of the MDA/ALS Center at the University of Washington in Seattle, says he offers it to all of his ALS patients and that he’s seen it make a difference in their lives.
“The results are subtle,” Carter says, and often “the dose may have to be adjusted for several days until they get the desired effect.”
Carter notes that the drug doesn’t work for everyone, but has a positive response of around 80 percent.
Aside from the fact that it’s a “wake-promoting” agent, little is known about how modafinil staves off fatigue, but it has so far proven safe, and side effects tend to be mild and similar to those you might get from drinking too many caffeinated beverages.
“You may feel hyper, you have a headache or nausea, and you might feel irritable or nervous,” says Columbia University’s Rabkin, who also was an investigator in the most recent study on modafinil in ALS. “It’s a short-acting drug — if you don’t take it, or lower the dose, any side effects will be gone by the next day.”
Rabkin notes also, “It doesn’t cause dependence, doesn’t cause euphoria, and there is no ‘crash’ if people stop using it. In fact, many people take it on busy days only.”
Apart from those with treatable causes of daytime fatigue like insomnia or low thyroid, Rabkin says that typically the major “rule-outs” — people who shouldn’t take modafinil — are those with heart disease or untreated high blood pressure.
Pick and choose
The strategy, or combination of strategies, employed to banish fatigue is up to you. The only option that shouldn’t be considered is putting up with it.
“It’s not the sort of thing that’s urgent, but it affects life,” Rabkin says, noting that her patients with ALS often come in worried about leg braces, speaking and swallowing, but don’t mention their fatigue.
However, says Rabkin, “fatigue is a quality of life issue. It shouldn’t be ignored.”