“Who would have thought that getting dressed in jeans and a shirt (not even socks!) could be a major production, take forever to do, and then you’d have to rest?” ~ Renee, Women Living with Multiple Sclerosis
“Fatigue has been my constant companion. It is a bone-tiring fatigue. A feeling that can send me to bed for the whole day, even after I have slept soundly for 12 hours. I used to be so physically active.” ~ Marybeth, The MS Autobiography Book
If fatigue is wearing you out, you are not alone. In fact, fatigue is the most common and persistent symptom of MS, affecting nearly 80 percent of those with the disease. "In my experience, it’s one of the commonest reasons that people with MS have to stop working," says Dr. Andrew Goodman, director of the MS Clinic at the University of Rochester School of Medicine and Dentistry.
Fatigue manifests itself quite early in the course of the disease, sometimes long before the initial neurological symptoms. Some people have been fighting fatigue since childhood, mistakenly thinking they were just lazy or unmotivated.
THE MANY FACES OF FATIGUE
Fatigue may be persistent but it is certainly not consistent. From one day to the next, or even one hour to the next, it can be impossible to predict what your level of fatigue might be. You may feel energetic for weeks at a time. Then, without warning, find yourself exhausted, barely able to get out of bed.
Normal fatigue is generally caused by overwork or staying out too late, and is easily remedied by a good night’s sleep or a cup of coffee. Everyone, with or without MS, experiences this type of temporary tiredness.
Another type of fatigue, sometimes called short-circuit fatigue, can develop easily in individuals with MS. Working out with weights, extensive walking, or other repetitive motion may fatigue your muscles more rapidly, making your body feel weak and tired. Rest and recuperation usually resolves this type of fatigue, although it may take a day or two to recover completely.
Fatigue caused by depression can be a bit more difficult to identify. This is because depression can produce fatigue, but fatigue can also produce depression. If you are feeling listless, sad or apathetic to those things that usually interest you, you could be experiencing depression-induced fatigue. The good news is that both can be treated successfully with antidepressant medications.
The most prevalent type of fatigue in people with MS is sometimes called lassitude. Almost like a spell has been cast upon you, lassitude can sneak into your life and persist for days or weeks at a time. Simple daily chores can seem like monumental tasks. As quickly as lassitude appears, however, it can disappear, leaving in its wake the mild, pervasive fatigue that seems quite manageable in comparison.
Many things can trigger fatigue. It can be a side effect of medication. It can be brought on by an extreme change in temperature. Chronic or intermittent pain, inflammation, or urinary infections can all be contributing factors. Recognizing the specific cause of your fatigue can be an important first step in fighting it effectively.
PHARMACOLOGICAL WEAPONS
Some antidepressant drugs provide a stimulant effect, particularly the selective serotonin release inhibitors (SSRIs). These include Prozac, Paxil, Zoloft and Effexor. Besides alleviating depression, these drugs simultaneously fight fatigue as well.
Other pharmacological options include Clyert (pemoline), which is a central nervous system stimulant generally used to treat attention deficits in hyperactive children. Symmetrel (amantadine), typically used to treat Parkinson’s disease, not only helps with fatigue, but coincidentally improves MS tremor as well. Ritalin has been used on occasion, although it is a strong stimulant with the potential for many side effects. Provigil (modafinil), a drug used in treating narcolepsy, has also shown promise as a fatigue-fighting agent.
Unfortunately, some of these drugs carry the potential for abuse or dependence. They also may produce side effects, such as taste perversion, headaches, insomnia, blurred vision, and livedo reticularis, a harmless, blotchy skin condition.
Vitamins A, C, E, and B complex are said to be energy producing, but these claims have not been clinically substantiated. Nevertheless, potassium gluconate supplements, vitamin B12 injections, and zinc have all been used with varying degrees of success.
If medication is not a viable option for you at this time, don’t despair. There are other ways to fight fatigue and make the most of the energy you do have. Every individual with MS is unique and no two people will respond to a treatment in the same way. Antidepressants may work well for one person, whereas behavior modification may work well for another.
BEHAVIORAL WEAPONS
Conduct an energy audit. Ask yourself:
Keep a journal and record your daily activities along with the times that you do them. This will enable you to recognize your patterns of fatigue more readily. Monitor these patterns and plan your day accordingly.
Next, evaluate your activities, eliminating all unnecessary expenditures of energy. Get organized. Familiarize yourself with the location of things you use most often and keep them within easy reach. Divide large daunting jobs, like cleaning the house, into small, manageable tasks.
Plan ahead in the kitchen. When you’re having a good day, prepare a casserole. Freeze it in several smaller portions. Then, when your fatigue flares up, simply open the freezer where a nutritious meal awaits. Standing uses more energy than sitting, so sit on a stool to chop potatoes. Or, better yet, have baked potatoes. Use paper cups and plates, eliminating clean up entirely. Spread a blanket on the floor and turn dinner into a picnic. Your kids will love it. And you won’t even have to get up to take a nap after dinner!
Switch to an electric toothbrush or an electric pencil sharpener, reserving that energy for other things. If you suffer from urinary frequency, keep a portable commode at your bedside or at least make sure your bedroom is near the bathroom.
Exercise is another effective weapon in the fight against fatigue. According to the National Center on Physical Activity and Disability, "A study conducted by researchers at the University of Utah demonstrated the benefits of exercise for people with MS. Those patients who participated in an aerobic exercise program had better cardiovascular fitness, better bladder and bowel function, less fatigue and depression, a more positive attitude and increased participation in social activities."
So, get creative. Managing fatigue doesn’t have to be a big yawn. "If walking to the park with a child, for example, make a game out of stopping at every block or intersection and singing a song, resting a moment, then continuing on," suggest David L. Carroll and Jon Dudley Dorman, M.D., in their book, Living Well with MS.
You’ve probably heard the expression Life is short. Eat dessert first. The same principle can apply to managing fatigue. Tend to top priority tasks first. Everything else can wait.
(Last reviewed 7/2009)