Fatigue in MS is extremely common, affecting up to 90 percent of people with the disease, and is described as the worst symptom by almost one-third of people with MS. MS fatigue is not normal fatigue; experts describe it as “deadening.” One person described it as running a marathon in a suit of armor. It can vary from day to day, but it is particularly frustrating when you lack the physical or mental energy to get things done, so it's imperative to address it with your doctor.
The cause of fatigue in MS is not yet fully understood. It differs from ordinary fatigue in the following ways:
It comes on much faster than ordinary fatigue upon exertion, even doing simple activities such as writing or walking.
There is little correlation to the amount of energy expended and the degree of fatigue.
MS fatigue takes longer to resolve than ordinary fatigue.
MS fatigue can cause neurological symptoms to appear.
MS fatigue can be thought of in two ways: primary fatigue and secondary fatigue. Primary fatigue appears to be caused by the disease process itself and is a result of the demyelination in the CNS. Terms such as lassitude fatigue (fatigue experienced during activity), heat intolerance (symptoms brought on by hot weather or raising of the body temperature), and localized fatigue (nerves of individual muscle groups that tire with use) figure in to primary fatigue.
Secondary fatigue refers to the tiredness or weakness that occurs that is not directly related to the disease process, but instead occurs as a result of your symptoms. Sleep disturbances, medications, depression, lack of physical activity, and poor nutrition also come into play.
Your goal should be to identify troublesome symptoms and be proactive about them. If fatigue is making a trip to the mall seem like an insurmountable task, then it needs to be addressed. The overall goal of symptom management is to increase your quality of life.
Fatigue is one of the most underreported symptoms in MS because many people unknowingly accept it as an inevitable and untreatable consequence of having MS. It is important to tell your doctor that you are experiencing fatigue, even when other symptoms seem more obvious.
Getting a Handle on Primary Fatigue
Researchers believe that primary fatigue is caused by poor nerve conduction resulting from the demyelination process. It is not a result of anything you're doing, but occurs because your body is working a whole lot harder to transmit messages between your brain and other parts of your body.
While there are no specific treatments for primary fatigue, there are some medications that may provide some relief. If one medication doesn't seem to work for you, talk to your doctor about trying another. Here are some commonly used medications prescribed for fatigue:
Provigil (modafinil). This drug is usually used to treat narcolepsy (a sleep disorder) but some drug trials found that it also reduced the fatigue associated with MS in some people.
Amantadine. This is an antiviral medication that is also prescribed for fatigue in MS.
Ritalin. This stimulant is often prescribed for people with ADHD, but may also be helpful for people coping with MS fatigue.
Prozac (fluoxetine). This antidepressant has also been found to alleviate fatigue in some people with MS.
Once people learn to identify MS fatigue and realize there are ways to combat it, they are eager to move past this sometimes disabling symptom. Talk to your physician about some of the treatments used for fatigue. It may take some trial and error until you find a medication that works best for you.
Getting a Handle on Secondary Fatigue
Secondary fatigue is primarily caused by your symptoms. If you have muscle weakness in your legs, for example, walking down a long corridor at the airport may tire you out before you even get on the airplane. You'll have to problem-solve to conserve energy, which may mean requesting a wheelchair to get from the check-in counter to the gate. While this may be an uncomfortable solution at first, think of it as an investment in your future and your quality of life. Why feel fatigued when you get to your destination if you could have conserved that energy in the first place? Problem solving takes creativity, but it also takes flexibility.
You may also have to tackle problems with self-image, too, and rethink your ideas about assistive technology (AT), such as wheelchairs, scooters, and canes. These devices exist to make life easier for those who need assistance, and they work wonders for those who are trying to conserve their energy. Don't entertain the idea that you're “giving in.” In reality, you're making a wise choice: you're saving your energy so that you're ready to enjoy and tackle the important things in your life.
Where can I learn more about assistive technology?
Assistive technology (AT) can open doors and break down barriers for people with disabilities and chronic illnesses. To familiarize yourself with the various gadgets available, visit these websites:
Managing your time and energy is essential to getting a handle on fatigue. Developing strategies to offset the effects of fatigue will enable you to participate fully in life. Here's a list of tips to get you started:
Prioritize. Of all the things that compete for your time and attention, choose those that you value most. Agree to expend a lot of your time and energy on those things that top your list, while giving other things less of your time. MS may force you to redefine what is important to you, including yourself.
Strategize. Once you've got a handle on your priorities, you must come up with effective ways to handle the physical and mental tasks associated with them. Creativity is the key here. Once you figure out what you want done, you can strategize on how it gets done. Most of all, be willing to change your strategy if one isn't working for you.
Collaborate. This means brainstorming with others to find ways to make your environment more accessible and organized. Ask your employer to move your office to a more convenient location. Ask family members to help you get your workshop organized. There are thousands of ways to save time and energy; you may be surprised by what sort of ideas you can come up with.
If you'd like to add some energy-saving ideas to your cache, check out the book 300 Tips for Making Life with Multiple Sclerosis Easier, 2nd edition. Author Shelley Peterman peddles some great ideas here, such as meal preparation, ways to improve memory and concentration, grooming tips, and travel ideas.
Other Energy Sappers
There are other causes of MS fatigue, including sleep disturbances, medications, depression, lack of physical activity, and poor nutrition. Figuring out which of these areas you need to focus on can be a little challenging, but tackling each potential cause one at a time can help you figure out which ones are robbing you of energy.
Some of the medications prescribed for MS can cause insomnia, so be sure to go over your meds with your doctor and discuss which ones may be causing the problem. The interferons (Avonex, Betaseron, and Rebif) are known to cause fatigue, especially at the beginning of treatment. Other medications that cause drowsiness include Neurontin (gabapentin, for pain), Valium (diazepam, for spasticity), and antidepressants (for depression). Many other drugs in your MS arsenal can cause drowsiness, so check with your doctor if fatigue continues to be a problem for you. She may suggest changing your medication schedule or switching you to another type of drug.
Studies show that people with insomnia are four times more likely to suffer from depression than those without insomnia. Insomnia is also associated with anxiety and drug and alcohol abuse, along with injury and accidents. It's important to make the correlation between sleep and health and seek help if insomnia lasts longer than a week.
The inability to fall asleep or to stay asleep, called insomnia, is the most common sleep disorder. Many people with multiple sclerosis complain of insomnia or broken sleep patterns. Let's look at the most common causes:
Symptoms. Symptoms such as muscle stiffness, muscle spasms, and frequent urination can interrupt your sleep.
Stress and depression. Tossing and turning all night might be an indication that you're not getting a handle on stress. Depression can also keep people from falling asleep, especially if they have irregular sleep habits, such as sleeping too much during the daytime.
Drugs. Corticosteroids (used to treat relapses) are known to give people an energy boost and sometimes keep them from sleeping, too.
Lack of exercise. Known as deconditioning, a lack of exercise may worsen MS fatigue. Likewise, a regular exercise program may be an excellent, “nondrug” approach to treating MS fatigue.
Nutrition. Poor nutrition can sap you of much-needed energy. Getting the right vitamins and minerals into your body will help you function at your optimal level.
Learning to rethink your activities and routines to cope with MS fatigue is often done by trial and error. The truth is, most people who have fatigue issues figure out for themselves what works best for them — and sometimes they learn the hard way. A good rule of thumb is to pay attention to what your body is telling you. Sometimes a few minutes rest will buy you some energy; other times, calling it a day might be in order.