Coping with Fatigue
Fatigue has been described as an “overwhelming sense of tiredness.” Up to 80 percent of people with MS experience the disabling effects of fatigue. This overwhelming tiredness could occur any time in the course of MS, and it has not been shown to be related to measures of disability like the EDSS (Expanded Disability Status Scale). Many people with MS find that fatigue increases as the day goes on, and worsens with a rise in body temperature, which might be caused by hot and humid weather.
Fatigue can be difficult for family members and friends to understand, because it is invisible to others. If fatigue is poorly understood, a person with MS who is experiencing fatigue might be characterized as “lazy.” Educating family, friends, and partners about MS fatigue is very important.
Many people with MS find that fatigue limits their enjoyment and participation in many activities. Fatigue can make performing tasks on the job or at home difficult. Although we do not know at this time what causes fatigue in MS, a number of influences on fatigue have been identified. In addition to environmental heat and cold, these include poor sleep, poor diet, lack of exercise, untreated comorbidities such as infection or depression, and sedating medications.For example, sleep problems are very common in people with MS. Bladder problems, limb movements, poor sleep habits, and depression, are among the many issues that can interfere with getting a restful sleep. Sleep difficulties can contribute greatly to fatigue, and may likely be a contributor to depression as well.
People who are depressed but do not have MS also frequently experience fatigue, and fatigue is one of the symptoms used to diagnose depression. For some, MS fatigue may be related to undiagnosed depression. As noted later in this section, medication that helps depression can also also helpful for fatigue. Other common symptoms of depression are low mood, reduced interest, reduction in the enjoyment of activities that are usually enjoyable, a feeling of hopelessness, and irritability. If you feel that you might be experiencing depression, discussing this with your physician is important. Treating depression may help with fatigue.
With regard to medications, those taken to treat other problems can contribute to fatigue. Some labels on pill bottles say, “May cause drowsiness” or “Do not operate heavy machinery while taking this medication.” These warnings indicate that the medicine is sedating, i.e., it can make you tired. Medications that are used to treat bladder dysfunction, spacticity, and pain can often cause fatigue in MS patients. If this is the case and you are experiencing fatigue, a good place to begin is to review all of your medications with your physician.
People with MS who experience fatigue often feel as though their “batteries have run low” after doing some of their daily activities. A brief rest often serves to recharge the batteries, so it’s possible to finish the task. Planning one’s activities can help, such as trying not to go up and down the stairs more often than necessary, and other types of energy conservation can help.
One of the consequences of reduced activity and movement is deconditioning. It is not advisable for a person with MS to rest more than necessary. In fact, while a person with MS may feel very tired after exercise, exercise is one of the best ways to build endurance and reduce fatigue.
Scheduling and planning ahead can be very helpful with saving energy. Listing activities in their order of importance enables a person to see clearly what needs to done first and what can wait until another day – should all energy be used up before reaching the end of the list.
Those with limited energy can learn to accept that not everything will necessarily be completed when and how one prefers them to be done. In most cases, an unfinished job or activity will still be there the next day. By waiting, more energy and enjoyment will be found in accomplishing the task at a later time.
Scheduling sufficient periods for rest and alternating them with periods of physical exertion can be helpful, to avoid becoming too tired too quickly. Should you take on a project that is too much to handle at one time, divide it into smaller parts and schedule things accordingly. If this is not possible, you may want to have someone lend a hand to accomplish the task and avoid overexertion.
Efficiency and energy-saving techniques are very useful in combating fatigue while tackling household duties. Whenever possible – such as when cooking or cleaning – supplies should be arranged in advance so you may be sitting for most of the activity.
For instance, collecting all the ingredients at one time for a recipe enables the cook to prepare the food while sitting, using minimal effort. The same is true for cleaning, keeping supplies in one carrier and putting them in a safe place near the site of the next job.
Enough cannot be said about good planning. With respect to meals, selecting menus in advance with easy recipes can save both time and money. Before shopping for food, a list of all necessary ingredients for the week’s meals may be written.
Becoming familiar with the local store and the aisles where individual items are located, can assist with saving energy as well. Better yet, if available and affordable, a food order can be delivered. Whenever possible, double portions of a meal may be prepared and the leftovers frozen for another day. This provides extra meals that require little time to prepare. Selecting easier methods of preparation, such as baking instead of frying, or using a microwave or crock pot, can really help to reduce the workload as well.
If the washer and dryer are not convenient to other rooms in your home, you can bring along things to do so you may sit nearby until the clothes are finished. Washing only one or two loads of laundry daily will spread them over the full week. This is far less stressful than doing several loads over the course of one day. Quickly removing clothes from the dryer and immediately folding or hanging them will help to keep clothes from wrinkling. When ironing is necessary, the clothes and board can be arranged so the ironing may be done while sitting.
Frequently used items may be organized and hung or stored in easy-to-reach places, using pegboards, sliding drawers, Lazy Susans, and lightweight storage boxes. Trays and wheeled carts are indispensable for transporting food, dishes, laundry, and other bulky or heavy things around the house. When something heavy needs to be moved (without a tray or cart), sliding the item versus carrying it will save energy. If lifting a heavy object cannot be avoided, keep your back straight, stand with feet apart, and try to avoid straining muscles.
Another way to protect your back is to use chairs that provide support. When applicable, check that these are in the proper position with the desk, table, or countertop. If you have a traditional landline phone, using a shoulder-phone device (a plastic piece that sits between the phone receiver and the shoulder) helps to avoid neck strain while talking on the phone. Most phones now have a speakerphone option, which is especially useful if upper limbs are weak. Another good option is to use a lightweight headset or Bluetooth earpiece when on longer calls.
Planning also applies to personal tasks. When bathing, use a grab bar and have supplies and a tub seat in place (or within easy reach). This will help you to save energy. Clothing may be set out the night before it is needed. When dressing the following morning, clothes should go on the weak side first. When undressing, begin with the strong side.
If caring for a baby, working above the waist level to bathe, change, and dress the infant will be less strenuous. With toddlers, if they can do so safely, letting them stand on a stool or chair for dressing or washing reduces physical strain. Disposable diapers require the least amount of work, while Velcro® or other fasteners on clothes are easier to manage than buttons. These types of fasteners also work well on clothing for individuals with limited movement or energy.
Most energy-saving techniques are little more than common sense and you might be surprised at how much physical strength is conserved by simply using these strategies. During all activities, try to have good light and ventilation so valuable energy is not spent straining to see clearly or taking a fresh breath. Spreading out activities while taking care not to do tiring tasks on consecutive days will also prove to be beneficial.
Relieving Fatigue through Cooling
Research has shown that nerves with damaged myelin are sensitive to changes in temperature. A rise in temperature may cause nerve conduction to be less efficient, whereas a reduction in temperature may allow more signals to be transmitted across a damaged nerve.
The idea of cooling people with MS to alleviate symptoms has been researched and practiced for many years, but practical methods of cooling an individual had not been perfected until the 1990s. At this time, MSAA and NASA joined forces to develop and test a “cool suit.”
Cooling someone too quickly – such as taking cold baths or sitting close to the air conditioner – can cause shivering and vasoconstriction. This reaction does not help to alleviate MS symptoms. By slowly cooling down the body, an individual with MS may experience improvement in areas of physical performance, cognitive processing, and motor function. Cooling also significantly reduces fatigue, helping a person with MS perform his or her daily activities.
Controlled cooling is now achieved through passive cooling garments. These are portable and allow the wearer to enjoy symptom relief indoors or out. Passive cooling garments, such as a vest and wraps for the neck, wrists, or ankles, use ice or gel packs to give people with MS immediate and simple relief from heat and certain MS symptoms. Some passive garments are dampened and chilled before use.
Cooling often provides temporary relief from fatigue and heat intolerance, as well as other MS symptoms. Cooling vests and accessory kits may be available through MSAA (limitations apply). Anyone interested in MSAA’s cooling program may visit mymsaa.org/msaa-help/cooling or call (800) 532-7667.
Medications for Fatigue
A number of drugs have been used effectively to manage fatigue. Many of them were first developed to treat other disorders such as alertness or depression. It should be noted that while these medications are used quite often with people with MS, they are not specifically FDA-approved for the treatment of multiple sclerosis.
- Provigil® (modafinil)
This is an oral medication that should be taken early in the day to minimize sleep disturbances. This drug promotes wakefulness, and was originally developed to treat narcolepsy, a neurologic condition associated with uncontrollable daytime sleepiness.
- Nuvigil® (armodafinil)
This medication is a drug that is similar to Provigil and is also sometimes prescribed for the treatment of MS fatigue.
This generic medication was previously available as Symmetrel®. This is an oral medication that should be taken early in the day to minimize sleep disturbances. Amantadine is an antiviral medication used to prevent or treat influenza; it has also been used in Parkinson’s disease. Its mechanism for relieving fatigue in some individuals with MS is unknown, although it may increase levels of the neurotransmitter dopamine in the brain.
(methylphenidate) This is an oral medication that is usually taken 30 to 45 minutes before eating – or as your physician directs. Because it may cause difficulty sleeping, it is recommended that you take your last dose before 6:00 pm. Ritalin was originally developed as a treatment for attention deficit disorder (ADD), and has also been used to manage narcolepsy.
- Dexedrine® (dextroamphetamine)
This is an oral medication that has been used to improve wakefulness, boost energy, and decrease fatigue and appetite.
Some people with MS find that caffeine, found in coffee, tea, or caffeinated soda, in moderation, can be helpful in managing fatigue. Unfortunately, caffeine is an irritant to the bladder, and can exacerbate urgency and frequency. Individuals should speak with their doctor about their intake of these beverages, to be sure they are not exceeding levels of caffeine that are appropriate for them.
The following medications, among others, are prescribed for depression. These have been found to help lessen fatigue in certain individuals. Antidepressants may need to be taken for several weeks before seeing an effect.
- Selective Serotonin Reuptake Inhibitors (SSRIs) including Zoloft® (sertraline), Paxil® (paroxetine), and Prozac® (fluoxetine).
- Wellbutrin® (bupropion) is an NDRI antidepressant (norepinephrine-dopamine reuptake inhibitor) and is one of the most energizing and most effective of the non-SSRI antidepressants against fatigue.
David Rintell, EdD states, “The bottom line about fatigue is this: It is common and disabling. It can occur any time in the course of MS, and does not appear to be related to disability or lesion load on the MRI. Although there are theories about the cause of fatigue, we do not know what causes MS fatigue. We do know that much of fatigue can be accounted for by depression and sleep problems.”
Please note that stimulants and amphetamines are sometimes used for fatigue, and they can be helpful, but risks are involved with certain drugs. These should only be used when other treatments are not successful, and such drugs are prescribed cautiously.
Reviewed and edited by David Rintell, EdD,
Psychologist, Partners MS Center and Partners
Pediatric MS Center, Boston, Massachusetts