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The new immune system medications provide true disease man-agement for the first time. They clearly are not for everyone withMS and must be selected and used with expert advice. The back-bone to MS management has been and continues to be the man-agement of symptoms. Everyone with MS should be aware of themany ways that the symptoms of MS can be managed, with the goalof improved quality of life.
Symptoms in MS may be divided into those that are caused
directly by demyelination within the brain and spinal cord and thosethat are not. Symptoms that are caused by the disease itself arecalled primary
symptoms. If you lose myelin in the part of the brainor spinal cord that influences strength, you will develop weakness;if you lose myelin in the part that controls coordination, you willbecome uncoordinated; and if you lose myelin in the part that con-
trols sensation, you will develop numbness, pain, burning, or itch-ing. It is quite simple to understand that the number of combina-tions is endless. That is why no two people with MS are exactly alike.
those that are caused directly by demyeli-
People who have primary symptoms sometimes also suffer
from problems that are only indirectly caused by the disease; theseare called secondary
symptoms. For example, some people who areweak and stiff develop decreased movement at the joints, which arecalled contractures, and immobility can lead to osteoporosis or skinbreakdown.
Chronic disease may lead to changes in how one looks at life and
tackles life’s stresses. It may lead to depression, frustration, or voca-tional and marital problems. These are called tertiary
Thus, to really tackle MS, the disease process should be modi-
fied whenever it is possible to do so; the symptoms of the diseaseshould be managed to allow better function; and the person withthe disease should be helped to improve his or her quality of life.
To those who do not have MS, it may come as a surprise that fatigueis the most disabling symptom of MS. For those who have MS, thisis not at all surprising. Part of the reason that fatigue is so commonand potentially disabling relates to the fact that many differentkinds of fatigue are experienced by people with MS, and it is possi-ble to have none or all of the forms at the same time.
Obviously, MS does not protect you from the normal fatigue
that anyone else may experience. However, a person with MS some-times may have a “short-circuiting” type of fatigue. This occurswhen a limb has weakness due to demyelination. If it is fatigued,the limb exhibits increased weakness due to demyelination. Thelimb will recover when the arm or leg is rested, but it may be both-ersome when activities require its ongoing use. Repeatedly askingthe demyelinated nerve to perform when it is repeatedly short-cir-cuiting causes fatigue. The judicious use of aerobic exercise (seeChapter 20) may help build endurance, if not strength, and thusmay decease this form of fatigue. However overexercising withweights increases both fatigue and weakness, so a careful balancemust be sought.
Management strategies include the appropriate use of exercise
and rest, with the understanding that “no pain, no gain” is simply
wrong and that rest should come before short-circuiting fatiguebecomes significant.
If a person does not remain active, muscles atrophy and decon-
occurs. This is another source of fatigue. Maintainingmobility is essential! The appropriate management strategy for thistype of fatigue is exercise and maintaining of mobility. Depression(see also Chapter 22) may be associated with MS and may cause sig-nificant fatigue. This may result from not eating or sleeping well, orit may be associated with a general feeling of depression. It is essen-tial to recognize that this fatigue is related to depression. It shouldbe managed by aggressively treating the depression with medica-tion and counseling.
The most common fatigue seen in MS is called lassitude
. It is
sometimes referred to as “MS fatigue.” Lassitude is characterizedby an overwhelming sleepiness that may come on abruptly andseverely at any time of day. This form of fatigue likely is bio-chemical in origin, and medications that modify brain chemistrymay be helpful. Amantidine (Symmetrel®) is an example of a med-ication that affects the nervous system and also has antiviraleffects. The antidepressants, including fluoxetine (Prozac®),paroxetine (Paxil®), and sertraline (Zoloft®), may be useful for thistype of fatigue, even in those who are not depressed. These med-ications may not be interchangeable, with one working better forone person and a different one for another. Lassitude is a bother-some form of fatigue because a person may look well and yet notbe able to function. A new, novel medication, modafinil (Provigil®)has been shown to decrease MS fatigue and has become a com-monly used treatment for this problem. Its mode of action is notclear but it does work by altering the brain’s neurochemistry. Thisis becoming the most popular anti-fatigue drug In MS. It has apotential side effect of agitation, which should be reported to yourphysician immediately.
Stimulant medications sometimes may be necessary. These
include pemoline (Cylert®), methylphenidate (Ritalin®), and occa-sionally dextroamphetamine (Dexedrine®). These medications
should be used with caution because they may be habit-formingand may lead to agitation. A well-timed nap sometimes is mosthelpful in managing lassitude. The management strategy for thisform of fatigue includes rest and the use of antidepressant andstimulant medications.
Even though fatigue is common and potentially disabling, it is
clear that people who have MS are not fragile. Although rest may behelpful, the idea that fatigue leads to increased demyelination hasnot been proven. The idea that MS progression occurs if a persondoes not rest a great deal is also without merit. You need to listen toyour body, but there always are times when a little extra push isnecessary, and this is not a cause for fear.
In summary, the approach to fatigue in MS involves identifying
the type of fatigue and treating it specifically. Removing any con-tributing causes is essential. These include infections, stress, andoverutilization of some medications. While medications can help,rehabilitative techniques can also be valuable.
Occupational therapists may be helpful in teaching the concept
of energy conservation to those who have moderate or severefatigue of differing varieties. Efficiency in performing activities ofdaily living, which include dressing, grooming, toileting, eating, andso forth, may increase the energy available for other activities.
Balance activity with rest and learn to allow time to restwhen planning a day’s activities. Rest means doing nothingat all.
There is a fine line between pushing to fatigue andstopping before it sets in. Rest improves overall enduranceand leaves strength for enjoyable activities.
Plan ahead. Make a daily or weekly schedule of activities tobe done and spread heavy and light tasks throughout theday.
Pace activity. Rest before you become exhausted. Takingtime out for five- or ten-minute rest periods during an activ-
ity may be difficult at first, but it may significantly increaseoverall functional endurance.
Learn “activity tolerance.” See if a given activity can be bro-ken down into a series of smaller tasks or if others can assistin its performance.
Set priorities. Focus on items that are priorities or that mustbe done, and learn to let go of any guilt that may be associ-ated with not finishing tasks as the result of fatigue.
MINIMIZING FATIGUE BY CONSERVING ENERGYThe following are some specific suggestions for common tasks andgroups of tasks that most of us need to do regularly. They takeadvantage of the principles described previously and are designedto conserve energy expenditure.
Store items that are used most often on shelves or in areaswhere they are within easy reach, to minimize the need tostretch and bend.
Keep pots and pans near the stove, dishes and glasses nearthe sink or eating area.
Keep heavy appliances such as toasters and blenders in apermanent place on countertops.
Have various working levels in the kitchen area to accom-modate different tasks, and evaluate working heights tomaintain good posture and prevent fatigue. Sit wheneverpossible while preparing meals or washing dishes, and usea large stool with casters that roll to eliminate at least somewalking. When standing for a prolonged period, ease ten-sion in your back by keeping one foot on a step stool or anopened lower drawer.
Use wheeled utility carts or trays to transport numerousand/or heavy items.
Hang utensils on pegboards to provide easier accessibility.
Have vertical partitions placed inside storage spaces to permitupright stacking of pots and pans, lids, and baking equipment.
If storage cabinets are deep and hard to reach, use lazySusans or sliding drawers to bring supplies and utensilswithin easy reach.
Use cookware designed for oven-to-table use to eliminatethe need for extra serving pieces. Use paper towels, plasticwrap, and aluminum foil to minimize cleanup.
Have good lighting and ventilation in the cooking area.
Gather items needed to prepare a meal, and then sit whiledoing the actual food preparation.
Select foods that require minimal preparation such as dehy-drated, frozen, canned, or packaged mixes.
Use a cutting board with nails to hold items that are being cut.
Prepare double recipes, and freeze half for later use.
Use electrical appliances rather than manual ones whenev-er possible, including food processors, mixers, blenders, andcan openers.
Use a microwave oven or crockpot to cut down on cookingand cleanup time.
Bake rather than fry whenever possible.
Bake cookies as sheets of squares instead of using shapedcutters.
Slide heavy items along the countertop rather than liftingthem.
Use a damp dishcloth or a sticky substance such as Dycem™to keep a pot or bowl in place while stirring.
Line baking pans with foil to minimize cleanup, and soakpots and pans to eliminate scrubbing.
Spread tasks out over a period of time; do one main job eachday rather than an entire week’s cleaning at one time.
Alternate heavy cleaning tasks with light ones, and eitherget help or break major heavy duty cleaning tasks into sev-eral steps.
Use a pail or basket to transport cleaning supplies from roomto room to save on the number of trips back and forth.
Use adaptive equipment, such as extended handles fordusters or brushes, to avoid bending.
Wash one or two loads as they accumulate rather thandoing multiple loads less often.
Collect clothes in one place, and transfer them to the laun-dry area in a wheeled cart if possible.
If the laundry area is in a basement, plan to remain thereuntil the laundry is done, and have a place to relax whileyou are waiting.
If a clothesline is used, have it hung at shoulder height, andplace the laundry basket on a chair while hanging laundry.
Hang clothes promptly after they are dry to minimize iron-ing.
Buy clothes that require minimal maintenance.
Plan menus before going to the store, and take a shoppinglist with you.
Use the same grocery store on a regular basis, and learnwhere various items are located for easier shopping; using aphotocopied master grocery list organized to match thestore layout is a simple way to minimize time and energy.
Use home delivery whenever possible.
Put beds on rollers if they must be moved or keep themaway from walls.
Make one side of a bed completely, then finish the otherside, to minimize the amount of walking involved.
Organize closets for easy access by making top shelves andclothing rods low enough to reach without straining.
Use lightweight storage boxes, hanging zippered clothesbags, and plastic boxes for items that are needed daily.
Alternate tasks and incorporate short rest periods to avoidfatigue.
Keep your garden small and easy to manage.
Use adaptive equipment, such as handles with extensions,to minimize bending.
Always use your leg and arm muscles rather than your backmuscles when lifting an infant or child.
Wash, change, and dress an infant at counter height.
Kneel while washing a child in a bathtub.
Adapt the fasteners on a child’s clothing for easier dressing.
Have a child stand on a footstool while helping him or herdress or wash.
Arrange your desk and chair heights to facilitate maintain-ing proper posture, which reduces slumping of the shoul-ders and neck flexion.
Use a chair that has good back support.
Arrange your office so that your file cabinets, computer ter-minal, and other equipment are easily accessible.
Use small lazy Susans on the desktop for pens, paper clips,tape, stapler, and so on.
Use a phone device that allows the receiver to rest on yourshoulder and frees your hands during extended conversations.
Lay out clothing for the next day before retiring.
Sit while dressing whenever possible.
When dressing, dress the weaker side first; when undress-ing, undress the strong side first.
Organize shampoo, soaps, and toiletries, and keep themtogether by the bathtub or shower.
Use grab bars to assist in safely getting in and out of thebathtub.
Use a tub bench or stool while showering or bathing.
Always avoid hot water while bathing because it increasesfatigue.
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