MS fatigue, as describedby one MS supportgroup participant, is thefeeling that even sittingup in bed reading is just

too strenuous. “You want to do somethingacross the room but you can’t get your bodyto move,” he explained. “You negotiate withyourself: how many steps will I have to taketo get there?”

For those who have never had the experi-ence, the unique brand of fatigue that oftenaccompanies MS may be hard to fathom.Those affected commonly describe it as anoverwhelming sense of exhaustion, not re-lieved by resting or by getting more sleep atnight.

More than 90% of individuals with MS ex-perience fatigue that significantly impairstheir quality of life.Yet, many with MS alsohave felt that their fatigue has been down-played in the overall management of theircondition.

This attitude is changing as the importanceof fatigue in MS is recognized and as newtreatment options become available. For ex-ample, the MS Council for Clinical PracticeGuidelines—the governing body that estab-lishes MS treatment protocols—developed areport to guide clinicians in managing MS-

related fatigue. More educational programsare being developed for health professionalsinvolved in MS care to help them properlydiagnose and manage MS-related fatigue.

How far-reaching is the impact of MS-related fatigue? More than 50% of those withMS who experience it report fatigue as theirmost disabling symptom. In addition to se-verely limiting physical functioning and the

ability to perform activities of daily living—such as going to work or doing householdchores—MS-related fatigue also may affectcognitive functioning and the ability to emo-tionally cope with the disease.

“Fatigue really changes your view of theworld,” explains Henry Shapiro, MD, a de-velopmental pediatrician whose condition

1

Taking FatigueSeriously: New Focuson This MS SymptomFirst in a three-part article series

Taking FatigueSeriously: New Focuson This MS SymptomFirst in a three-part article series

©M

arc

Rom

anel

li/G

etty

Imag

es

“You want to do some-thing across the roombut your body won’tmove.You negotiatewith yourself: howmany steps will I haveto take to get there?”

was recently diagnosed as MS.“Even small things like a slightincline in the sidewalk or a longer walk to the car become ex-tra efforts that sap your energy.You have to constantly weighwhether an activity is going to be worth the exertion orwhether you should save your energy for something else.”

Fortunately, fatigue is no longer a fact of life with whichpeople with MS simply must cope. Effective methods of treat-ment are available, including drug therapy and self-manage-ment strategies. By working in partnership with their healthcare providers, many people with MS-related fatigue are ableto achieve significant symptom relief.

The initial step toward fighting fatigue is to assess its im-pact on daily life.A widely used method is the Fatigue SeverityScale (FSS), shown on page 7. Using the scale, individuals ratehow well each statement describes them on a scale of 1 to7, with 1 representing “disagree” and 7 representing “agree.”If the total score is 36 or more, it is recommended that theperson seek advice from a health care provider about man-aging fatigue.

It is important that the FSS not be used to self-diagnose MS-related fatigue. Its purpose is to give the clinician a perspec-tive on how someone is affected by fatigue. Other possiblecauses of fatigue, such as disrupted sleep, stress, or depres-sion, may need to be considered or ruled out.

Although the underlying causes of MS-related fatigue arepoorly understood, it has become clear that this symptom re-sponds to some medications. In 2001, the Working Group forPharmacologic Therapy in MS-Related Fatigue established drug treatment guidelines based on those developed by theMS Council for Clinical Practice Guidelines.

The Working Group recommended amantadine (Sym-metrel®), an antiviral drug, as first-line therapy for those withMS who experience mild fatigue (an FSS score of less than40).

The Working Group also recommended the use of modafinil (Provigil®) as first-line therapy in the treatmentof moderate-to-severe MS-related fatigue (FSS score greaterthan or equal to 40). Modafinil is the only drug therapy usedfor MS fatigue that has been shown to produce a significantchange in FSS score when compared with placebo.

Acknowledging MS-related fatigue as a serious symptomthat requires medical attention is the first step in obtainingrelief. Increased recognition of this debilitating symptomshould help reduce its undermanagement. 8

2

The under-lying causesof MS-relat-ed fatigueare poorlyunderstoodbut it’s clearthat thesesymptomsrespond tocertainmedications.

BY BONNIE DARVES

Most people think theyknow what fatigue isbut for those with MS,the concept goes wellbeyond the “normal”

definition of tired or listless.MS-related fatigue is now being recognized

as a serious aspect of the disease that is dis-tinct from fatigue from other causes.However, this distinction is rarely cut-and-dried. People with MS may have fatigue thatis caused primarily by the disease but theirsymptoms might also be caused by certainmedications, by depression, or by lack ofsleep.

“It’s very important to identify as manytreatable causes as possible before devisinga specific plan for managing MS-related fa-tigue,” explains Richard Ransohoff, MD, aneurologist at the Mellen Center for MultipleSclerosis Research and Treatment at theCleveland Clinic in Ohio.

For example, conditions such as anemia,thyroid disorders, or chronic sinus infectionsmay cause or worsen fatigue. Sleep apnea (in-termittent breathing interruptions resultingin nonrestorative sleep) can also exacerbatefatigue. Medications such as antihistamines,

anti-inflammatory drugs, antihypertensiveand heart medications, muscle relaxants, anddiabetes therapies may cause or aggravatefatigue.

According to Dr. Ransohoff, some fatigue inMS can be explained by the following causes:

Neuromuscular fatigue occurs when theleg muscles begin to tire or weaken afterwalking a short distance, which may cause

the person to limp.At longer distances, neu-romuscular fatigue may make a person feellike he or she might collapse.

Substitution fatigue results when strongermuscles work harder to compensate forweaker muscles.This imbalance in muscle us-age often leads to strain in the overused mus-cles, eventually causing fatigue.

3

MS-Related Fatigue:It’s More Than Just

Feeling Worn OutSecond in a three-part article series

MS-Related Fatigue:It’s More Than Just

Feeling Worn OutSecond in a three-part article series

©To

nyA

nder

son/

Get

tyIm

ages

MS-related fatigue isrecognized as a seriousaspect of the disease,distinct from fatigueby other causes—butthis distinction israrely cut-and-dried.

PrimaryMS-relatedfatigue isthe formthat is mostlikely torespond tomedicationssuch asamantadineandmodafinil.

Cardiovascular fatigue,caused by inefficient heartand lung function, is oftendue to lack of exercise. Somepeople with MS avoid exer-cise because they fear it willtire them but poor physicalfitness may actually worsenfatigue in the long run.

About 30% of those withMS who experience fatiguehave primary MS-related fa-tigue, which cannot be linkedto any explainable cause, saysDr. Ransohoff. “Theoriesabout primary MS-related fatigue are many but facts areharder to come by,” he says.“The underlying cause mightbe related to the inflammato-ry process in the central nerv-ous system.” Primary MS-related fatigue is the form thatis most likely to respond tomedications such as amanta-dine or modafinil, he adds.

MS-related fatigue general-ly occurs daily, rather than in-termittently, and it tends toworsen as the day goes on.Thistype of fatigue is also likely tobe more severe than normalfatigue and often is aggravat-ed by heat and humidity. Inmany people with MS, symp-toms of fatigue also come oneasily or quite suddenly.

Since poor sleep is a lead-ing cause of fatigue, assess-ment often begins with ananalysis of sleep patterns.Some people with MS sleeppoorly because spasms orbladder problems wake them

during the night. Others sleepthrough the night but wakeup feeling as though theyhaven’t rested. In such cases,the clinician might look forother underlying medicalconditions.

Depression, another po-tential cause of fatigue, is un-derstandably prevalent inthose with MS. Defined as amarked loss of energy and in-terest in life, depression usu-ally interferes with sleep andmakes working or exercisingmore difficult. Many peoplewith MS who experience de-pression can be successfullytreated with antidepressantmedications.

In addition, mobility limi-tations in MS—struggling toget around and simply ex-pending more energy thanone would normally—areunderrecognized causes of fatigue,Dr.Ransohoff believes.Identifying mobility problemsand making lifestyle modifi-cations to optimize energy us-age can help many with MS toachieve major improvementsin fatigue symptoms.

Those who believe theymust simply “deal with” theirfatigue are urged to discusstheir symptoms with their cli-nicians, suggests Dr. Ranso-hoff. The Fatigue SeverityScale on page 7 is one way tohelp define the impact of fatigue and to raise this dis-cussion with a health careprofessional. 8

4

BY BONNIE DARVES

For reasons that are not yet un-derstood, MS-related fatigue af-flicts some people far more se-verely than others, regardless ofthe extent of disease progression.

Some people who experience this type of fa-tigue are able to continue working and pur-suing many regular activities, while othersfind it too strenuous to walk across a room.

For David Mowen, owner of a small gift-ware manufacturing firm in Hood River,Oregon, fatigue is the most debilitatingsymptom of his MS—the factor that, in theseven years since his diagnosis, has most af-fected his ability to work.

Like many people with MS, Mr. Mowendoes his best to manage the disabling effectsof fatigue. He naps several times a day andtries to maintain a modest fitness regimen,two strategies that provide some relief. “I’ma can-do person who looks at the glass as halffull, not half empty. So I still try to do thingsI enjoy—it just takes me longer,” he says.

For Lynda Emerson, who was diagnosedwith MS at the age of 22, “fatigue was thefeeling of wanting no stimuli whatsoever—whether it was having the TV on or listen-ing to people talking loudly in a room. It was

really all I could do to just get up, go to work,and then come home and go to sleep,” saysMs. Emerson, who is currently a program co-ordinator for the Greater Washington Chapterof the Multiple Sclerosis Society (MSS).

Fortunately, Ms. Emerson’s neurologist,Craig Smith, MD, at the Swedish RegionalMultiple Sclerosis Center in Seattle, helpedher obtain relief through a two-faceted ap-

proach. He prescribed a medication to ad-dress a preexisting thyroid imbalance, aswell as modafinil (Provigil®), which is astimulant that has proved beneficial fortreating fatigue in MS, Parkinson’s disease,and other neurological conditions. “For me,it was a day-and-night kind of turnaround,”Ms. Emerson says.

5

MS-Related Fatigue and Quality of LifeThird in a three-part article series

MS-Related Fatigue and Quality of LifeThird in a three-part article series

©G

hisl

ain

&M

arie

Dav

idde

Loss

y/G

etty

Imag

es

Some people with thistype of fatigue are ableto continue workingand pursuing regularactivities; others find ittoo strenuous to walkacross a room.

Other approaches that have helped Ms. Emerson manageher fatigue include exercising. After training for severalmonths, she recently participated in a walking marathon inSeattle. She also balances her choice of activities carefully, soan evening spent at a dance club with friends might be fol-lowed by a weekend resting at home.

Tom Holtackers, PT, has fine-tuned his fatigue-managementbalancing act. The 60-year-old physical therapist, who wasdiagnosed with MS in 1980, works in rehabilitation and pa-tient education at the Mayo Clinic in Rochester, Minnesota.“The main thing I do is try to ‘read’ my body. If I becometoo fatigued, I rest—whether it’s in the middle of the day orin between working with patients,” he says. Like Ms. Emerson,Mr. Holtackers believes that inactivity worsens his fatigue,so he sticks to his fitness schedule whenever possible. Hesometimes uses adaptive equipment, such as a wheelchairor a walker, to optimize his energy expenditure.

Francois Bethoux, MD, Director of Rehabilitation Servicesat the Mellen Center for MS Research and Treatment, a partof the Cleveland Clinic, stresses the importance of proper fa-tigue management.The center has developed a multifacetedfatigue-management program for its clients, using medica-tions such as modafinil and the antiviral drug amantadinealong with a rehabilitation program.

“Our approach combines education with behavior and life-style changes, such as the use of relaxation techniques,” Dr.Bethoux explains.“We create personalized home exercise pro-grams and provide clients with guidelines on how they cansave energy throughout the day.” He notes that many peoplewith MS tend to schedule activities for early afternoon—precisely the time when most of us have naturally decreasedenergy levels—and advocates rearranging the day’s scheduleto avoid activities that “collide with” that time of day.

Dr. Bethoux also points to growing evidence that physical fit-ness and exercise are crucial to effective fatigue management.“Frequency of exercise is more important than duration or in-tensity,” he adds.“If a person with MS does 15 or 20 minutes ofspecially tailored exercise at least five days a week, it should beenough to help make his or her fatigue better.”

Those with MS who do not have access to multidiscipli-nary treatment teams can obtain the fatigue managementguidelines published by the MSS. The Fatigue Severity Scale(page 7) can be used as an entrée to discussing MS fatiguewith a clinician. 8

Frequencyof exerciseis more im-portant thanintensity.Fifteen or20 minutesfive days aweek shouldhelp makefatigue better.

6

Fatigue Severity Scale The Fatigue Severity Scale is a method of evaluating the impact offatigue on you. The questionnaire contains nine statements thatrate the severity of your fatigue symptoms. Read each statementand circle a number from 1 to 7, based on how accurately it reflectsyour condition during the past week and the extent to which youagree or disagree that the statement applies to you.

A low value (eg, 1) indicates strong disagreement with the state-ment, whereas a high value (eg, 7) indicates strong agreement.

It is important that you circle a number (1 to 7) for every question.

During the past week, I have found that: Disagree Agree

1. My motivation is lower when I am fatigued . . . . . . . . . . . . . . . . . . . . . . 1 2 3 4 5 6 7

2. Exercise brings on my fatigue . . . . . . . . . . . . . 1 2 3 4 5 6 7

3. I am easily fatigued . . . . . . . . . . . . . . . . . . . . . . 1 2 3 4 5 6 7

4. Fatigue interferes with my physical functioning . . . . . . . . . . . . . . . . . . 1 2 3 4 5 6 7

5. Fatigue causes frequent problems for me . . . 1 2 3 4 5 6 7

6. My fatigue prevents sustained physical functioning . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1 2 3 4 5 6 7

7. Fatigue interferes with my carrying out certain duties and responsibilities . . . . . . . . . . 1 2 3 4 5 6 7

8. Fatigue is among my three most disabling symptoms . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1 2 3 4 5 6 7

9. Fatigue interferes with my work, family, or social life . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1 2 3 4 5 6 7

Total Score ––––––––––––––––

Scoring your results:Now that you have completed the questionnaire, simply add allthe numbers you circled to get your total score.

The Fatigue Severity Scale key:A total score of less than 36 suggests that you may not be sufferingfrom fatigue.

A total score of 36 or more suggests that you may need furtherevaluation by a physician.

Your next steps:This scale should not be used to make your own diagnosis.

If your score is 36 or more, please share this information with yourclinician.

Fatigue Severity Scale © Lauren B. Krupp. Reproduced with permission from the author.

7

A Jobson Company

C L I N I C I A N SG R O U P