Fibro Book

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Get toKnow Fibro

Beginanewjourney

andstartmanaging

yourfbromyalgia

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TABLE OF CONTENTS

Foeod ......................................................................................................................pg. 4Contbtng Exets ...................................................................................................pg. 5

ChApTEr 1 GET TO KNOw FiBrOWhat Is Fibromyalgia? ..................................................................................................pg. 6Fibromyalgia Can Be More Than Just Pain ..................................................................pg. 7

Pain ............................................................................................................................pg. 7Tenderness ................................................................................................................pg. 7Fatigue .......................................................................................................................pg. 7

Problems With Memory, Concentration, Or Disorganized Thinking ........................pg. 7Emotional Changes ...................................................................................................pg. 8Sleep Problems .........................................................................................................pg. 8

What Causes Fibromyalgia? .........................................................................................pg. 8A Balancing Act .........................................................................................................pg. 8Genetics And Environment .......................................................................................pg. 9Stress And Triggering Events ...................................................................................pg. 9

How Do I Know I I Have Fibromyalgia? ........................................................................pg. 9Who Treats Patients With Fibromyalgia? ............................................................... pg. 9-10

ChApTEr 2 My JOurNEy TO KNOw FiBrO

Fibromyalgia Stole 12 Years O My Lie ......................................................................pg. 12A Name For The Pain ..................................................................................................pg. 13Fibromyalgia Taught Me Many Things About Mysel ..................................................pg. 14Ive Learned How To Successully Manage My Symptoms................................... pg. 15-16

ChApTEr 3 GET TO KNOw hOw TO MANAGE FiBrOManaging Fibromyalgia Starts With You ....................................................................pg. 18

Educate Yoursel .....................................................................................................pg. 18Treatment ................................................................................................................pg. 18

Medication ..........................................................................................................pg. 18

Cognitive Behavioral Therapy ............................................................................pg. 19Being Physically Active ..........................................................................................pg. 19Can I Really Do This? ..........................................................................................pg. 19

Sel-Management Skills .........................................................................................pg. 20Goal Setting ........................................................................................................pg. 20Problem Solving .................................................................................................pg. 21Pacing .................................................................................................................pg. 22Reraming ..................................................................................................... pg. 22-23Relaxation Techniques .......................................................................................pg. 23

Achieving The Relaxation Response ........................................................ pg. 23-24Overcoming Barriers And Challenges ...............................................................pg. 24

Managing Sleep ..................................................................................................pg. 25Communication ..................................................................................................pg. 26

Conclson ..................................................................................................................pg. 28

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FOrEwOrD

GET TO KNOw FiBrO

Millions o Americans are living with a disorder called bromyalgia that has longbeen misunderstood and misdiagnosed. It may have taken months or even years tobe diagnosed with bromyalgia. It is important or you to know you are not alone onthis journey.

In the ollowing chapters, you will read valuable inormation about bromyalgia,including tips rom Daniel J. Clauw, M.D., a leading medical expert who has beentreating people with the disorder or more than 20 years, and the personal story oMartha Beck, Ph.D., a lie coach with bromyalgia who is determined to live well.

Know Fibro arms you with inormation about bromyalgia and providesyou with tips that may be used to help manage some symptoms o thedisorder. KnoFbo.com eatures FibroGuide: A Symptom ManagementProgram for People Living with Fibromyalgia, an interactive symptommanagement program that can help you learn ways to manage yourbromyalgia. Only a healthcare provider can diagnose bromyalgia. Talk toyour healthcare provider about your symptoms.

Each person with bromyalgia has a dierent experience, and there is noone-size-ts-all approach to managing the disorder. The inormation in thisbook may be supplemented with interactive tools and more comprehensiveinormation ound at .KnoFbo.com. We hope these resources helpincrease your understanding o how bromyalgia may impact your lie, andthat the tips provided will help you manage the disorder.

Tolearnmoreaboutfbromyalgia,

pleasevisit

www.KnowFibro.com

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pg. 5

CONTriBuTiNG EXpErTS

CONTriBuTiNG EXpErTS

MArThA BECK, p.D., FiBrOMyALGiA pATiENT, LiFE COACh, AND AuThOrDr. Beck has lived with bromyalgia or almost 30 years and understands thechallenges those with the disorder ace. She has a Bachelors, a Masters, and aPh.D., all three rom Harvard University, and has published books and articles on avariety o social science and business topics. She also is a columnist or O, the OprahMagazine. Dr. Beck is sharing her story as the ocial spokesperson o Know Fibro.

DANiEL J. CLAuw, M.D., prOFESSOr OF ANESThESiOLOGy AND MEDiCiNEAT ThE uNiVErSiTy OF MiChiGANA nationally-recognized physician and bromyalgia expert, Dr. Daniel Clauwis the director o the Chronic Pain and Fatigue Research Center and directoro the Michigan Institute or Clinical and Health Research at the Universityo Michigan in Ann Arbor, Michigan. Dr. Clauw is passionate about educatingpeople about bromyalgia.

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pg. 6

GET TO KNOw FiBrO

whAT iS FiBrOMyALGiA?

Fibromyalgia is a chronic pain disorder that aects an estimated 2% o the U.S.

population. Women are more likely to be diagnosed with bromyalgia, but men also

develop the disorder.

The American College o Rheumatology (ACR) published research criteria or

classiying bromyalgia in 1990.These criteria included the presence o widespread

pain and tenderness in at least 11 o 18 specic tender point sites on physical

examination.Pain was considered chronic and widespread when it occurred on both

sides o the body, above and below the waist, and along the axial skeleton or at least

three months.This denition was primarily intended or use in research settings

to more uniormly evaluate patient-reported pain. In clinical practice, physicians

may assess tenderness in other ways, or may even be comortable diagnosing

bromyalgia without conducting a complete tender point examination.

ChApTEr 1

The disorder currently

called fbromyalgia

has been recognized in

medical literature or

many years, but with

other names. A medical

paper published in 1977

re-ignited interest in

the disorder, and called

or the development o

a more uniorm set o

criteria or diagnosis.

ASK ThE EXpErT: Living it fbomyalgia and managing te symtoms is

difcult. wat do you tell you atients?

Daniel J. Clauw, M.D.: Managing fbromyalgia can be difcult, but it is possible.

Here are some tips I give my patients:

Focusonwhatyouneedtodotogetbetter,notwhatcausedyourillness.

Look or treatments, not cures.

I your symptoms get worse, talk to your healthcare provider beore making

any changes.

Try to incorporate exercise. I you cant exercise, try to be more active.

When a treatment improves your symptoms, try to increase your day-to-day

unctioning.

Consider exploring cognitive behavioral therapy.

There is hope educate yoursel and get involved in your own health care.

Find a healthcare provider who will work with you and be sure to discuss these tips

with him or her.

Keep reading to learn more about Dr. Clauws advice and how you can incorporate

these tips into your everyday lie.

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pg. 7

FiBrOMyALGiA CAN BE MOrE ThAN JuST pAiN

One consistent thing about bromyalgia is its inconsistency. No two people

experience bromyalgia in the exact same way. The dening symptoms o

bromyalgia are chronic widespread pain and tenderness, but people living with

the disorder also may experience other symptoms, including atigue, problems

with memory, concentration or disorganized thinking, emotional

changes, and sleep problems.

pAiN

The universal symptom o bromyalgia is widespread pain. The

pain may be elt anywhere in the body (muscles, bones, joints,

internal organs) and may vary in severity rom hour to hour or

day to day. Pain levels also can fuctuate or various reasons,

including activity patterns, sleep problems, stress levels, andeven the weather.

TENDErNESS

One o the common ndings in people with bromyalgia is

that they are tender throughout their body, in addition to

those regions considered tender points. In clinical practice,

healthcare providers may assess tenderness in other ways,

such as by pushing in several areas o the body.

FATiGuE

Some studies have identied atigue as one o the most troublesome and

common problems in bromyalgia. As many as 76% o people living with

bromyalgia reported clinically important levels o atigue.

prOBLEMS wiTh MEMOry, CONCENTrATiON, Or DiSOrGANizED ThiNKiNG

Have you ound yoursel unable to remember the names o people youve known

or many years? Do you sometimes nd it dicult to concentrate on tasks? People

with bromyalgia sometimes experience moments o orgetulness, diculty

concentrating, and troubles with memory, oten reerred to as bro og.

In the upcoming chaptersyou will read about severalapproaches to help manage

some common symptomso bromyalgia.

Te 18 tende ontstes n te dagamabove eesent aeasealtcae ovdesma ess n ode toassess fbomalga.

Go to .KnoFbo.com

to learn more about bro og

and learn tips to help with

memory and concentration.

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pg. 8

GET TO KNOw FiBrO

EMOTiONAL ChANGES

Many people living with bromyalgia experience depression at some point in their

lives. Depression is a serious medical illness in which there is a depressed mood or

loss o interest, with other symptoms that may include changes in appetite, weight,

sleep, or atigue.

SLEEp prOBLEMS

Whether its simply hard to all asleep, or you wake up many times throughout the

night, the amount and quality o sleep can greatly impact your enjoyment o lie.

One study showed that up to 75% o people living with bromyalgia had abnormal

sleep patterns. Even ater sleeping through the night, people with bromyalgia may

not eel rested.

When asked to rank the intensity o their symptoms, people living with bromyalgia

responded that in addition to pain, morning stiness, atigue, and non-rereshing

sleep, concentration and memory were the most common. I you have experienced

any o these symptoms, you are not alone. It is important to track all o your

symptoms and discuss them with your healthcare provider to develop a treatment

plan that works best or you.

whAT CAuSES FiBrOMyALGiA?

The exact causes o bromyalgia remain unknown. Some medical experts believe it

is due to some combination o changes in brain and spinal cord chemistry, genetics,

and stress.

A BALANCiNG ACT

Some researchers have come to believe that bromyalgia may be linked to

abnormal levels o naturally occurring substances (such as substance P, serotonin,

norepinephrine, and dopamine) in the brain, spinal cord, and body that help let you

know when you are experiencing pain. Abnormal levels o these substances may

increase the sensitivity o your nervous system so that normally non-painul stimuli

become painul.

ChApTEr 1

You are a member o your

medical team. Be sure to

play an active role and help

your healthcare provider

gain a clear understanding

o what youre experiencing.

Consider taking a

completed personal

symptom tracker to your

next appointment.

Senstvt to pan

I you think o yoursensitivity to pain assomething that can beturned up or down, likethe volume on a radio,bromyalgia may causeyou to eel as i yoursensitivity to pain hasbeen turned to the highestpossible setting.

People with bromyalgiaexperience pain dierentlythan other people.

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pg. 9

GENETiCS AND ENVirONMENT

People with bromyalgia oten have close relatives with similar symptoms. Some

research has shown that genetics and environmental actors may work together

to trigger bromyalgia.

STrESS AND TriGGEriNG EVENTS

People with bromyalgia oten associate a specic event with the onset o their

symptoms. In one study, possible triggers o the disorder included ongoing

stress, emotional trauma, illness, physical injury, surgery, motor vehicle

accidents, and other injuries.

hOw DO i KNOw iF i hAVE FiBrOMyALGiA?

Only a healthcare provider can diagnose bromyalgia. The disorder cannot be

detected with blood tests or x-rays. However, your healthcare provider mayconduct these tests to rule out other conditions with some similar symptoms.

Your healthcare provider may ask about your medical history (including amily

medical history) and a list o symptoms you have experienced, in addition to

conducting a physical examination.

whO TrEATS pATiENTS wiTh FiBrOMyALGiA?

Healthcare proessionals who may provide inormation about and treatment or

bromyalgia may include the ollowing: Primarycareorfamilyphysician

Rheumatologist

Pain management specialist

Physical therapist

Psychiatrist or other counselor (psychologist or social worker)

Seeing a healthcare provider or a condition that has no apparent cause can be

rustrating. Having tests that do not provide answers can be tiring. Remember

that bromyalgia is real, even i it cant be diagnosed by an x-ray or blood test.

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pg. 10

GET TO KNOw FiBrO

It is important that you and your healthcare providers work together to develop a

bromyalgia care plan that is based on your individual symptoms and liestyle so that

you are willing and able to put the plan into action. Your care plan may include:

Education to help you learn more about bromyalgia and how to help manage

the symptoms that you are experiencing.

Physical activity based on your needs and abilities. Activity may be an important

part o your bromyalgia care plan. Be sure to talk with your healthcare provider

beore starting or changing your level o physical activity.

Multiple medicines, both non-prescription and prescription, depending on your

symptoms. For example, your healthcare provider may suggest an over-the-counter

pain medication or prescribe medicines to help with pain or sleep problems.

GETTING THE MOST FROM YOUR APPOINTMENTS

Getting the most rom appointments with your healthcare provider is important. Itmay take several visits and trial and error beore you and your healthcare providercan determine the best treatment plan or you. The tips below may help you getmore useul advice at your appointments:

Write down what you want to discuss with your healthcare provider.

Considerbringingalongsomeonewhocanlistenandevenaskadditionalquestions.

Bring a list o your medications.

I you are a new patient, have your medical records transerred beore yourrst visit.

Be sure you understand your healthcare providers advice; dont hesitate toask him or her to repeat something, or even to write it down or you.

Keep track o your symptoms between visits.

ChApTEr 1

Flip to Chapter 3 to learn

about management

options or bromyalgia.

Check out the helpul tips

and examples o everyday

activities you can include

in your routine. Youll nd

more inormation and

interactive tools online at

.KnoFbo.com.

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pg. 11

Keepreadingtolearn

aboutonewomansexperiencewith

fbromyalgia

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pg. 12

My JOurNEy TO KNOw FiBrO

FiBrOMyALGiA STOLE 12 yEArS OF My LiFE NOw iM LiViNG LiFE TO ThE FuLLEST.

I someone had told me when I was a marathon-running teenager that I

would be living the rest o my lie in pain, I wouldnt have believed it. But

that unimaginable truth quickly became a reality or me when I was 18

years old.

At the time, I was jogging about 100 miles a week. One aternoon, while I was on a run,

a car swerved, hitting me rom the side and propelling my body into a pile o gravel. It

wasnt until years later that I would identiy that physical trauma as the likely trigger

event or my bromyalgia.

The next 12 years o my lie may sound amiliar to you an endless cycle o pain,

atigue, ear, sadness, and anxiety; countless visits to every type o healthcare provider

you can imagine; blood tests, MRIs, CT scans, anything to try to nd out what was

wrong with me.

Through all the pain I struggled to appear what I considered normal, but it wasnt

easy. I attended college and later earned my Ph.D., creating coping skills or each

new challenge along the way. When my legs hurt so badly I could hardly walk, I

used crutches to get around campus. At times my hands hurt so badly I could barely

use them, so I taped pencils to my ngers and typed by striking the computer keys

with the erasers. Not able to take notes, I had to memorize material just when

my brain seemed to be ogging over. I used every technique I could to enhance my

memorization skills.

Things got even harder when I started a amily. Being a wie and mother requires

ar more time and attention than my symptoms allowed. I spent a lot o time in bed

and oten elt guilty about what I thought o as my inability to be a good mom. Since

creating a happy home and raising my kids well was something I desperately wanted,

I continued seeing healthcare providers, trying to nd some explanation or pain that

was overwhelming to me, yet invisible to others even medical proessionals.

Time and time again I was told that I must have a low threshold or pain, it was

all in my head, that nothing was wrong with me. Since my healthcare providersdidnt know what to do, they simply recommended rest, rest, and more rest.

ChApTEr 2

Fo so long i elt

as tog i ee

taed on a deset

sland. Sometmes

id tnk tee

mgt be a s,a bt o oe, on

te oon. id

jm and sceam,

to all m

eneg nto gettng

te attenton o

someone o

ealed ee i

as, and o to

el me. Bt eve

s saled aa.

Mata Beck

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pg. 13

I complied, but things kept getting worse. Not only did the pain keep increasing,

but my lack o mobility and my reluctance to be a whiner made me isolate

mysel more and more.

I began putting walls around mysel, withdrawing rom those around me. It was

easier to stay home than to struggle through social events trying to act normal,

while amily and riends shot doubtul glances at my inability to participate ully in

common activities like cooking and playing with children. I elt judged and eared

that everyone thought I was a bad mother.

As years passed, the stress o pretending nothing was wrong, that I was healthy,

was wearing me down. My sel esteem was in negative numbers, and I elt sad and

lonely virtually all the time. I was running out o hope when everything changed.

I had just moved to a new city, and while talking about my medical history with a

new general practitioner, I encountered something no other healthcare providerhad oered me: validation and trust in my experience. He went to his oce

or a medical textbook, in which he ound a short entry about a disease called

bromyalgia. He read the description aloud. It was everything I was experiencing

widespread pain, atigue, trouble sleeping, anxiety, and depression.

ThAT BriEF iNTErACTiON ChANGED My whOLE LiFE.

i FiNALLy hAD A NAME FOr ThE pAiN.

Ater searching and suering or 12 years, receiving a ormal diagnosis o

bromyalgia was a watershed moment. A credible source said I had a real

disease! It gave me the validation I needed to begin addressing the real problem.At age 31, I began my second lie.

My healthcare provider and I developed a care plan that included regular exercise,

plenty o sleep, and medication to treat my symptoms. I still elt the doubt and ear

Id lived with or so many years, but there also was new optimism and strength.

I was ready to manage bromyalgia.

Mind you, that didnt happen overnight. In act, it continues to this day. For me,

managing bromyalgia required a lot o liestyle changes that Ive learned through

trial and error. Its also a two-steps-orward, one-step-back process; symptomscan improve one day and become worse the next.

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pg. 14


The key is learning to pace yoursel, and knowing when to exercise, when to relax,

and when to stay in bed. Its vital to stay positive and give yoursel time to gure out

whats best or you. Fibromyalgia is a complex disorder, but it can be managed.

FiBrOMyALGiA TAuGhT ME MANy ThiNGS ABOuT MySELF.

iM ThANKFuL FOr ThAT.

It may sound strange, but in some sense bromyalgia has led to many o the positive

things in my lie. Living with the disorder orced me to develop strategies to make it

through each day. The ability to creatively solve my problems led me to become a lie

coach, helping other people to do the same.

Ive been able to play an active role in my kids lives, live my dream o becoming a

writer, and travel. I regularly appear on The Oprah Winrey Show to oer lie coach

tips to millions o viewers. Even with bromyalgia, I have been able to lead a ullling

lie. People like you and me just have to become unusually skilled at listening to our

bodies and you have the power to do that.

While I eel incredibly lucky to have experienced such great things since I began

managing my bromyalgia, I still have to work consistently and diligently to stay

healthy. I monitor my diet closely, exercise oten, get as much sleep as possible

and above all, keep stress to a minimum by making choices that eel liberating

and right or me. Even though I incorporate all o these liestyle changes into my

routine, I still have about one dicult day a week. The important thing to remember

is that you are learning how to manage bromyalgia and there are ways to make

even the worst day better.

ChApTEr 2

CONSiDEr ThiS: Its oten hard to say you need a break, but adequate rest isevery creatures right. Take time to lie down, get a back rub, go on vacation, dowhatever it takes to relax. I give mysel permission to rest one day each week,and or several brie periods each day.

Mata Beck

Bod Comass

We each have a body

compass that tells us

whether our actions are

pleasing or upsetting to

our internal system. Be

sure to listen to your body

when learning how to

manage your symptoms.

- Martha Beck

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pg. 15

iVE LEArNED hOw TO SuCCESSFuLLy MANAGE My SyMpTOMS.

Learning how to manage bromyalgia is a personal experience that evolves over

time as you work with your healthcare provider. I want to share with you some o

the things that work well or me. Be sure to talk with your healthcare provider

beore trying techniques that you think may work or you.

KeepasymptomtracKer I track my daily activities and the level o

pain and other symptoms I experience during each event. I use this as a

guide to help me see which activities are good or bad or my body. I also

can use the inormation to make changes to my activities and limit my risk

o bro fares. I also share my tracker with my healthcare provider.

Learncopingtechniques I ound it important to develop coping

techniques to help address my bromyalgia symptoms. For example, when I

was in pain and couldnt get up to play with my kids, we created games that

allowed them to run around, read, play, and bounce on the king-sized bed

where I spent most o every day.

imaginebeinginapain-freepLace I learned how to visualize being

in a place that makes me happy and pain ree. I visualize mysel foating

in the ocean or skiing in untracked snow, and within minutes I can eel a

dierence in my pain.

setremindersformyimportantactivities I make a point o

keeping a detailed calendar that I reer to throughout the day in order to

remember all o my important activities. I also like to wear a wristwatchwith an alarm that I set to remind me o appointments.

LearnwhentorestandwhentoworKthroughthepain

Through trial and error I learned when I should rest, and when it might

help more to try going to the gym and working out those muscles. Staying

very aware o my physical sensations has helped me learn when to rest,

when to get active, and when to ask or medical advice.

ive leaned tatfbomalga s not

sometng to ea.

its sometng tat

can be managed.

Mata Beck

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pg. 16


Since long beore I was able to manage my symptoms o bromyalgia, Ive enjoyed

making lists o dreams I hoped to realize and things I wanted to experience in my

lietime. My dreams ranged rom simple things, like going or a pain-ree walk

or playing games with my kids, to big wishes, like having a successul career and

traveling to great destinations. Now that Ive learned how to successully manage my

pain, Im happy to say almost all the dreams on my list have come true.

I hope the example o my experience o living with bromyalgia helps you.

Keep reading to learn several more techniques that may help you manage your

bromyalgia symptoms and maintain your progress.

ChApTEr 2

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pg. 17

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pg. 18

GET TO KNOw hOw TO

MANAGE FiBrO

MANAGiNG FiBrOMyALGiA STArTS wiTh yOu

Now that you know more about bromyalgia, the next step is learning how to live

with the disorder. Although there is no known cure, there are many ways to help

manage bromyalgia symptoms.

Because everyone with bromyalgia has a dierent experience, there is no one-size-

ts-all approach to managing the disorder. That means the best person to address your

bromyalgia isyou. It is important to partner with your healthcare provider to manage

the disorder through education, treatment, and liestyle changes. This chapter outlines

several liestyle and behavioral changes that may help you live a more active lie.

Discuss with your healthcare provider which o these may be right or you.

EDuCATE yOurSELF

Learning about bromyalgia and how to manage the disorder can help you eel better.

By reading this resource, you already are taking an important step toward learning

more about bromyalgia and some possible ways to manage your symptoms.

Many people living with bromyalgia turn to the Internet or inormation about their disorder.

While it can be a good source o inormation and support, be sure you are accessing reliable

content. For example, be cautious o Web sites that promise a cure or bromyalgia.

TrEATMENT

Meication

Your healthcare provider may prescribe medication to help manage your bromyalgia.

The FDA has approved medications specically or the management o bromyalgia.

Healthcare providers may have dierent approaches to treating bromyalgia pain. It

is important that you work with your healthcare provider to develop the most eective

care plan or you.

ChApTEr 3

The sel-care skills

discussed within this

chapter and FibroGuide:A Symptom Management

Program for People Living

with Fibromyalgia are

based on the knowledge

and experience o

medical experts, as well

as patients, and evidence

rom research at the

Chronic Pain and Fatigue

Research Center at theUniversity o Michigan.

The sel-care skills

described in FibroGuide

have been shown to help

people with bromyalgia

successully manage

many o their symptoms

and eel better. Visit

.KnoFbo.com

to learn more aboutFibroGuide.

There are many credible and reliable Web sites with inormation about

bromyalgia, such as:

www.FMaware.org (National Fibromyalgia Association)www.med.umich.edu/painresearch (University o Michigan)

www.rheumatology.org (American College o Rheumatology)

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pg. 19

cblt

Cognitive behavioral therapy with a licensed therapist trained to treat patients

with bromyalgia has been shown to help people living with the disorder. Several

areas to consider ocusing your attention on include, improving sleep, relaxation

techniques, setting aside time or yoursel, and overcoming barriers and challenges.

beingphysicaLLyactive

Aerobic exercise perormed at adequate intensity or an individual person

may improve unction, symptoms, and well-being. Be sure to speak with your

healthcare provider beore starting or changing a physical activity routine.

cirlldt?

You may think that maintaining a regular routine that includes physical activity

or exercise is merely a recipe or an increase in painul symptoms. However,

being physically active does not mean you have to go to the gym every day. It can

mean taking a walk around the block or dancing to your avorite song. In addition,

there are many dierent types o exercises or you to try, such as swimming, yoga,

and walking that may t your capabilities and comort. Be sure to talk with your

healthcare provider beore starting or changing your level o physical activity oradding an exercise routine.

Chances are you already incorporate some type o physical activity into your

everyday routine vacuuming, washing dishes, or walking the dog. Consider

them when thinking o ways to increase your physical activity.

Cognitive behavioral

therapy is a type o talk

therapy through whicha therapist and a patient

work on identiying and

changing thoughts and

behaviors that may be

contributing to symptoms.

Stat o scalactvt o execseotne sloland gadallncease o leveland daton oactvt ove tme.Dont oveexetosel!

ASK ThE EXpErT:ikll.sli?

Daniel J. Clauw, M.D.: Fibromyalgia is a chronic disorder with no known cures, butsome symptoms can be managed. Be wary o exaggerated claims that promise acure. I it seems too good to be true, it probably is.

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pg. 20

GET TO KNOw hOw TO

MANAGE FiBrO

SELF-MANAGEMENT SKiLLSgls

Goal setting, like riding a bike or playing the piano, takes practice, patience, and

persistence. Whether or not you realize it, each o the liestyle changes outlined in this

chapter involve setting goals and taking small, steady steps toward reaching them.

Setting goals may help divert your attention away rom your pain and may provide

you an opportunity to think about your liestyle, and what you can do to better

manage your pain. Goals give you something to strive or.

One way to state your goals clearly is to use what is called the SMART approach tomake sure your goals are:

specific Know what you want to achieve, gure out how to do it, and set a

time rame or achieving it.

MEASURABlE Be sure you can tell whether you are achieving them. For

example, i one o your goals is to walk 10 minutes a day, wear a watch so you

can time yoursel.

ATTAINABlE Make sure your goals are reasonable. Start slowly and work up

to larger goals.

ChApTEr 3

Yoga involves breathing

and stretching

techniques, both o which

may be benecial to

those with bromyalgia

because they can

increase relaxation and

decrease pain. Yoga

classes are available in

many communities. I you

dont eel up to going to

a yoga class, rent a yoga

video or DVD and try it

in the comort o your

own home. Talk to your

healthcare provider rst

to gure out i yoga might

be right or you.

asKtheeXpert:ixikllll

,i.wliki?

Daniel J. Clauw, M.D.: First, talk to your healthcare provider to see i he or sheagrees that exercise is right or you. Here are a ew tips I give my patients to helpprevent them rom overdoing, and to get the most rom exercising:

pACE yOurSELF Increasing activity initially may result in more pain. To avoidproblems, pace yoursel and take regular breaks while you exercise.

STArT LOw, GO SLOw Start slowly with low-impact physical activity that tsinto your daily liestyle. For example, take the stairs instead o the elevator or parkarther away rom the store. Once you eel comortable, start to push yoursel alittle harder.

DONT GiVE up! Establishing a new routine may take time. Pride yoursel on thestrides you make each day and give yoursel all the time you need.

considerthis:

Getting my exercise

out o the way rst

thing in the morning

gives me a sense o

accomplishment, which

guides me throughout

the day.

Mata Beck

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pg. 21

reaListic Keep your abilities and limitations in mind when you think

about what you would like to achieve.

tracKabLe Look or ways to keep track o your progress, such as using

an exercise log.

Feeling healthier and stronger may be all the reward you need or reaching your goal.

But you also may want to do something special to reward yoursel. Decide in advance

how you want to reward yoursel, such as going to a movie or enjoying special time

with a riend or amily member. By giving yoursel something special to look orward

to, you may make working toward your goal a little easier i the going gets rough.

plsl

Frequent problems, challenges and barriers at work, school, or home are part o

everyones lie, but they may seem more dicult to overcome while also dealing

with bromyalgia. The problem-solving cycle that ollows was developed or otherchronic disorders, but it may help you break down any problems you may be

experiencing into simple, more manageable steps:

identifytheprobLem What is wrong?

coLLectinformation What do I already know about this problem?

Where can I learn more?

BRAINSTORM SOlUTIONS What are all o the potential solutions to this

problem? Note: Its important to think o all possible solutions beore you

start evaluating any o them. evaLuatebrainstormingideas Which o these solutions is

impossible? Why is it impossible? Which is most likely to work?

deveLopaworKabLepLan What steps should I take now that I have

identied the solution? What barriers might I encounter? What other

problems might arise rom taking this solution?

impLementworKabLepLan

reviewandevaLuate Is the problem resolved? Did I take the steps

that I outlined ahead o time? Did I encounter any barriers; i so, how could I

prevent them in the uture?

Go to

.KnoFbo.com

or more inormation

about goal-setting steps

and to learn more about

setting realistic goals

to help manage your

bromyalgia.

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pg. 22

GET TO KNOw hOw TO

MANAGE FiBrO

Developing problem-solving skills can help you overcome obstacles, while helping

ensure bromyalgia doesnt stop you rom reaching your goals. Talk with your

healthcare provider to determine i this problem solving technique is right or you.

pHave you ever done too much when you elt well and then paid or it later? I so,

then you may have allen into a rustrating cycle in which you overdo it and then eel

worse, which causes you to then have more pain and atigue. Overexerting yoursel

can cause a fare-up.

A great way to help avoid getting stuck in this cycle is to use time-based pacing.

Stopping and resting or a set amount o time when you are active may help you get

more done and reduce your risk or having fare-ups. This rhythm o activity and rest

divides tasks into the ollowing 3 steps:

1. Do the task or a set amount o time.

2. Rest or a set amount o time, even i you are not nished with the task.

3. Repeat steps 1 and 2 until the task is done.

For example, i you want to clean your kitchen, establish a time limit and stick to it.

Clean as much as you can until you reach the time limit, and then take a break.

r

Living in constant pain can leave both your mind and your body eeling tired and

worn out. When you are tired, your brain may lack the energy to think sharply andcreatively, so you may tend to ocus on the thoughts that come quickly to your mind.

Reraming does not mean denying problems or stifing negative emotions. It simply

means taking a step back, analyzing the situation, and trying to think in a more

positive, glass-hal-ull, action-oriented way. This method o thinking requires

practice, but it can be helpul to manage the symptoms o bromyalgia.

ChApTEr 3

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pg. 23

Your mind plays an important role in how you eel. So i negative automatic

thoughts (I cant do anything anymore) lead to negative eelings (I eel guilty

about how little I can do), then positive automatic thoughts (I can do something

today) may lead to positive eelings (I eel hopeul about my day). Because

negative emotions may leave you eeling worse, it makes sense that positivethoughts may help you eel better emotionally.

rlxt

By learning relaxation exercises, you may be able to teach your body how to relax in

the presence o the pain o bromyalgia. Relaxation may help release the tension

throughout your body. With practice, these relaxation techniques may help you:

Lessenyourbromyalgiasymptoms.

Raise your energy level.

Sleep better.

Ease your stress.

Manage your emotional responses, such as anger or rustration.

Achieving The Relaxation Response

A good relaxation technique or you is one that you enjoy and will do on a regular

basis. Your healthcare provider can help you choose an appropriate technique.

The techniques listed below may help you train your body to produce the

relaxation response:

progressivemuscLereLaXation This technique involves tightening and

then releasing, or relaxing, your dierent muscle groups one ater another.

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pg. 24

GET TO KNOw hOw TO

MANAGE FiBrO

GUIdEd IMAGERY This method has you picture a calm and relaxing place or

circumstance in your mind so your body can relax.

deep-breathingeXercises These exercises can help you slow down and

control your breathing. Taking a deep breath in and letting it out at a slow, steady

pace may help calm your whole body and reduce stress.

MEdITATION When you meditate you ocus steadily on a specic object, event,

or idea to quiet your mind and body. This may help you manage stress and other

symptoms, such as pain and atigue.

biofeedbacK Bioeedback machines help you visualize on a monitor what

is going on inside your body, such as muscle tension. During a bioeedback

session, a therapist applies sensors to various parts o your body. These sensors

are attached to a monitor that shows your heart rate, blood pressure, and brain

wave activity. Then the therapist will use relaxation techniques to help calm you.

You will see the changes in how your body reacts on the monitor. You then willlearn how to use these techniques yoursel.

Talk to your healthcare provider about where to nd additional inormation about

relaxation techniques.

obacll

Enjoying yoursel may seem like a low priority to you when there are many demands

on your time and energy. But eeling recharged benets both you and those

who depend on you. The ollowing ideas may help you to overcome barriers and

challenges you may ace.

idonthavetimetoenjoymyseLf Just as a car needs gas to run, you

need to recharge and reuel your mind and body. Pleasant activities can be that

uel. Taking just ve minutes to read a unny cartoon or a note rom a riend may

give you a little boost and help take your mind o your symptoms. But i you

dont take time to renew yoursel, you may exhaust yoursel and run out o gas.

itshardtomaKeenjoyabLeactivitiesapriority One way to make

pleasant activities a priority is to simply start somewhere, even i you start small.

Setting small realistic goals such as ve minutes o an enjoyable activity insteado 15 or 30 is a way to get used to adding activities back into your routine.

ChApTEr 3

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pg. 25

asKtheeXpert:illkl

.wi?

Daniel J. Clauw, M.D.: Getting the best and right amount o sleep oten is dicult

or people living with bromyalgia. Here are a ew tips to consider:

YOUR BEd IS FOR SlEEP, NOT FRUSTRATION Only get into bed when youre

tired. I you cannot all asleep within 15 minutes, get up and try reading or

listening to relaxing music. When you are sleepy, go back to bed.

avoidnapping Its important to train your body to be sleepy at bedtime,

not during the rest o the day. Napping can make you more awake when its

time to go to bed, and consequently more tired when its time to be awake.

dontwatchthecLocK There is nothing more rustrating than watching

the minutes or even hours slowly tick by when youre tossing and turning at

night. Try setting your alarm, then place it out o sight.

msl

Sleep problems are a common complaint among people living with bromyalgia.

Developing good sleep behaviors and teaching your body to accept a new sleep pattern

requires patience and commitment. The techniques ound in Ask the Expert may help

you all asleep aster, stay asleep longer, and wake up eeling more rested and rereshed

considerthis:

Determine the amount

o sleep your body needs

and create a sleeping

schedule that works

or you. I need up to 10

hours o sleep each night

in order to eel my best.

Mata Beck

tll.

pll,,

l.

Fibrog

l

break

l.

pl:l

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pg. 26

GET TO KNOw hOw TO

MANAGE FiBrO

c

Because symptoms such as pain and atigue are not visible to others, bromyalgia

may seem like an invisible illness. While you know only too well how your symptoms

make you eel, others may not see or ully understand what you are going through.

Becoming an assertive communicator may increase the chances that your amily

members, riends, and healthcare providers understand what you are going through and

how they can help. A ew simple but important ideas may help you communicate better:

peae what you want to say beore you say it.

Sta on the subject and be direct and concise while constructively sharing yourneeds and concerns. Dont try to talk about more than one or two things, even ithere is more you want to discuss.

Lsten ell and avoid talking over other people. Think o verbal communicationlike a tennis match: conversation goes back and orth.

Acknoledge other peoples eelings. This lets them know they have been heardand may help them to be more understanding o your concerns.

Fnd ways to compromise. It might be hard sometimes to agree with other people,but i you can see a way to compromise, suggest it.

Be secfc. Try to ocus on what someone actually says or does in a certaininstance, rather than making vague or broad accusations.

Sae your emotions. Share how you eel about someones behavior. Try not tomake broad statements.

Cleal tell people what you want them to do next time in a similar situation. Try tobe specic and realistic. I you recognize that you were unclear in your request, letpeople know that you take share o the blame or the problem and that you want tohelp nd an answer.

Evalate how your conversation went. Take time to think about how your conversationwent so you know what to work on to improve communication or next time.

ChApTEr 3

Go to

.KnoFbo.com

to learn more about specic

communication styles

and tips or improving

communication skills.

ESTABlISH A PATTERN Go to bed at the same time every night, and i

possible, try to get the same amount o sleep each night.

watchwhatyoueatanddrinKbeforebedtime Avoid eating a

heavy meal and drinking too much, avoid caeine or our to six hours beore

going to bed, and avoid alcohol and smoking beore bedtime.

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pg. 27

asKtheeXpert:tl

i.cl?

Daniel J. Clauw, M.D.: The lack o credible and reliable inormation has led to

many misperceptions about bromyalgia. Below are some common myths and

acts about the disorder:

MyTh

Only women can develop bromyalgia.

People with bromyalgia should

not exercise.

Relaxation techniques are not helpul

in easing pain.

Less activity is better or people

with bromyalgia.

People with bromyalgia should not

set goals or their treatment program;

its highly unlikely they

will be able to complete them.

When in pain, its best to just stop

everything and wait it out.

The thoughts you process dont aect

how you eel.

FACT

Men also may develop bromyalgia.

Physically active people with

bromyalgia report less pain,

better unctioning, and overall

better well being.

Relaxation techniques can help

decrease pain and sleep problems

while increasing productivity andconcentration.

Pleasant activities can help distract

your attention rom pain, may lead

to happier emotions, and limit the

intensity o your pain.

It is important to set goals or yoursel

so you can see how well a treatment

program is working or you.

Learning how to pace yoursel is important

in order to help manage your pain.

Your thoughts infuence how your

brain processes pain and how you eel.

Reraming your thoughts can reduce

negativity and may improve your

overall health.

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pg. 28

CONCLuSiON

It can be dicult to stay positive when living with bromyalgia, but eeling better is

possible. There are many dierent liestyle changes and thought process adjustments

you can make to help manage some symptoms o the disorder. Be patient and take

your time. Finding and making changes that work or you may take a lot o eort. Be

sure to reward yoursel or all o the steps you take toward your goals and dont give

up. Talk with your riends, amily, and co-workers so they understand the challenges

you ace and the changes you will be incorporating into your daily lie. We hope this

book helped you increase your understanding o bromyalgia and that you ound

some helpul tips or managing the disorder.

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For more inormation, visit .KnoFbo.com.

DD49318 2008 Eli Lilly and Company.

Get toKnow Fibro

abouteLiLiLLyandcompany

Lilly, a leading innovation-driven corporation, is developing a growing portolio o rst-in-class and

best-in-class pharmaceutical products by applying the latest research rom its own worldwide laboratories

and rom collaborations with eminent scientic organizations. Headquartered in Indianapolis, Indiana, Lilly

provides answers through medicines and inormation or some o the worlds most urgent medical

needs. Additional inormation about Lilly is available at www.lilly.com.

aboutthenationaLfibromyaLgiaassociation

The National Fibromyalgia Association (NFA) is a nonprot 501(c)(3) organization whose mission is to

develop and execute programs dedicated to improving the quality o lie or people with bromyalgia. The

NFA concentrates on patient support services, awareness outreach, physician education, and research.

The NFA produces inormational materials, hosts a patient Web site, www.FMaware.org, and a healthcare

provider Web site, www.bromyalgiaHCP.org, and publishes the only bromyalgia consumer magazine,

Fibromyalgia AWARE.

Documents

Fibro Book