View
219
Download
0
Category
Preview:
Citation preview
8/3/2019 Fibro Book
1/29
Get toKnow Fibro
Beginanewjourney
andstartmanaging
yourfbromyalgia
8/3/2019 Fibro Book
2/29
8/3/2019 Fibro Book
3/29
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
8/3/2019 Fibro Book
4/29
pg. 4
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
8/3/2019 Fibro Book
5/29
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.
8/3/2019 Fibro Book
6/29
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.
8/3/2019 Fibro Book
7/29
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.
8/3/2019 Fibro Book
8/29
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.
8/3/2019 Fibro Book
9/29
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.
8/3/2019 Fibro Book
10/29
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.
8/3/2019 Fibro Book
11/29
pg. 11
Keepreadingtolearn
aboutonewomansexperiencewith
fbromyalgia
8/3/2019 Fibro Book
12/29
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
8/3/2019 Fibro Book
13/29
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.
8/3/2019 Fibro Book
14/29
pg. 14
My JOurNEy TO KNOw FiBrO
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
8/3/2019 Fibro Book
15/29
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
8/3/2019 Fibro Book
16/29
pg. 16
My JOurNEy TO KNOw FiBrO
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
8/3/2019 Fibro Book
17/29
pg. 17
8/3/2019 Fibro Book
18/29
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)
8/3/2019 Fibro Book
19/29
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.
8/3/2019 Fibro Book
20/29
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
8/3/2019 Fibro Book
21/29
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.
8/3/2019 Fibro Book
22/29
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
8/3/2019 Fibro Book
23/29
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.
8/3/2019 Fibro Book
24/29
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
8/3/2019 Fibro Book
25/29
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
8/3/2019 Fibro Book
26/29
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.
8/3/2019 Fibro Book
27/29
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.
8/3/2019 Fibro Book
28/29
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.
8/3/2019 Fibro Book
29/29
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.
Recommended