Fibromyalgia treatment guide overview

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Your Fibromyalgia Treatment Guide

Treating Fibromyalgia Through the Development, Validation and
Utilization of an Individualized Self-Management System.

Brought to you by: Fibromyalgia-Treatment.com

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Table of Contents
Introduction ..................................................................................................................................... 5
Chapter 1: Getting Started: From Confusion to Knowledge ...................................................... 10
Associations and Internet Resources .................................................................... 13
Magazines and Journals ........................................................................................ 14
Doctors, Care Providers, and Therapists............................................................... 15
Support Groups ..................................................................................................... 16
Support Groups and Accountability...................................................................... 17
Primary Focus ....................................................................................................... 18
Chapter 2: Reviewing Fibromyalgia ............................................................................................ 19
History and Introduction ....................................................................................... 19
Demographics ....................................................................................................... 20
Symptoms ............................................................................................................. 20
Fibromyalgia Triggers .......................................................................................... 27
Diagnosis............................................................................................................... 27
Causal Theories ..................................................................................................... 29
Chapter 3: Fibromyalgia: The Elusive Fiend .............................................................................. 30
General Confusion ................................................................................................ 30
A Tough Nut to Crack........................................................................................... 32
Symptom–Cause Interplay and Confusion ........................................................... 32
Negative Feedback Loops ..................................................................................... 33
Medical System ..................................................................................................... 35
"Magic Pill Syndrome" ......................................................................................... 37
Effective Treatment - Overwhelming Options .................................................... 38
Chapter 4: Self-Management: Basis for Effective Treatment...................................................... 40
Taking Responsibility ........................................................................................... 40
Education - Laying the Foundation for Success ................................................... 41
Defining Your Fibromyalgia................................................................................. 42
Building Your Team ............................................................................................. 43
Take Action ........................................................................................................... 44
Setting Goals ......................................................................................................... 45
Become a Problem-Solver .................................................................................... 46
Evaluating Treatment Options .............................................................................. 47
Self-Empowerment ............................................................................................... 49
Self-Management Conclusion............................................................................... 50
Chapter 5: Treating Fibromyalgia: What you need to know ...................................................... 51
Medical Specialists ............................................................................................... 51
Create a Partnership with your Physician ............................................................. 55
FDA-Approved Pharmaceuticals .......................................................................... 57
Antidepressants ..................................................................................................... 59
Prescription Sleep Medications............................................................................. 60
Anti-Anxiety Medications .................................................................................... 60
Pain Management.................................................................................................. 61
Coping Strategies for Pain .................................................................................... 63
Dietary Supplements ............................................................................................. 63

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Diet ........................................................................................................................ 66
Exercise ................................................................................................................. 67
Therapies ............................................................................................................... 68
Chapter 6: Pulling it all Together: A Systematic Approach ....................................................... 70
Tools ..................................................................................................................... 75
Tracking Symptoms .............................................................................................. 77
Tracking Causal Relationships, Events, and Triggers .......................................... 77
Tracking Your Treatments .................................................................................... 78
“Intelligent Trial and Error” – A Concept and a System ...................................... 79
The Key to Success ............................................................................................... 80
Chapter 7: The Future: "FibroTrack" .......................................................................................... 81
FibroTrack: Internet Enhanced Self-Management............................................... 82
Disclaimer ............................................................................................................. 85

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Introduction
I am not a doctor, nor a research scientist, medical professor, nurse, therapist or
medical practitioner in any sense. There are no fancy plaques on my wall that
project some aura of authority over me on this subject (my degree is in History.). I
do not have fibromyalgia. So why am I writing an ebook on this subject - and why
should you pay any attention?

Fibromyalgia has undermined my life. It is working to destroy my wife and wreak
havoc on the lives of my 2 children. Experts always stress that writers and business
people should focus their efforts on something they are passionate about. Am I
passionate about fibromyalgia? Absolutely! I passionately hate it, to be precise. I
love my wife and I have watched her suffer to extremes as we both fought feelings
of helplessness and hopelessness for years. I qualify as an expert in how
fibromyalgia can destroy.

My wife and I chased a dream together. Not a small dream, not a typical sort of
dream but something extraordinary (at least to us). We got it into our heads that we
could move our family aboard a sailboat to live full time, home school our kids and
live a lifestyle of freedom and discovery spending quality time with each other and
our kids. We read, studied, learned and planned and in 2008 we began to make this
dream a reality. I purchased a 47' sailboat and poured all that we had into building
the boat into a home and restructuring our lives to make this huge change a reality.

Through all of this - we fought fibromyalgia. My wife Michele was diagnosed with
fibro in 2003 after the birth of our daughter. She exhibited some symptoms before
the pregnancy (her 2nd) but it was only after the c-section birth of our daughter
that the fibro began its assault in earnest. The diagnostic process was typically
confusing, frustrating and long. We suffered through multiple misdiagnoses, more
medical tests than we can recall and a long list of "treatments" - none of which
really achieved anything more than draining our bank account.

After being diagnosed with fibromyalgia and learning about the difficulties in
treatment, Michele began focusing her attention on researching and implementing
treatment options while my focus remained on running our business so we could
pay for the expensive treatment efforts she needed. (Self-employed with a very
small company - our insurance paid for essentially nothing). We went through
many doctors and tried different drugs and combinations of drugs and listened to
many specialists. Through it all the fibromyalgia waxed and waned but it was

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always there. At times things got better and we were deluded into believing a
corner had been turned only to feel crushed again when things got worse. But - we
maintained our dream.

Through 2008 as our efforts to make the sailing dream a reality began to pick up
steam we also increased the war against fibromyalgia. We began seeing a fibro
specialist center, and despite this care being extremely expensive, we went all-in.
We both believed that putting forth the effort in a big push to once and for all crush
this beast would yield success, and if it didn't, we had a backup plan. The backup
plan was simple - If you’re going to be in pain, you might as well be in pain in a
tropical paradise living aboard a boat. That sounded pretty good at the time.

All of the hard work and effort did pay off. Michele felt much better. In late 2009
we moved aboard our boat full time and began to "live the dream". We had
problems (the saying "Going cruising is just repairing your boat in exotic
locations" is true). We had adventures and we had fibro. After getting away from
the "Big Push" medical efforts the fibro began to slowly build back. After we
returned from the Bahamas in June of 2010, fibromyalgia flared with a vengeance,
raging like I had never seen before and transforming Michele into a complete
wreck.

We were convinced something more was wrong. This flare was different. The pain
was overwhelming but it went beyond that to shaking and convulsions and huge
migraines coupled with severe anxiety, bowel pains, horrible leg cramping and
other symptoms. Was this MS? Could a brain tumor be in play? What could be
causing all these new symptoms and in such severity? We were distraught and
confused, but one thing rapidly became clear - the "Cruising Dream" was dead.
Michele was in serious trouble. We had to seek medical care at once to find out
what was really wrong.

This was the worst time of my life. It's bad enough having dreams crushed, but
watching my wife suffer was overwhelming. We launched into a whole new
endeavor to determine what was wrong. Medical tests flew about like confetti on
New Years Eve. Medical bills flowed in on a scale that was shocking. We saw
every sort of doctor known to man. The end result, other than insane medical bill
totals, was simply this: fibromyalgia.

As we began dealing with fibro on a new level and working to put our lives back in
some semblance of order, I began to feel a new sense of mission. I would focus my
life on helping my wife overcome this disease and provide my family with the rich

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and productive life that they want and need. I had lots of ideas on what form this
might take, but the first step was to make myself an expert on fibromyalgia. I set
about this task aggressively reading everything I could find. I read books, studied
online, delved deep into research reports, contacted research scientists and in
general, did everything I could to figure out how to help my wife. I had every
expectation that my efforts would yield a magic combination of treatments that
would bring complete success.

I no longer have those expectations. Education and knowledge are wonderful
things, but in this case, reward was tempered as I began to realize that fighting
fibro is a war, not just a single battle.

I also understood that determining what treatments would be most effective for
Michele would be an individual struggle. I learned that fibromyalgia manifests
itself differently in each patient and that developing an effective treatment strategy
would require implementing strong systems in order to effectively manage
treatment efforts. I needed to be able to not only research what treatment options
were possible, but to quantify results and validate the combined treatment
approach that we were developing. I learned that the research data indicated a
multi-faceted treatment approach. Such an approach consisting of pharmaceuticals,
dietary supplements, exercise, diet changes, therapies and alternative medicine was
most likely to yield lasting results, but determining what combination would be
best for Michele would be an ongoing individual process.

The more I learned, the more I began to seek out information about self-
management programs. Among the very few things I found consistent among the
"experts" on fibromyalgia was the call for patients to embrace the concept of self-
management. It was clear to me: given the nature of fibromyalgia that a patient-
directed, team-focused self-management approach made by far the most sense,
but moving from the conceptual idea to implementation proved to be very
difficult.

I began to seek programs or systems to utilize in this process. Given that there is so
much material out there relative to management of illnesses in general, I expected
to find structured online programs specifically aimed at assisting those fighting
fibromyalgia in their running of an ongoing self-management program. I searched
extensively, but no such program existed. Experts and educational programs exist
that are aimed at convincing you that embracing the concept of self-management is
crucial to treatment success. However, I found nothing in online systems aimed at

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facilitating an ongoing process. Its one thing to learn what one may need to do, but
it is something else to determine how to actually do it. I found no "how."

This need is what has driven both this ebook and the development of the
FibroTrack application. My focus is not on telling you specifically what you need
to do in order to treat your fibromyalgia. Anyone who purports to tell you what
treatments will be effective for you probably does not understand fibromyalgia at
its most basic level. The reality is that effective treatment varies from patient to
patient and the only way you can tell if any given treatment will be effective for
you is to test it. My focus is on this part: the systems and processes required to
improve your ability to intelligently test and determine what does work, for you.

In effect, I am not trying to tell you what you should do for effective treatment - I
am suggesting to you how to proceed toward effective treatment. What is a self-
management program? How do you develop, implement, and manage one on an
ongoing basis? This ebook answers these questions.

The concepts and processes that I present in this book are not new. I have not been
engaged in new conceptual research and the processes discussed here are not
revolutionary new developments. What I have done is take existing research data
and treatment process suggestions from many different experts and combine them
into an overall strategy that can be implemented and managed by those struggling
with fibromyalgia.

I hope this ebook helps you to improve your fight against fibromyalgia. You will
find references to the FibroTrack application throughout this ebook and I do firmly
believe that FibroTrack can help any patient improve their self-management
efforts. But you do not have to utilize FibroTrack in order to put the concepts and
systems outlined in this ebook into action. I urge you - please - make the effort to
implement what you learn here. Knowledge without action never yields
success. Please take what you learn and put it into action.

I also need to point out that a great deal of relevant information about fibromyalgia
is not in this ebook, but is available on my website. The following 3 main sections
of the site have expandable menus to the left through which you can navigate to
hundreds of detailed articles, all based on medical research with most including
references to source research materials. My goal for our website is simple: To
provide the largest and most accurate repository of fibromyalgia information on the
Internet.

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Click these links to learn more!

What is Fibromyalgia? Fibromyalgia Treatment Fibromyalgia Symptoms

Also - Please follow my Blog.

Finally - THANK YOU. Thank you for downloading this ebook and taking the
time to read it. I truly value the trust you have placed in me by taking the time to
read the information I have put together for you.

If you have any suggestions, questions, concerns or problems that you feel I may
be able to help with, I urge you to contact me. Email:
terrycspringer@yahoo.com

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Chapter 1: Getting Started: From Confusion to Knowledge
Fibromyalgia for most patients begins with pain and confusion. Pervasive and
persistent pain appearing with no apparent cause and not responding to typical
treatments can leave the patient and care providers frustrated. Diagnostic
parameters of this disorder are poorly defined due to its inherent nature. Diagnosis
frequently boils down to the elimination of other possibilities, a process that can be
both long and confusing. No specific medical tests apply, and no established set of
symptoms exist that provide a definitive diagnosis. Confusion and doubt have been
central to fibromyalgia throughout its history.

This is our purpose: To develop an individualized treatment approach,
confusion must be replaced with understanding so that specific actions can be
focused toward the reduction of symptoms.

There is no shortage of information about fibromyalgia and its many different
treatment options. Books, websites, magazine, associations and organizations
abound on this topic.

Much of the information available online is, unfortunately, of dubious quality. The
problem is so pervasive that it triggered a research study of its own, a study that
concluded that the majority of fibromyalgia websites are deeply flawed (Click
HERE for an article on this research study). This is one of the primary motivations
behind our website at http://www.fibromyalgia-treatment.com. Our goal is provide
an online source for definitive research based articles and information related to
fibromyalgia - so of course we urge readers to use this resource.

In addition to our website, many others provide a wealth of information. We urge
those fighting fibromyalgia to use the internet as a source of knowledge and a
resource for their own research and education. Step one in any effective treatment
effort is going to be replacing confusion with knowledge. This process will of
course be ongoing, but simply initiating it is a positive action aimed in the right
direction.

Books
There have been hundreds if not thousands of books published on fibromyalgia.
Below are brief reviews of 4 favorites:

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The Complete Idiots Guide to Fibromyalgia
By: Lynne Matallana with Laurence A. Bradley
Ph.D, Stuart Silverman MD, Muhammad Yunus
MD

This is a great book. It covers a diverse battery of
information and stresses the critical importance of
developing and implementing a self-management
program. This book also covers many treatment
options, the building of a care-provider team, and
details on actions you can take to move your
treatment efforts forward.

From Fatigued to Fantastic
By: Jacob Teitelbaum MD

This book should be considered a mandatory
reference manual. Fair warning - the amount of
information presented is massive. Dr. Teitelbaum
goes into great detail on a huge variety of possible
treatment options, so much so that it can be
overwhelming. This is not the kind of book someone
is going to sit down and just read; its presentation is
complicated and at times the content can be difficult
to digest. Teitelbaum does focus on the need to
develop an individualized treatment protocol, but
while he is overwhelming in detail relative to what options are recommended, he is
a bit short in details on the management process. Despite any shortcomings though,
this book has a huge amount of detailed reference information.

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Fibromyalgia for Dummies
By: Roland Staud, MD with Christine Adamec

This is both an excellent starting point for
beginners and a great reference manual for the
seasoned warrior. Much material is covered
relative to different treatment options. Much
effort is put forth in explaining the history and
background related to fibromyalgia, and the
reader gains a solid understanding of the
struggles those suffering from fibro have faced in
having the syndrome accepted by the medical
establishment. One shortcoming in this book is
its lack of focus on the need for strong self-
management processes. The book documents a
wealth of information about treatment options, but it does not delve into
discussions about how these efforts should be integrated into an overall plan. Still,
it's a worthwhile read and good reference source.

Fibromyalgia & Chronic Myofascial Pain
By: Devin Starlanyl and Mary Ellen Copeland

This is another book that covers a huge amount
of content in a largely textbook style manner.
Information about Myofascial pain is covered in
detail, and it's very helpful given the level of co-
morbidity between these two syndromes. This
book goes into more detail concerning possible
causes and triggers, and it discusses the
relationships between causal factors at length.
The authors discuss the interactions and
complications associated with different treatment
approaches and the need for the patient to strive
to integrate treatments into a comprehensive
management strategy, but little detail is provided
on any related processes. Despite this lack, the huge amount of relevant content
and excellent supporting graphics are excellent.

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Associations and Internet Resources
Considerable resources are available to fibromyalgia sufferers, all of which provide
a multitude of information on living with and treating the disease. Several
professional associations have devoted themselves to increasing awareness of
fibromyalgia and advocating for those who suffer from it. The National
Fibromyalgia and Chronic Pain Association (NFMCPA) joined forces with the
now inactive National Fibromyalgia Association (NFA) to become the leading
nonprofit organization dedicated to the support of individuals with fibromyalgia
and other chronic pain illnesses. Their mission is to educate patients, the medical
community, the public, government, and scientists regarding the importance of
timely diagnosis and appropriate treatment for fibromyalgia and overlapping
conditions. NFMCPA is donor-supported, and members have access to a wealth of
information on their website (www.fmcpaware.org), including e-newsletters,
Fibromyalgia and Chronic Pain LIFE magazine, online discussion forums, general
information on fibromyalgia and overlapping conditions, as well as research and
advocacy updates. The NFA website also remains available to fibromyalgia
patients (www.fmaware.org) with a number of online resources still available.
Other organizations that can provide information and support to fibromyalgia
sufferers include the American Pain Foundation (www.painfoundation.org) and the
American Academy of Pain Management (www.aapainmanage.org). In addition, a
yearly conference on pain, known as PAINWeek, is held each September as an
educational opportunity for medical professionals who have an interest in pain
management.

A number of Internet-based resources are also available to those who suffer from
fibromyalgia. In addition to our website, www.fibromyalgia-treatment.com, the
online resource Co-cure (www.co-cure.org) contains helpful information for both
fibromyalgia and chronic fatigue syndrome patients, including a daily newsletter, a
message board, a list of “good doctors,” and a comprehensive review of additional
online resources. The website www.immunesupport.com is an industry-sponsored
patient education site that donates to fibromyalgia and chronic fatigue syndrome
research and advocacy initiatives. In addition, it contains a large repository of
articles, as well as message boards and support group information. Finally, the
Oregon Fibromyalgia Foundation is the website of well-known fibromyalgia
researchers Robert Bennett and colleagues (www.myalgia.com).

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Magazines and Journals
In addition to the education and advocacy these organizations provide, there are a
number of magazines and newsletters that provide fibromyalgia-specific
information and support to consumers. The NFMCPA publishes their bi-monthly
magazine Fibromyalgia and Chronic Pain LIFE, which is available for free to
registered members. Back issues are available for download on their website. The
Fibromyalgia Network, a member-supported patient-advocacy organization that
covers the latest fibromyalgia-related research and treatments, publishes both a
quarterly journal (Fibromyalgia Network Journal) and monthly eNews pertaining
to topics of interest for both fibromyalgia and chronic fatigue syndrome sufferers.
These publications are all free of advertisements. Fibromyalgia Alternative News is
an alternative health magazine devoted to exploring the underlying causes of
fibromyalgia and chronic fatigue syndrome, and is published quarterly by the non-
profit organization “Fibromyalgia Coalition International.” Other periodicals that
may be of interest to fibromyalgia suffers include magazines such as Women’s
Health, which provides information on health, fitness, nutrition, and beauty issues
of interest to women, as well as Prevention magazine. Prevention focuses on
providing information for consumers to help them lead a healthy lifestyle and
prevent disease.

In the academic world, a number of scientific journals regularly publish
fibromyalgia-related information and research. Although fibromyalgia is not a
form of arthritis and does not arise due to joint or muscle inflammation (like
rheumatic diseases do), it causes chronic pain and fatigue very similar to arthritis,
and therefore Rheumatologists are often involved in the diagnosis and treatment of
fibromyalgia. As such, many Rheumatology-focused medical journals publish
fibromyalgia-related research findings on a regular basis. Arthritis & Rheumatism
is the official monthly journal of the American College of Rheumatology, and
covers information related to diagnosis, treatment, research, and socioeconomic
issues that relate to all rheumatic diseases. Other journals include The Journal of
Rheumatology, Clinical Rheumatology, Journal of Clinical Rheumatology, and
Clinical and Experimental Rheumatology. In addition, several journals focused on
pain management regularly publish findings related to the treatment of
fibromyalgia. These include publications such as Pain and The Journal of Pain.

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Doctors, Care Providers, and Therapists
Fibromyalgia is not a form of arthritis or rheumatic disease in general, however,
rheumatologists are commonly consulted during a patient’s quest to achieve a
diagnosis. This is because the symptoms of fibromyalgia are similar to those of
rheumatoid arthritis and other chronic pain conditions of the muscular-skeletal
system. Since the diagnosis of fibromyalgia is one of exclusion, these conditions
must be ruled out. A rheumatologist is often the most appropriate specialist to do
so. In addition to rheumatologists, neurologists are becoming increasingly more
involved in the diagnosis and management of fibromyalgia, as our understanding
of fibromyalgia as a neurological condition (rather than a rheumatological
condition) continues to evolve. General practitioners and internal medicine
physicians can also diagnose and treat fibromyalgia. In addition, psychotherapists
and psychologists are an important part of a fibromyalgia patient’s care plan.
Anxiety and Depression commonly occur with fibromyalgia, and these specialists
can help patients address and manage the psychological components of the disease.

In addition to medical doctors, physical and occupational therapists can be of great
benefit to fibromyalgia patients. Physical therapy combines therapeutic exercise
with other modalities, including ultrasound, electrical stimulation and massage, in
an effort to increase flexibility and strength, reduce pain, and improve overall
mobility. Physical therapists are licensed healthcare providers specifically trained
to administer these therapies. Occupational therapists are also licensed healthcare
providers who receive specialized training related to the physical and
psychological ramifications of illnesses and injuries. They help patients who have
difficulty performing normal activities to regain functioning and independence by
modifying the environment to fit a patient’s needs.

It is important to note that for most individuals who suffer from fibromyalgia,
effective management and treatment is most often achieved through an integrated
system of pharmaceutical therapy, complementary and alternative therapies (such
as acupuncture, chiropractic, and massage therapy), dietary modifications and
supplements, and regular exercise. For those patients who suffer from anxiety and
depression, tailored psychotherapy is also crucial.

More detailed information about Doctors and Care Providers is covered in
discussions about building your individual care team in Chapters 4 and 5.

Learn more about - Medical Specialists in the treatment of Fibromyalgia.

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Support Groups
Participation in fibromyalgia support groups, whether online or in person, can also
be of benefit to patients. Support groups offer an opportunity for fibromyalgia
patients to connect with others who have the disease and gain valuable insight that
can help overcome challenges and improve their understanding of the lifestyle
changes that result from a diagnosis of fibromyalgia. Support groups also offer
emotional support, facilitate the exchange of information related to treatment
strategies, and provide a safe and understanding environment for patients who can
often feel neglected, ostracized, and misunderstood by the medical community.

It is important to understand that not all support groups are the same. Some may be
discouraging in tone, with a pervasive focus on the negative aspects of
fibromyalgia. Others may unevenly distribute member participation, with one or
two individuals dominating the meetings and the focus of the group. Therefore, it
is important for you to choose the support group that is best for you and your
fibromyalgia. Make sure you choose one that reinforces the positive factors in your
life, is constructive and caring, and encourages participation from all members.
You may need to try out a few different groups before you find the right fit for
you. You may prefer a live support group, or you may wish to test the waters with
an online support group first. For some people, using a combination of the two
may be most beneficial.

A few examples of the numerous online support communities available include:

• www.dailystrength.org
• www.mdjunction.com/fibromyalgia
• www.fibrotalk.com
• www.livingwithfibro.org

The Arthritis Foundation sponsors fibromyalgia support groups in many locations
across the United States. You can find one of these groups by visiting their online
support group directory at their website, www.arthritis.org.

The NFCPA website also offers a directory of support groups
(www.fmcpaware.org/support-groups), organized by state. Individuals who are
interested in starting a support group of their own can also visit the NFCPA
website to find information and resources to assist in the startup process, as well as
to register new support groups with the NFCPA directory.

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Support Groups and Accountability

Support groups can provide camaraderie for fibromyalgia patients, however they
should not be viewed as mere “clubs” where patients convene to commiserate
about how terrible they feel. Effective support groups will consist of highly
motivated individuals who strive to help each other through the decision making
processes that are required to progress toward achieving treatment goals. Support
groups should enable members to help each other with goal-setting, review
treatment ideas, obtain feedback and opinions on collective symptoms, and
maintain motivation during bad times. The KEY to a successful support group is
that all members maintain their accountability to each other. Like soldiers in a
foxhole, support group members are in this war against fibromyalgia together.
They should hold each other accountable, as accountability has demonstrated
effectiveness in helping people achieve a variety of goals, and it can also help
patients progress toward reducing fibromyalgia symptoms as well.

The FibroTrack
online self-
management system
includes many tools
focused on assisting
those with
fibromyalgia in
building and
participating in an
effective,
meaningful online
support group. This
includes a
sophisticated system
for matching potential support group members based on their demographic data
(age, geographic location, work situation, comorbid conditions and Fibromyalgia
symptoms). FibroTrack also facilitates support group interaction with social
networking functions, contact sharing and rating, symptoms and treatment program
sharing, private messaging and forums. The FibroTrack system has been designed
from the ground up to promote and support effective support groups.

The information presented in this ebook is merely an overview of the highlights of
these topics. Please visit our website, www.fibromyalgia-treatment.com for more
detailed information, including blogs, articles, webinars, and much, much more.

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Primary Focus

Our primary focus at www.fibromyalgia-treatment.com is all about the “How” to
do it! Information abounds on fibromyalgia, and so many treatment options are
available that the information can be confusing and conflicting if you don’t have a
trustworthy source to guide you through it all. Our website can help you pull it all
together, create a plan based on your specific needs, and then execute that plan to
work toward successful management of your fibromyalgia. The tools available to
you on our website will allow you to develop and implement an individual
fibromyalgia self-management program, a system, designed BY you (and your
team) FOR you (and your team), that is specifically targeted at treating
fibromyalgia as is manifests itself in your body and your life.

Step 1: Learn. Knowledge is the foundation of effective action. The
following articles on our website can provide the foundation of knowledge
required to get you started:

Current Diagnostic Criteria Diagnostic History of Fibromyalgia

The Diagnostic Process Multiple Diagnosis and Fibromyalgia

Fibromyalgia Medical Tests Keys for the Newly Diagnosed

Fibromyalgia Causal Theories Brain Chemical Abnormalities

Fibromyalgia and Genetics Anxiety and Fibromyalgia

Stress and Fibromyalgia Fibromyalgia Widespread Pain

Demographics of Fibromyalgia Fibromyalgia Myths

The Great Pretender Life with Fibro- A Woman's Perspective

Nothing Easy About It Online Self-Management

Symptoms Overview Internet Enhanced Treatment Efforts

Online vs Offline Treatment Treatment Focus: Symptoms or Causes?

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Chapter 2: Reviewing Fibromyalgia

History and Introduction
First observed in the nineteenth century, fibromyalgia was originally referred to as
fibrositis and fibrositis syndrome. It later was referred to as fibromyositis and
muscular rheumatism. Dr. Philip Hench coined the term “fibromyalgia” to refer to
the disease in 1976. Fibromyalgia is diagnosed by examining the severity of each
patient’s pain across 19 specific areas on the body, as well as the severity of their
associated symptoms (such as sleeping difficulty, cognitive dysfunction, and
fatigue).

Over the years, fibromyalgia has carried a legacy of negative stigma within many
realms of the medical community. Originally disregarded as a “psychosomatic”
illness, many clinicians believed that people with fibromyalgia simply imagined
their symptoms. Others believed that fibromyalgia itself was not a singular disease,
but rather a combination of symptoms from a group of related conditions. In
addition, other clinicians have refused to acknowledge the disease altogether,
considering it an illegitimate condition and simply treating each specific symptom
in the absence of a formal diagnosis. This lack of acceptance by the medical
community has made patients feel ostracized, confused, and frustrated. In addition,
this lack of acceptance has also made it difficult for patients to explain their
symptoms to family and friends. When the American College of Rheumatology
established definitive diagnostic criteria for fibromyalgia in 1990, the disease
finally received the credibility it deserved and gave patients the ability to receive a
true diagnosis. However, despite the existence of these diagnostic criteria, some
clinicians still refused to accept that fibromyalgia is a true condition and continued
to insist that its symptoms were the result of another physiologic condition or
simply psychological in nature. Despite the continuing resistance from some in the
medical community, fibromyalgia has become more widely accepted as a true
medical diagnosis, thereby enabling patients to get the care they so desperately
need and so greatly deserve.

For far greater detail relative to defining and understand the many aspects of
fibromyalgia, please refer to our website – www.fibromyalgia-treatment.com. The
sections in the primary header labeled “What is Fibromyalgia?”, “Fibromyalgia
Treatment” and “Fibromyalgia Symptoms” contain comprehensive information
related to all aspects of fibromyalgia. You will find individual articles detailing

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specific treatment options, from various pharmaceutical drugs to complementary
and alternative therapies such as acupuncture and yoga. There you can also read
detailed articles on the many symptoms associated with fibromyalgia, such as
anxiety, depression, fatigue, and morning stiffness, as well as find summaries of
the latest research surrounding fibromyalgia.

Demographics
Although fibromyalgia most often affects Caucasian women, it does not
discriminate. Anyone, including men, can get the disease. A 2005 Internet-based
survey conducted by a team of leading fibromyalgia researchers, in conjunction
with the National Fibromyalgia Association, found that of the 2,569 respondents,
96.8% were female and 91.5% were Caucasian. The average age was 47 and most
were moderately overweight. Half of all respondents had average household
incomes between $20,000 and $80,000. Click HERE for a full article on this
research study into the demographics of fibromyalgia.

Symptoms
Pain

The most common symptom associated with fibromyalgia by far is chronic,
widespread pain. The pain is often described as being deep, muscular pain as well
as pain in the connective tissues (“myofascial pain”). Individual descriptions of
pain sensations vary among fibromyalgia patients, with some describing it as
aching, throbbing, or sharp/shooting. Others describe it more as a burning or
tingling sensation.

The pain associated with fibromyalgia causes sufferers to ache all over. Certain
"Tender Points” on the body may continue to ache regardless of the therapies a
patient tries, and muscles may feel constantly overworked. The pain of
fibromyalgia can concentrate around the joints of the neck, back, shoulders, and
hips, which can make sleeping difficult and restrict mobility. Furthermore,
fibromyalgia pain is frequently made worse by changes in weather, temperature,
loss of sleep, fatigue, excessive physical activity or lack thereof, and stress/anxiety.
Fibromyalgia pain differs from acute pain (that which originates suddenly and
resolves over a period of time, such as with a broken bone), in that it is chronic,
persistent, and ongoing.

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Living with the pain of fibromyalgia is extremely difficult. It makes relaxation
problematic and interacts severely with an individual’s ability to sleep restfully.
Chronic sleep deprivation results in increased pain and aching, morning stiffness,
and daytime fatigue. Fibromyalgia pain can also make it difficult for sufferers to
maintain an active lifestyle and lead to social isolation, depression, and anxiety.

Fatigue

In addition to widespread muscle pain and aching, chronic persistent fatigue is
another hallmark symptom of fibromyalgia. It occurs in as many as 90% of
patients and can be so severe that it leads to isolation, depression, and anxiety.
Many fibromyalgia sufferers describe their fatigue as being similar to that which
occurs with the flu, truly debilitating and exhausting. Fatigue may wax and wane
as symptoms worsen or improve, however it continues to be problematic and made
worse by the sleep disturbances most fibromyalgia patients also experience.

Some researchers and physicians have observed strong similarities between the
fatigue seen in fibromyalgia patients and the condition called chronic fatigue
syndrome (CFS). CFS is a disorder marked by persistent, extreme fatigue that does
not improve, even after a person rests. In addition, a number of other symptoms are
commonly seen in CFS, including muscle pain, impaired memory, headache, sleep
problems, and painful lymph nodes. It also occurs most often in women in their
forties and fifties. Due to the strikingly similar symptoms and the high rate of
occurrence in women, CFS and fibromyalgia are often miss-diagnosed as each
other or diagnosed together in the same patient.

Sleep Impairment

Impaired sleep is another defining symptom of fibromyalgia, with as many as 85%
- 90% of patients reporting insomnia and non-restorative sleep. Patients feel
groggy and un-refreshed upon awakening. Fibromyalgia sufferers frequently report
difficulty initiating or maintaining sleep, sleep that is light or of poor quality, and
excessive daytime sleepiness. Some patients experience sudden bursts of brain
activity – known as alpha EEG anomalies – which mimic being awake when in
fact the brain should be in a state of deep sleep. These bursts of activity prevent
individuals from having deep, restful sleep. Sleep apnea is also common, and it
results when an individual stops breathing while asleep. These pauses in breathing
disrupt sleep and cause a shift from deep sleep into lighter sleep phases, all of
which culminate in poor sleep quality and a feeling of fatigue and tiredness the
next day.

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Morning Stiffness

Between 70% and 90% of individuals with fibromyalgia report waking up with
increased pain, tenderness, muscle aches, and stiffness in the morning. They may
feel as if it takes several hours for their bodies to loosen up or “warm up” before
becoming fully mobile. This obviously can interfere with mobility and limit
activity, making even the most simple tasks – such as getting out of bed,
showering, and driving into work – incredibly difficult for fibromyalgia patients.
Symptoms of morning stiffness include muscle tightness upon awakening, stiffness
particularly in the hands, fingers, feet and toes, limited range of motion in the
joints (for example, being unable to fully extend your leg), and generalized
stiffness in the back, neck and head.

Tender Points

Historically, one of the
required criteria to
receive a diagnosis of
fibromyalgia was the
presence of at least 11 of
18 specific tender points.
These 18 anatomic sites
cluster around the neck,
shoulders, chest, hips,
knees, and elbows. In
order to evaluate these
tender points, a physician
will apply light pressure
to the surface of the
muscles throughout the
body. While most
individuals will feel only
light pressure, patients
with fibromyalgia may
feel increased pain and tenderness that is disproportionate to the amount of
pressure that is applied.

The presence of myofascial “trigger points” can sometimes complicate the
diagnosis of fibromyalgia. The term fascia refers to the dense fibrous connective

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tissue surrounding muscles. When fascia is injured, it “knots up” and creates what
are known as trigger points. When touched, these trigger points are very painful
and the pain radiates throughout the muscle and surrounding areas. The chronic
muscle pain that results from these trigger points is known as myofascial pain
syndrome. The pain is persistent, worsens over time, and can result in stiffness and
difficulty sleeping. Much like fibromyalgia, myofascial pain syndrome can have a
significant negative impact on an individual’s ability to live an active lifestyle. As
a result of their overlapping features, myofascial pain syndrome may be
misdiagnosed as fibromyalgia and vice versa. What is important to understand,
however, is that trigger points for myofascial pain syndrome are not the same as
tender points in fibromyalgia. Trigger points are the underlying cause of
myofascial pain syndrome, whereas tender points are a defining symptom and at
times a diagnostic requirement for fibromyalgia. Tender points do not present an
underlying hard knot of muscle tissue as is typically present in a myofascial trigger
point. Tender points have extreme tenderness and disproportionate pain when
pressure is applied, but no hard muscular knots are present.

Headaches

The majority of people with fibromyalgia experience headaches. Migraine
headaches are common, as are tension headaches. Migraines cause severe
throbbing or pulsing in one area of the head, and may also be accompanied by
nausea, vomiting, and sensitivity to sound and/or light. Migraines may last in
duration for hours or even days. Tension headaches are typically widespread and
moderately painful, and they are the most common type of headache. They are
commonly experienced as dull, aching pain, or a sensation of tightness or pressure
along the forehead, sides, or back of the head. Tension headaches can range in
duration from as short as 30 minutes to as long as a week. For individuals with
fibromyalgia, headaches often arise for no apparent reason. They often do not
respond well to traditional headache medicines.

Cognitive Impairment / “Fibro Fog”

Individuals who suffer from fibromyalgia frequently report substantial cognitive
impairment, a symptom so prevalent is has been coined “Fibro Fog.” Fibro fog is
characterized by memory loss (both short- and long-term), difficulty maintaining
focus and paying attention, and trouble locating the right words to speak while
talking. In addition to the cognitive impairments, fibromyalgia patients may also
experience dizziness, feelings of lightheadedness, and disorientation. These

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cognitive difficulties are all very troubling for fibromyalgia patients and can fuel
feelings of anxiety and depression.

Depression & Anxiety

While many people will experience depression at some point during their lives,
fibromyalgia patients often must deal with a heavy burden of the illness. Driven in
part by the constant widespread pain and overwhelming fatigue associated with
fibromyalgia, depression may also be exaggerated by constant headaches, sleep
disturbances, and muscle pain. Depression in fibromyalgia can be very severe and
is estimated to be present in up to 30% of patients at the time of diagnosis. Those
patients who suffer from both depression and fibromyalgia have decreased quality
of life and often modify their behaviors as a result, including self-imposed social
isolation and decreased activity - actions that can feed the syndrome.

Anxiety often goes hand-in-hand with depression. Anxiety is a natural response of
the human body to stress, both good and bad. When anxiety occurs under normal
circumstances it can be beneficial to the body; however, when anxiety becomes
excessive and sustained, it can become a debilitating disorder that prevents
sufferers from carrying out normal daily activities. In addition to depression, many
fibromyalgia patients also suffer from generalized anxiety disorder – a condition
marked by sustained elevated levels of anxiety, excessive worrying, and tension,
even when no stimulus is there to trigger such symptoms. Certain physical
symptoms also accompany generalized anxiety, including fatigue, headache,
muscle aches, difficulty swallowing, and irritability. Those who suffer from
anxiety often suffer from panic attacks and unexplained feelings of inadequacy.

Irritable Bowel Syndrome

Irritable bowel syndrome (IBS) is characterized by severe abdominal cramping,
changes in bowel movements, along with a host of other symptoms. The cause of
most cases of IBS is not known, however some cases may result from an intestinal
infection or be triggered by a nerve problem. Like fibromyalgia, research has
shown that IBS may start following a stressful life event or result from the body’s
impaired ability to process pain. IBS is common and affects one out of six people
in the United States, with women affected more often than men at a rate of two to
one. The primary symptoms of IBS include abdominal pain, a sense of fullness,
gas, and bloating, and can range in intensity from mild to severe.

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When compared to the rate of IBS in the general population (10%-15%),
fibromyalgia patients experience an increased incidence of the condition. Some
researchers have estimated that as many as 70% of fibromyalgia patients have IBS.
Up to two-thirds of all IBS patients may also have fibromyalgia. Despite their
common co-occurrence, it is unknown if the two conditions are causally related or
if they merely occur together as a coincidence. Those who have both conditions
usually have more severe symptoms and a poorer overall quality of life than those
who suffer from either fibromyalgia or IBS alone.

Interstitial Cystitis

Interstitial cystitis (IC) is a condition that is marked by frequent pain or discomfort
in the bladder and pelvis. Symptoms vary from person to person and may increase
in intensity as the bladder fills with urine, and after it is emptied. In addition to
pain, people with IC may also feel the frequent urge to urinate. For women, their
symptoms may worsen during menstrual periods or vaginal intercourse. The cause
of IC is not known. But since many women who suffer from IC also have other
conditions such as fibromyalgia or IBS, some researchers think that IC is merely
the bladder’s response to a more generalized condition elsewhere in the body. The
frequent co-occurrence of fibromyalgia and IC in many patients may be due to
malfunctioning nerve signals. The fact that both conditions are much more
common in women than in men also suggests that certain genetic and/or hormonal
factors may contribute to their development.

Secondary symptoms of Fibromyalgia

A number of secondary symptoms are associated with fibromyalgia. They vary
from patient to patient so much that it is nearly impossible to provide a
comprehensive list. An abbreviated list of some of the more common symptoms is
below:

• Temporomandibular Joint Disorder (TMJ): TMJ is characterized by pain
and tenderness in the jaw joint, on each side of the head just below the ears.
TMJ can also manifest itself as dull, aching pain in the ear, difficulty
chewing, facial pain, difficulty opening and closing the mouth, or as a
clicking sensation while chewing. TMJ affects nearly 35 million people in
the Unites States, most of them are women between the ages of 30 and 50.
• Restless Leg Syndrome (RLS): RLS is characterized by the uncontrollable
urge to move the legs in order to stop unpleasant sensations. The sensations

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generally occur between the knee and ankle, although the upper leg, feet, or
arms may also be affected. Individuals who suffer from RLS generally
describe the sensations as “aching,” “creeping,” “crawling,” or “tingling”
and usually experience their symptoms at night while lying down.
• Dry mouth and eyes: Many individuals with fibromyalgia report dry eyes
and dry mouth. Sometimes these symptoms are directly related to the
condition itself, but often they are experienced as side effects to medications
used by many fibromyalgia sufferers, including antihistamines,
antidepressants, diuretics, and opiate pain medication.
• Skin rashes and irritations: Many fibromyalgia patients experience some
sort of skin-related symptoms, including dry and itchy skin and rashes.
These symptoms can make sleeping even more difficult than it already is for
fibromyalgia patients, as well as increase pain.
• Abnormally difficult and increased PMS and menstrual period pain:
Women who suffer from fibromyalgia are more likely to have greater
menstrual problems than those who do not have fibromyalgia. Increased
moodiness, irritability, fatigue, and cramping are all symptoms of PMS and
occur at higher rates and with great intensity in women with fibromyalgia.
Due to their increased sensitivity to pain, women with fibromyalgia also
experience greater pain with their menstrual periods, including pain in the
lower abdomen and back.
• Vulvodynia: Many women with fibromyalgia also experience vulvodynia,
which is a condition characterized by pain in the genital area. This type of
pain is generally described as burning, soreness, stinging, rawness, or
throbbing. It can also be marked by itching or painful intercourse. The pain
can be constant, or it can come and go, and it can last for months or years.
• Endometriosis: Women with endometriosis – a condition in which the tissue
that lines the uterus grows in other parts of the abdominal cavity – are more
likely to suffer from fibromyalgia, chronic fatigue syndrome, and diseases of
the immune system. Endometriosis causes severe pelvic pain and may cause
infertility.
• Hypoglycemia: Many individuals with fibromyalgia also experience
hypoglycemia, or low blood sugar. The symptoms associated with low blood
sugar include intense cravings for sweet foods, tremors/trembling, sweating,
panic attacks, lightheadedness, confusion, headaches, and heart palpitations.

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Fibromyalgia Triggers

The exact cause of fibromyalgia has yet to be identified, however a number of
potential causes have been suggested. Genetic factors may play a role in the
development of fibromyalgia, as the disease has been observed to cluster in
families. In addition, many individuals with fibromyalgia report having been under
extreme stress prior to the onset of symptoms. Furthermore, many people with
fibromyalgia are often overweight or obese, an observation which also may
indicate a causal association between body weight and/or diet and fibromyalgia. In
addition to these potential causes, a number of events have been suggested as
potential “triggers” that result in the development of fibromyalgia among
predisposed individuals. No definitive evidence exists, however, which links them
to the onset of the disease. These potential “triggers” include: accidents that result
in physical trauma, physical and/or sexual abuse, illness, high stress levels,
childbirth, and others.

Diagnosis

Fibromyalgia is a condition that is very difficult to diagnose. In reality, its
diagnosis is often achieved through the process of elimination. Doctors must first
rule out a number of conditions that closely mimic the disease, including chronic
fatigue syndrome, myofascial pain syndrome, and others. This often results in
confusion and frustration for patients, as they shuffle from one specialist to another
and undergo multiple tests and diagnostic procedures.

There are no laboratory tests that can be used, therefore the diagnosis of
fibromyalgia can only be achieved by physical examination, patient history, and
ruling out the presence of other similar conditions. Rheumatic diseases, such as
rheumatoid arthritis and lupus can easily be ruled out by the presence of definitive
clinical features characteristic to each condition. For example, patients with
rheumatoid arthritis experience joint swelling, joint deformities, and specific
abnormalities in particular blood tests. Patients with lupus present with rashes,
generalized and widespread inflammation, and abnormalities in specific blood
tests. Ruling out the presence of certain neurological conditions can prove to be
more difficult, as many fibromyalgia patients may report feeling numbness,
tingling, and burning sensations. However, ultimately the exclusion of neurological
conditions is easily done, as most fibromyalgia patients do not show any abnormal
findings when evaluated using standard neurological testing. The greatest difficulty
in the diagnosis of fibromyalgia occurs when attempting to distinguish it from

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other functional pain disorders, such as TMJ, irritable bowel syndrome, and
chronic fatigue syndrome. CFS and fibromyalgia have been estimated to co-occur
in as many as 80% of patients, whereas approximately 70% of fibromyalgia
patients also have irritable bowel syndrome. Approximately 40% - 70% of
fibromyalgia patients also have TMJ. As such, there is a high frequency of mis-
diagnosis, as the symptoms associated with these disorders are very subjective and
physician interpretation may vary, leading some physicians to diagnose one disease
when another might view the patient’s symptoms differently.

Moldofsky and Smythe proposed the first diagnostic criteria for fibromyalgia in
1977. These criteria included 1) the presence of at least 12 of 14 tender points and
2) non-refreshing sleep. In 1981, Yunus et al. proposed a revised, more formal set
of criteria to diagnose fibromyalgia, which required aching, pain, and stiffness for
a minimum of three months as well as the presence of at least five tender points. In
addition, Yunus et al. required patients to have at least three of the following
symptoms: decreased physical activity in response to symptoms, weather-related
symptom aggravation, stress/anxiety-related symptom aggravation, sleep
disturbances, fatigue/tiredness, anxiety, headaches, irritable bowel syndrome,
swelling, and/or numbness. Finally, in 1990, the American College of
Rheumatology (ACR) established official diagnostic criteria for fibromyalgia.
These included the presence of chronic widespread pain and a minimum of 11 of
18 tender points. In addition, the attention and endorsement by the ACR finally
gave much-needed recognition to fibromyalgia as an official clinical diagnosis.

The ACR diagnostic criteria for fibromyalgia were recently updated in 2010, in an
effort to standardize the symptom-based diagnosis of the disease and ensure that
physicians are using the same process to make a diagnosis. With this update, the
tender point test was replaced with a widespread pain index and a measurement of
symptom severity, known as the symptoms severity scale. The pain index is
determined by counting the number of areas on the body where the patient felt pain
within the previous week, and the checklist includes 19 specific areas. The
symptom severity score is determined by patients’ rating the severity of three
common symptoms – fatigue, waking unrefreshed, and cognitive symptoms – on a
scale of zero to three (with three being the most severe). Additional points can be
added for the presence of other symptoms, with a final score ranging from zero to
12. Under the new criteria, in order to receive a diagnosis of fibromyalgia, a patient
would need to have seven or more pain areas and a symptom severity score of five
or more; or, three to six pain areas and a symptom severity score of nine or greater.

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In addition to the 2010 ACR diagnostic criteria, the Fibromyalgia Impact
Questionnaire (FIQ) has often been used to help doctors evaluate fibromyalgia
patients. Developed in the late 1980s, the FIQ was first published in 1991 and has
since been translated into 14 languages. The questionnaire originally used a visual
analog scale that required patients to place a slash on a 100 millimeter-long line to
indicate the magnitude of their symptoms. Unfortunately, the questionnaire was
difficult to score. It was worded in a way that made unfair assumptions about
patients, and it failed to include important assessments of cognition, balance, and
environmental sensitivity. In 2010, the FIQ was revised to correct these
deficiencies, creating the “FIQR.” The FIQR consists of 21 questions, all of which
are based on an 11-point numeric rating scale from 0 to 10, with 10 being the
worst. The FIQR is organized to evaluate functioning, overall impact of
fibromyalgia, and symptoms.

Causal Theories

One of the main reasons that fibromyalgia is so difficult to treat effectively is the
fact that despite years of research, the definitive cause (or causes) of fibromyalgia
remain unknown. Advances in research and understanding of how the human body
transmits and processes pain signals has led to the prevailing theory that
individuals with fibromyalgia are unable to process pain signals normally.
Research suggests that this may be the result of various chemical abnormalities in
the brain. These chemicals, known as neurotransmitters, carry pain signals from
one nerve cell to the next. When the body has excess neurotransmitters, it is easier
for pain signals to reach the brain, which then relays the ‘painful sensation’ back to
the body. Recent research studies have shown that fibromyalgia patients have
disproportionate levels of pain-regulating neurotransmitters. This has led
researchers to hypothesize that perhaps the origin of fibromyalgia for some
individuals may be related to these chemical abnormalities in the brain.

In addition, relatives of people with fibromyalgia are eight times more likely to
develop the syndrome than those who have no family history of it, which is
suggestive of a possible genetic cause for fibromyalgia. Based on observational
studies in fibromyalgia and their first-degree relatives, researchers have turned
their sights to the human genome for clues as to what gene, or genes, may be
involved in the development of fibromyalgia. In particular, genes that regulate the
brain’s ability to transmit pain signals via neurotransmitters are of particular
interest to researchers.

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Chapter 3: Fibromyalgia: The Elusive Fiend
Fibromyalgia is relentless. It can wrack your body with pain and drain your energy
leaving you exhausted – physically and mentally. The ever-changing way in which
it manifests itself can confuse not only you but your doctors as well, leading to
frustration and a sense of helplessness. Fibromyalgia takes a toll on all involved –
you, your friends, and your family. It can destroy relationships, careers, and bank
accounts. Fibromyalgia is indeed a fiend, and an elusive one at that, as effective
treatment can be very difficult in light of the fact that there is no known definitive
cause to target.

Fibromyalgia presents a serious problem, and this chapter is devoted to discussing
the extreme difficulties posed by fibromyalgia relative to its diagnosis, reputation
within the medical community, and struggles with regard to the most effective
treatment approach. This chapter will also touch on Americans’ perceptions of
health care and how fibromyalgia fails to conform with what we have come to
expect in terms of treatment from our medical system.

General Confusion
Fibromyalgia is difficult to both define and diagnose, given the wide spectrum of
symptoms and co-morbid conditions that accompany it. In addition, fibromyalgia
is often misdiagnosed with other diseases that add to the confusion. For many
years, the medical community considered fibromyalgia to be a “whiners disease,”
discounting patients’ symptoms and suggesting their pain was all in the head. (that
ironically may prove to be true - research has demonstrated differences in the
chemical processes in the brains of fibromyalgia patients relative to how pain
signals are amplified and processed) Unfortunately, despite the formal recognition
of fibromyalgia as a diagnosable condition by the American College of
Rheumatology and the International Classification of Diseases, many providers
continue to doubt its legitimacy as a true pathological condition.

Adding to the confusion and confounding the medical community’s understanding
of fibromyalgia is the lack of easily defined and effective treatment strategies.
Treatment of fibromyalgia is highly individualized; there is no “Magic Pill” that
will work for everyone. What works for one patient may be totally ineffective for
another, and may even make that patient’s symptoms worse. Unfortunately, those
who are helped to a great extent by a particular therapy may celebrate the relief of

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their symptoms by telling others about their “cure,” unintentionally perpetuating
confusion about effective treatments.

The general lack of understanding surrounding fibromyalgia creates a negative
stigma about the disease and perpetuates negative attitudes toward those who
suffer from it. People tend to doubt or even fear things they do not understand, and
in the case of fibromyalgia, people’s attitudes toward those with the disease can be
doubtful, harsh, and even condescending. Given that anxiety and depression are
frequent symptoms associated with fibromyalgia, this kind of hard feedback from
friends, co-workers, family members, and even health care providers can be
crushing and can trigger new negative feedback loops.

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A Tough Nut to Crack

The reality of fibromyalgia is that there is no cure. Unfortunately, this does not
stop individuals from claiming to have found one! In addition, misdiagnosis is
rampant, both for those with and without fibromyalgia. Many individuals with true
fibromyalgia are often diagnosed as having a different disorder, while others who
are diagnosed with fibromyalgia may in fact suffer from something quite different.
Additionally, there is a very high incidence of comorbid (having additional
clinical conditions at the same time as the primary) conditions with fibromyalgia,
adding further complexity to an already complicated situation.

In addition, there is no recognized and accepted single “best treatment” – a reality
driven by the fact that even the most effective treatments have a negative impact
on a significant percentage of those who try them. The following point cannot be
emphasized enough: What may work for one patient may not work for another,
and may in fact make the other patient feel worse! This reality makes the Elusive
Fiend a moving target, and the weapons for fighting him inconsistent from one
warrior to another.

Symptom–Cause Interplay and Confusion
Many causal symptoms are associated with fibromyalgia. In other words, many of
the symptoms of fibromyalgia appear to function in a causal role, i.e., they can
both trigger fibromyalgia or appear after the onset of fibromyalgia. For example,
depression can cause
anxiety. Fatigue can cause
depression. Sleep problems
can cause fatigue. Deep,
persistent pain can cause
sleep problems. All of these
things can be both caused
by stress and can cause
stress to occur. These
symptoms also frequently
come and go, or “wax and
wane,” in seemingly random
fashion. As the course of
fibromyalgia unfolds over time, it often becomes extremely difficult for patients to
pinpoint what came first in different symptom / cause loops. In effect, a “chicken
and the egg” scenario develops which can make determining effective approaches

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to treatment difficult. This can lead to increased confusion and further escalations
in the overall negative impact on the patient’s life.

All of these symptom-cause relationships are extremely complicated and difficult
to understand. They can be impacted by a wide variety of factors, including stress,
diet, vitamin deficiencies, exercise, obesity, menstrual cycle, weather,
pharmaceutical side effects, chemical sensitivities, and environmental factors.
Determining the relationship between primary and secondary symptoms – key
causal factors and negatively-impactful environmental and life factors – can often
prove to be more complicated than calculating rocket trajectory for a NASA moon
mission. At least with NASA, the laws of physics are the same for everyone! In
fibromyalgia, there are no clinical standards; everyone’s fibromyalgia is unique.
The manner in which these factors interplay will be different for you than it is for
others.

Learn more about these frequent causal symptoms -

Anxiety Stress Depression Fatigue Sleep

Negative Feedback Loops
Many symptoms
associated with
fibromyalgia are not
isolated. They interact
with each other, feeding
off of each other in a
negative manner. This
type of relationship is
known as a negative
feedback loop. Negative
feedback can best be
described as a cycle in
which an event leads to
another event, which
leads to another event,
which leads back to the
original event and so on.
The cycle continues until something happens to make it stop. For example, an

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individual with fibromyalgia may suffer from sleep impairment. This inability to
sleep adequately results in excessive daytime fatigue. This excessive fatigue
aggravates the persistent pain that the individual experiences from their
fibromyalgia. Due to the worsening pain, the individual may not be able to sleep
well. This cycle is an example of a negative feedback loop, and will not cease until
something occurs to disrupt it. That “something” might be a new treatment regime
that incorporates massage therapy, which addresses both the fatigue and relieves
the excess pain, thereby improving sleep quality.

Causal symptoms interact both with other symptoms and other causal factors. As is
illustrated in the above example, this interaction creates, fosters, and strengthens
negative feedback loops – a scenario in which a vicious circle is created.
Furthermore, the interaction of negative feedback loops and causal factors can lead
to overlapping loops, loops within loops, or loops with shared symptoms that
impact other symptoms. The ultimate result of these interactions is a downward
spiral that may cause fibromyalgia syndrome to worsen over time. Fibromyalgia is
NOT by definition a degenerative disease, however the causal impact of
symptoms and triggers can, if left unrecognized and untreated, lead to a
debilitating downward spiral and a decline in the quality of life for the
fibromyalgia patient.

The relationship between symptoms and causal factors is multi-layered,
inconsistent in frequency and intensity, and difficult to define. All of this can lead
fibromyalgia sufferers to ask: why is the Fiend so elusive? One reason lies in the
fact that multiple negative feedback loops can function simultaneously, often with
shared causal factors. In addition, the form and function of symptomatic negative
feedback loops will vary between patients, just as symptoms will. This makes
generalizations and precise definitions relative to the overall syndrome of
fibromyalgia next to impossible. In addition, this increases patients’ confusion and
discouragement, both of which can make decisions related to treatment even more
difficult than they already are. Again, the Elusive Fiend at work.

Another fact that makes fibromyalgia so hard to pin down is that as negative
feedback loops progress, they can trigger or amplify secondary symptoms, which
in turn may lead to the formation of additional negative feedback loops. Certain
environmental factors can also serve the same function – though at times have the
opposite effect. Take Seasonal Affective Disorder (SAD) for example. Seasonal
Affective Disorder can lead to increased depression that feeds into other
symptoms, such as pain and poor sleep; however, as the seasons change and spring

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brings with it improved weather and sunshine, it can lessen the impact of SAD and
thus foster improvements in pain and sleep quality.

It is important to note that negative feedback loops are not by definition a
diagnostic criteria associated with Fibromyalgia, but rather are a commonly
observed phenomenon. Significant research relative to causal factors related to
linked conditions does provide some research evidence to support the concept of
negative feedback loops and their function as an amplifier in Fibromyalgia but
more specific research is needed.

Medical System

The U.S. medical system is highly fragmented and therefore simply not designed
to effectively diagnose and treat patients who suffer from a syndrome such as
fibromyalgia. As the diagnosis of fibromyalgia can only be achieved by excluding
the presence of other conditions, different physicians may take different
approaches to reach their diagnosis. Furthermore, if a particular practitioner is in
the school of those who doubt the legitimacy of fibromyalgia as a true diagnosis,
they may bypass a diagnosis of fibromyalgia altogether in favor of treating each
individual symptom.

A large percentage of doctors lack an in-depth understanding of fibromyalgia and
the most effective options for treating it. This frequently leads to a “generic”
approach, i.e., “throwing pills at it.” This approach is not a cure, however, and
frequently it can serve to make things worse for the patient. Pharmaceutical
options are often effective; however, even in the best case, symptoms are only
partially alleviated. Improvement is maximized if the pharmaceutical drugs can be
supplemented with other treatment options.
Another aspect of the U.S. medical system that often precludes individuals from
seeking certain treatments is health insurance. Many insurance providers do not
grant approval for certain treatments, such as chiropractic or massage therapy, and
even certain medications may not be covered by some insurance plans. Therefore,
if a particular treatment approach is not “approved” by a patient’s insurance
company it may never be discussed as an option for the patient. This can have huge
ramifications for patients who may actually receive benefit from those treatments.
A massive problem is created when insurance restrictions and required approvals
drive treatment options, rather than the fibromyalgia patient and their care team.

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Admittedly, insurance companies face an uphill battle when trying to structure a
system for the treatment of fibromyalgia in a manner that is both effective for the
patient and viable within their business model. Insurers must deal with the reality
of trying to manage the treatment and costs associated with millions of patients, all
of whom require individualized approaches and therapies. There is no question that
insurers want to be effective when approving treatments for fibromyalgia; they do.
Effective treatment is not only prudent from a patient’s standpoint, but also from a
cost standpoint. Unfortunately, the most effective proven treatment approaches for
fibromyalgia are multi-disciplinary in nature, and health insurance companies are
simply not structured to manage this kind of approach. Although some insurers
are expanding their availability of covered services to included complementary and
alternative therapies, such as acupuncture, chiropractic, and nutritional therapy,
these offerings are not universal and are by no means standard across the broad
range of insurers. Furthermore, recent economic downturns and other personal
financial factors have resulted in many individuals having to scale back on the
scope of their insurance plans. Some people forego health insurance altogether.
Without health insurance, affording good-quality, comprehensive health care in the
U.S. is almost impossible.

Insurance issues aside, doctors are in an untenable position. Due to the fact that a
multi-disciplinary approach to the treatment of fibromyalgia is typically the most
suitable, it is nearly impossible for any single health care provider to be effective in
guiding and managing a patient’s overall treatment on a long-term basis. To expect
a single doctor to be capable of this is to simply ignore the realities of both
fibromyalgia and the medical system. No doctor can be an expert in general
medicine, chiropractic, massage therapy, dietary nutrition, alternative medicine,
behavioral focused medicine and all of the many other medical specialties that can
play into treating fibromyalgia. It is not physically possible for one individual to be
the best in all of the different medical specialties that someone fighting
Fibromyalgia will want on their team. This scenario drives the reality of why a
self-management approach provides the most effective treatment. The patient must
take responsibility for directing and coordinating the efforts of all of their care
providers. Self-Management is a team approach.

As can be imagined, when coupled with the variable symptoms and the
overwhelmingly individualistic nature of the disease itself, fibromyalgia is a
nightmare for the medical system. The lack of a one-size-fits-all approach to
treatment, the need for treatments that are not often covered by routine health
insurance, and the relentless nature of the disease itself makes fibromyalgia
extremely difficult to both endure and to manage.

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"Magic Pill Syndrome"

Consumers and patients have been led to be believe – and have come to expect –
that there is a “Magic Pill” to cure almost every ailment out there. This cultural
phenomenon is
unfortunate, as it gives
many individuals a false
sense of security and an
inaccurate understanding
of how medicine truly
works. The unfortunate
reality is that medical
science and doctors are
neither as advanced nor as
capable as most
Americans believe them to
be. This is not a failure on
the part of the medical
community; it is a failure of expectations to remain aligned with reality. The
doctors on TV can cure anything (and have good hair while doing it) - so surely
my doctor should be able to make me feel better.

This is particularly the case for fibromyalgia. There is no known cure for
fibromyalgia – only treatments geared toward addressing its symptoms, and many
of those treatments are only partially effective, or effective in only a percentage of
patients. Magic Pill Syndrome leads patients to believe that one particular
medication or therapy can result in a “cure” for their disease when no such cure
exists. For fibromyalgia patients, this belief drives unrealistic expectations, feeds
depression and anxiety, and contributes to the frequent confusion and lack of
understanding among family members. These false expectations are a big issue and
a major hindrance to people with fibromyalgia, and make a very complicated
disease even more complicated to manage effectively.

It is vitally important for all fibromyalgia patients to accept the reality of their
condition in order to move forward with effective treatment. There is no “magic
pill.”

The U.S. Food and Drug Administration (FDA) recently approved the drug Lyrica
for the treatment of fibromyalgia. For many Americans who do cursory research

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and depend solely upon their doctor’s guidance with regard to treatment, they may
interpret this FDA approval as meaning that the U.S. government has certified
Lyrica as a cure and thus it is the “magic pill” they are seeking. Unfortunately, this
is not the case. Lyrica is not a cure for fibromyalgia, and for those patients in
whom it is most effective, it only decreases fibromyalgia symptoms by about 40%.
In other words, Lyrica may help, but it is certainly not a “magic pill.”

Effective Treatment - Overwhelming Options

There are many suspected causes of fibromyalgia, and they vary from patient to
patient. These variations make the identification and evaluation of overlapping
conditions extremely difficult given the time constraints modern realities place on
the medical profession.

Among the theories surrounding effective treatment strategies for fibromyalgia,
perhaps the most consistent among experts is that a multifaceted approach is most
likely to yield sustainable long-term results. Most experts agree – and research
tends to support – that the most effective treatment for fibromyalgia patients will
involve a combination of pharmaceutical therapy, dietary supplements, alternative
therapies, dietary modification, and regular exercise. It is important to note,
however, that what works for one patient may not necessarily work for another.
Furthermore, each aspect of treatment has a large number of options and no single
care provider is going to be an expert in all of them. Finally, many treatment
options present interaction challenges. Certain drugs may interact with other drugs
or dietary supplements. Dietary factors may have an impact on how the body
metabolizes and uses the drugs themselves. In addition, personal factors, such as
body weight and mental status may also play a role in the effectiveness of the
various treatments. Determining the combination of treatments that is most
effective for a particular patient involves patience, dedication, and a process of
trial-and-error.

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As noted in the
diagram to the
left - multiple
negative
feedback loops
may function
simultaneously
feeding an
ongoing decline
in overall health
that drives a
worsening of
fibromyalgia
symptoms.

Patients should
utilize diagrams
like this to chart
and document
how
fibromyalgia is
playing out in
their own
bodies. Nothing
fancy is required
- crude diagrams
hand-drawn can
serve the same
purpose as fancy computer generated graphics. The important thing is to build a
comprehensive base of understanding relative to exactly how fibromyalgia is being
presented in your individual case.

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Chapter 4: Self-Management: Basis for Effective Treatment
You are unique. So is your fibromyalgia. In fact, no one else will ever be capable
of understanding how your fibromyalgia manifests itself in your body and life as
well as you can. You are the only one who is able to effectively evaluate and
manage the treatment of your fibromyalgia, and your motivation to get better will
never be matched by anyone else. Remember: you are your own best advocate,
your own hero, and your own boss!

There are two choices when it comes to managing fibromyalgia:

1. Learn to effectively manage it yourself
OR

2. Option #2 is see option #1. No other worthwhile option exists.

Do not waste years thinking you will find a magic cure. Do not expect that your
doctors will have all the answers for you. In fact, don’t expect anyone to have all
the answers, including you, because for fibromyalgia there are few certainties. But
that is ok; many times even an intelligent guess can have great outcomes for you.

Taking Responsibility

You must take responsibility for managing your own fibromyalgia. Taking
responsibility is not just a decision; it is an action. It means taking control. The first
step in doing so is to move from a path of dependence, confusion, hopelessness,
and fear to a path of knowledge, hope, challenge, and most importantly, action.
The action part is key. Even if you have the greatest idea or concept in history, it is
worth nothing unless you act upon it. Taking responsibility means accepting the
reality that action is required and that you are the one who must do it.

This can be a breaking point for many people, as some may not feel capable of
taking action. They may doubt their ability to take responsibility and trust their
instincts. Nonsense. You can do it! No one is better equipped or prepared than
YOU. No one has better motivation, and no one will ever be in a position to better
observe, evaluate, and manage your fibromyalgia than you.

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Education - Laying the Foundation for Success

Education is the cornerstone of successful management for fibromyalgia. The more
you know, the better armed you are to tackle the many challenges you will face.
Knowledge is your primary weapon in this fight. It is important to understand how
fibromyalgia functions, its associated conditions, the treatment options available to
you, and the types of doctors you need to engage in your care.

The unfortunate reality is that a large number of comorbid conditions and
symptoms are an integral part of fibromyalgia. It is important to focus your
learning efforts on those symptoms that are specific to you, in addition to learning
all you can about the general nature of fibromyalgia. Learning all you can about
these co-occurring conditions is key to developing an individual and effective
treatment strategy.

As mentioned in chapter one of this ebook, there are a number of journals,
magazines, newsletters and national organizations that can provide you with a
wealth of trusted information regarding fibromyalgia and facilitate your
understanding of the disease and how it affects you as an individual. Magazines
such as Fibromyalgia and Chronic Pain LIFE provide regular, up to date
information on the newest management strategies, research, and tips for living with
fibromyalgia. The National Fibromyalgia and Chronic Pain Association, as well as
the American Pain Foundation and American Academy of Pain Management, all
regularly publish newsletters related to fibromyalgia and/or chronic pain.
Furthermore, these organizations have websites that also provide comprehensive
information related to fibromyalgia and pain management.

Doctors and other care providers, such as therapists, nurses, pharmacists, and
medical specialists, should also be consulted on your journey to understand all you
can about fibromyalgia. Make it a point to ask questions and engage in dialogue.
Seek out the input of these individuals and make the time to cultivate a
relationship. ASK for their ongoing help and assistance, and for them to function
as a sounding board when needed.

The Internet, while an indispensable research tool and source of information, is
notoriously inaccurate. Research has corroborated the wide availability of low
quality information found on the Internet. That said, keep the reality of
fibromyalgia in mind when sourcing information from the Internet: there is no one
proven best treatment method! Fibromyalgia manifests itself differently in each
patient. If you read a testimony online that treatment X worked for one person, be

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skeptical and understand that treatment X may not work for you. The purpose of
educating yourself is to learn about the options that you have. The Internet is a
great place for this, but be sure to validate the information.

In contrast to the Internet, face-to-face support groups allow you to see how
fibromyalgia is playing out in the lives of others who are suffering with the
disease. Since fibromyalgia support groups are comprised of individuals who are
going through many of the same trials and obstacles that you are, they can help you
to better understand your own fibromyalgia and allow you to evaluate different
treatments in context. Support groups also increase the pace of learning, as you are
able to share things with other group members.

Defining Your Fibromyalgia

Your fibromyalgia is unique. It manifests itself differently in you than it does in
other patients. From your causal factors, to your possible triggers, even your
negative feedback loops and response to treatments – all of these things define
your fibromyalgia and set it apart from the fibromyalgia other patients experience.

Inspect What You Expect

Before a condition can be effectively managed, it must be defined. It is important
to detail how fibromyalgia is present in your life, including your symptoms, the
possible causes, possible triggers, and potential patterns. The ‘definition’ of your
fibromyalgia will change over time and therefore the evaluation process will be
ongoing, however a starting point must be established.

You are the most important source of information about your fibromyalgia. You
live with your condition on a daily basis and you know its true physical and
emotional impact. Only through self-observation and self-awareness can you take
true inventory of your condition – its symptoms, complications, impact on your life
and well being, and what improves it. Focus on inspecting closely how
Fibromyalgia is playing out in your life and track what you find in a manner that
facilitates easy access to your notes and deeper evaluation.

Laying Down a Baseline

In order to effectively evaluate your fibromyalgia, it is important to begin from the
ground up. Note all of your primary symptoms. Keep track of each symptom’s
severity and write down descriptive details for each. Do not try at this stage to

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Fibromyalgia treatment guide overview

Fibromyalgia treatment guide overview

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