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
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
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
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
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
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
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
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
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
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
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
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:
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
There have been hundreds if not thousands of books published on fibromyalgia.
Below are brief reviews of 4 favorites:
The Complete Idiots Guide to Fibromyalgia
By: Lynne Matallana with Laurence A. Bradley
Ph.D, Stuart Silverman MD, Muhammad Yunus
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.
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.
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
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).
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
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.
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.
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:
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.
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.
includes many tools
focused on assisting
participating in an
support group. This
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.
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?
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
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
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.
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.
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
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.
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.
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.
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
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.
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
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.
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
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.
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 (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
• 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
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
• 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.
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.
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
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.
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.
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.
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.
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
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.
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
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
Learn more about these frequent causal symptoms -
Anxiety Stress Depression Fatigue Sleep
Negative Feedback Loops
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
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
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
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.
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
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.
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.
"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
unfortunate, as it gives
many individuals a false
sense of security and an
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
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
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
As noted in the
diagram to the
left - multiple
in overall health
that drives a
like this to chart
playing out in
fancy is required
- crude diagrams
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.
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
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.
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.
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
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
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
detail a history for how your fibromyalgia played out in the past; you are
establishing a starting point right now. Focus on what fibromyalgia is for you right
now, and how it is impacting your life. Make note of things you know for sure,
including what you have tried in the past relative to treatment and what impact it
had on you. If you have noticed that certain dietary changes seemed to help, make
note of those. If your spiritual practice helps you relax on days when symptoms are
at their worst, make note of that. If adhering to a regular schedule of both rest
periods and periods of activity reduce your fatigue, make note of that.
Note things that confuse you and any questions that you have. You may consider
drafting some basic charts or diagrams to try and help you define how you perceive
fibromyalgia to be currently working in your body and mind. Formalize this
material into an organized journal; take your time and be thorough. It may not
seem like much, but this process is actually a therapy in and of itself, and this
baseline information will form a foundation from which you can begin to measure
your ongoing progress and the effects of your treatment efforts.
Building Your Team
Fibromyalgia self-management does not mean isolated self-management! It is
important to understand that you will need a team, and you are the boss. Never
forget this and NEVER relinquish the role. This is not a job from which you can be
fired. Even if your team includes someone with advanced medical degrees, an
office full of awards, a high salary, and a hospital full of professionals reporting to
them, it will not change the fact that they work for you! You are the boss, and only
CEOs of large corporations are not experts in every skill and job that is required in
order for their company to succeed. Rather, they are experts at finding and
managing experts, and then applying the skills and knowledge from those experts
into a unified whole. This unified whole is far more capable than any of the team
members working alone. Good government works in much the same way – or fails
because of a lack of leadership skills. The President of the U.S. is not the world’s
foremost economic expert, military commander, environmental expert, research
scientist, Constitutional lawyer, and social worker all wrapped up into one. But, if
he is to be recognized by history as being a great President, then he must be an
expert at finding each of those (and many more) and pulling them together into a
team that is effective at solving massive problems and achieving lofty goals. This
is what leadership is all about. When it comes to managing your fibromyalgia,
recognize where your strengths lie. Acknowledge your primary skills, research
what skills and knowledge are required to best address your fibromyalgia, and then
seek the best individuals you can to assist you.
Once you have defined your fibromyalgia, you need to work on building your
team. An effective team will usually include your primary care physician, several
specialists, selected friends, family, and support group members. Examples of
specialists who you might find useful to have on your team are described in detail
in Chapter 5 of this ebook.
Having a support group is also an important component of your fibromyalgia
treatment. The key to a successful support group is having a two-way relationship
with your support group members; this give-and-take offers you the value of
accountability and allows you to gain insight from each other through the sharing
of your experiences.
Finally, selected friends and family members may (or may not!) be important
elements of your team. If you are fortunate to have family members who are
sympathetic to your fibromyalgia, their involvement and support can make all the
difference when it comes to successfully managing your fibromyalgia. If you do
not have a reliable and/or understanding family support system, it might be in your
best interest to exclude
those individuals from your
team. Remember, you are
the boss and it is ultimately
up to you to determine what
you need and who can best
provide it to you.
One way to maximize the
effectiveness of the role
your friends and family play
in your fibromyalgia
treatment is to place each
member in a specific role.
For example, if your spouse,
partner, or a close friend is
genuinely good at listening
and providing comforting
guidance, rely on that individual for emotional support and objective input. If you
have someone who is able to assist you with running errands, transportation for
you or your children, and housekeeping, solicit their help for those activities. For
times when you need to relax or find a distraction from your symptoms on a bad
day, have someone you can rely on to go out with you for coffee or lunch, or to a
movie or museum. Everyone’s needs are different, and you may find that you don’t
need many people to assist you; other individuals may require even more
assistance than that listed here. The point is that it is important to distribute the
responsibilities you require of your team across a number of different people, so
that no one person feels overburdened or suffers burnout.
Also, be mindful of the fact that you will occasionally make mistakes, and that
some team members will not work out. Use those times as opportunities to learn
and move on; it is ok. You should periodically evaluate the performance of your
team members. If a particular member is not contributing, replace them. Managing
your fibromyalgia is not about making friends. Note that friends were not listed as
being critical team members. This is because if you find that a team member is not
providing value to you, and is not helping you move forward toward your goals,
you need to replace them. Obviously, this is an issue that is best avoided when it
comes to friends! Remember always that your first obligation is to yourself and
your family, so assemble the best team that you can!
It is important to focus your self-management efforts on specific aspects of your
fibromyalgia. Step back, take a detailed look at your fibromyalgia, and boil it down
to targetable aspects. This will determine what goals you set for yourself and help
put you on the path to defining the strategies to meet these goals. If you want to get
from here to there, you have to know where “there” is! Specific goals are
paramount in the successful management of any complicated venture, and few
“projects” are as complicated as tracking down and stomping on the Elusive Fiend!
As you set your goals, remember to be specific and to set goals that can be
associated with actions.
Consider the following examples:
"I Want to Get Better." This is not a specific goal. It is vague and does
not clearly define a concrete outcome and the steps required to achieve it.
"I want to improve My Sleep." This is better, but there is room for
improvement to make it more actionable and specific.
"I want to get to sleep faster" and "Wake up less during the night" and
"Sleep longer each night" and "Feel more refreshed in the mornings"
and "Reduce my morning stiffness.” This is a group of five specific
goals to which actions can be tied. These goals can be reviewed in the
context of specific treatment options.
When it comes to establishing and chasing goals, fibromyalgia requires small steps
leading to incremental achievement of goals. Although it is easy to have
expectations of instant gratification, the hard reality is that this is a tough fight, and
one that will take time. One of the best things you can do for yourself is accept this
reality, plan for it, and expect it. Each if the goals mentioned above can be
measured, and success can be achieved in small, specific and measurable steps.
These small steps will build upon each other and empower you to establish and
achieve even more goals. For example, if it normally takes you one hour to fall
asleep and through actions taken on your part, you improve that time to 45
minutes, a goal has been met! Your next step would be to try for 30 minutes using
the same or a modified approach.
Become a Problem-Solver
The best way to address problems that arise in your fight against fibromyalgia is to
attack them in a systematic, defined manner. Once you have identified a problem
that you feel must be addressed, it is important to consider all possible solutions.
Recognize that some problems may have multiple causes, therefore a combination
of solutions may be the most appropriate approach to addressing them.
Once you have identified a specific symptom or grouping of symptoms, research
potential treatment options and evaluate the pro's and con's of each. When you feel
ready to try one or more of the options move forward with an action plan including
methods you will use to evaluate results. Sometimes, you may not be able to fully
understand or determine your best options. In those cases, it is important to solicit
input from the most relevant members of your team.
As you try out one or two possible solutions, be sure and evaluate their
effectiveness. Recognize that the ultimate solution to your problem in some cases
may be achieved through a combination of solutions, rather than just one solution.
Evaluating Treatment Options
Your symptoms and your causal factors should drive your treatment decisions. DO
NOT let the pharmaceutical industry or dietary supplement industry make your
treatment decisions for you, or allow them to influence you. Treatment should be
targeted at specific factors, and you are the only one who understands your specific
factors and can gauge what may work best. “Feeling better” is not a specific factor;
“Eliminating the severity of my insomnia” is a specific factor.
When you evaluate a particular treatment option, make specific notes about what
you hope to get out of it and which aspects of your fibromyalgia you expect to
improve. Make note of multiple areas where it may have an impact and evaluate
how this impact can potentially affect other symptoms. In addition, be sure to use
your team! Review what you are evaluating and considering with the team
members who are most appropriate for that particular goal. Ask for their opinion
and input, but always remember to ask WHY they have their particular opinion. Do
not let a team member’s personal bias influence your decision-making.
It is also important to ask yourself the following questions:
“What are the negative possibilities?
“What potential side effects should you be watching out for?”
“What possible negative interactions with other treatments should I be on the
“How likely are these and what is the worst case scenario?”
“How might this impact my life overall?”
"How much is this going to cost?"
"What are my specific goals relative to outcomes associated with this
Case Studies -
Fred has been diagnosed with fibromyalgia though he knows little about what
that means. Fred is prescribed Lyrica by his primary care physician because
that is what the doctor has read should be effective, he has little actual
experience with either the drug or fibromyalgia. Fred does not ask why or
question this, but rather happily accepts it and takes it expecting it to cure his
symptoms. Fred's fibromyalgia is largely defined by severe fatigue, deep
muscular pain and cognitive impairment including dizziness and
disorientation. Among the most common side effects of Lyrica are drowsiness
and dizziness - things likely to be severe if present in Fred given his
symptoms. Fred is a truck driver, he begins taking Lyrica the same day his
doctor prescribed it, and he immediately heads out on a long haul truck trip.
Double Ooooops. Fred may be in for some problems!
Mary has evaluated her fibromyalgia at length, consulted her primary care
physician and sleep specialists along with her nutritionist and massage
therapist plus 3 members of her online support group. She has identified
pervasive sleep impairment as a key causal symptom potentially driving her
fatigue and dizziness along with her depression and tender point pain. Mary
had decided to forego Lyrica or other prescription medications for now in
favor of a combination approach (though she may test Lyrica in the future).
She is utilizing Ribose and Acytel-L-Carnitine in the mornings to increase her
energy, she is doing water walking as a safe exercise, she is eliminating
caffeine and most gluten from her diet. She is also beginning to test different
dietary supplements at night to improve her sleep including melatonin, kava-
kava, and passion flower. Mary has written down the possible side effects of
the dietary supplements she is planning to take so she can be aware of what
may be causing any problems she experiences. She is tracking in her pain
journal all of her symptoms and keeping notes relative to how her exercise
and diet efforts are progressing.
Fred has not properly evaluated his treatment options - Mary has. Lyrica may in
fact work out great for Fred and Mary may have a bad reaction to Kava. However,
the odds are in Mary’s favor over the long run. This is because Mary understands
her fibromyalgia, the options available to her, and she is using her knowledge to
manage her approach to treatment. Fred is unconsciously abdicating the
management of his fibromyalgia to someone else – his doctor – and is falling
victim to “magic pill syndrome.”
All of the self-management steps we have defined so far lead to self-
empowerment. They enable you to set goals for yourself and take educated and
calculated steps toward achieving those goals. These steps are not only a necessity
and a prerequisite for developing and managing an effective treatment approach,
but they are also a positive feedback loop and embody an effective treatment. You
can think of it like this:
Empowerment less depression less anxiety reduced stress reduced
symptoms Success Demonstrated Empowerment
Responsibility + Education + Care Team + Goals + Treatment Evaluation =
When you are empowered, you minimize the negative impact of causal emotions
by relying upon a systematic self-management approach that reduces confusion
and feelings of hopelessness. It also provides self-encouragement and reassurance
that you can do this! Not knowing or fully understanding “what” to do and “how”
to do it are major factors that can undermine your ability to take action to achieve
your goals. Without action, nothing is possible. Self-management drives
empowerment through implementing a systematic approach. While it is important
to understand that not every treatment approach is going to yield positive results,
(in fact - most initiatives will yield no results at all) it is equally important to know
that every treatment approach will yield data, and data compiled over time yields
knowledge, which ultimately drives success. You should understand that failure is
expected and is part of the systematic process you must use to address your
fibromyalgia. Remember - a baseball player who is a complete failure with the bat
7 out of 10 times he tries to hit the ball has a future in the "Hall of Fame" if he can
fail this consistently over a long career!
Successful self-management must rely upon a systematic approach. This is true not
only for successful companies, militaries, and rulers, but for the Elusive Fiend as
well. Understanding the critically important role that self-management plays in
treating fibromyalgia is key; however, always remember that self-management
without a systematic approach is a half-measure.
You MUST HAVE a well-defined and supported system for executing and
managing your self-management program. (Chapter 6…)
Chapter 5: Treating Fibromyalgia: What you need to know
This chapter is devoted to a discussion about the core aspects of treatment options
available to you. It is important to understand that this is by no means a
comprehensive, definitive, and exhaustive listing of all treatment options available;
it is merely meant to provide you with a starting point and steer you in the right
direction. The truth is that potential treatment options are numerous, and the
process of elimination to determine which one(s) are the most effective for you
will be as individual as your fibromyalgia. As you read through these pages,
understand that this is nothing more than a summary, meant to serve as a primary
guide to help start you on your journey of learning about the treatment options
available. It is well beyond the scope of this eBook to dig deeply into all of the
possible treatment approaches. You can visit our website, www.fibromyalgia-
treatment.com for a much more information on this.
It is important to assemble a well-rounded team of individuals to assist with your
treatment. Your team will invariably include one or more medical specialists.
With so many physicians out there, searching for one who is compatible with your
needs, and who is also sympathetic toward and understanding of fibromyalgia may
seem like a daunting task. Fortunately, there are resources available to assist you
with your search. One way that you can start the process is to talk with fellow
fibromyalgia patients; support groups are a great resource for this. Examples of
online support groups as well as websites that contain directories of local support
groups can be found in Chapter 1. In addition, some local chapters of the Arthritis
Foundation offer physician referral lists for patients with fibromyalgia. The
following are additional resources for locating physicians:
• “Good Doctors” list at Co-Cure: www.co-cure.org/Good-Doc.htm
• The FMS Community website:
• FibroTrack Care Provider Database with patient reviews and ratings.
In order to build the most effective team, it will be important for you to screen and
interview potential members to ensure that they have not only the right skills to
contribute to your team, but the right attitude and understanding about
fibromyalgia. When you meet with a medical specialist, be sure to ask for
examples of success stories of former patients with fibromyalgia whom they have
treated. In addition, ask them to discuss different treatment options they have used,
and what the outcomes of those treatments were, along with any additional
observations they made along the way (side effects, tolerability, patient feedback,
etc.). Be sure to ask them what they think of the various alternative therapies that
have been researched in relation to fibromyalgia – such as acupuncture,
aromatherapy, and chiropractic.
When getting to know a new care provider, it is critical to not only evaluate their
knowledge relative to treating fibromyalgia, but to also consider their general
attitude and willingness to accept you as an engaged and active leader of your own
care provider team. Take the time and make the specific effort to engage doctors
and specialists in discussions about your approach to self management. Make sure
they are willing to take the time to explain to you the logic and research behind
why they recommend different treatment options. Make it clear that you wish to
not only benefit from their expertise through their own opinions, but also through
their providing feedback relative to your opinions and ideas. Communication and
evaluation must be a two way channel.
One medical specialist that should be included on your team is a primary care
physician. This can be an internal medicine doctor or a family medicine doctor.
When choosing a primary care physician, it is vitally important that you find
someone who is willing to listen to your concerns, ideas, and opinions, and who
will take your input seriously. They must accept that you are the leader of your
fibromyalgia management team. Be sure and choose a primary care physician who
has experience with fibromyalgia patients, and who is knowledgeable of strategies
to manage breakthrough pain.
The following is a non-exhaustive list of other medical specialists who you may
wish to include on your team, along with a description of what they treat and
various aspects of fibromyalgia that they may be helpful in managing.
• Rheumatologist: Rheumatologists are internal medicine physicians who
have received additional training in the diagnosis and treatment of arthritis
and other diseases of the muscles, joints, and bones. They commonly treat
arthritis, autoimmune diseases, pain disorders, and osteoporosis. Many
individuals with fibromyalgia may see a rheumatologist early in the course
of their diagnosis in order to rule out arthritis and other musculoskeletal pain
disorders. Since rheumatologists are specially trained to treat patients who
have chronic pain conditions, they are often an integral part of a
fibromyalgia patient’s treatment team.
• Psychiatrist: Psychiatrists are medical doctors who specialize in the
prevention, diagnosis, and treatment of mental illness. They also monitor the
effects of mental illness on other physical conditions, including heart disease
and high blood pressure. Psychiatrists are well-trained to help patients who
are suffering from depression and anxiety, both of which are extremely
common among fibromyalgia patients. As medical doctors, psychiatrists can
write prescriptions for medications that may be useful to fibromyalgia
patients in managing their depressive symptoms.
• Psychologist: Psychologists are specialists who have received extensive
post-graduate education in the assessment, diagnosis, treatment, and
prevention of mental disorders. While not permitted to prescribe medication,
psychologists treat patients through other means, including talk therapy,
cognitive behavioral therapy, and behavior modification techniques.
Psychologists can be instrumental in the care regimen of patients who are
suffering from depression and anxiety by helping them recognize events that
trigger or worsen their depression, and by identifying ways to cope with
symptoms. Like psychiatrists, psychologists can be a vitally important part
of a fibromyalgia patient’s care team.
• Neurologist: Neurologists are medical doctors who specialize in the
diagnosis and treatment of diseases that affect the nervous system. Like
rheumatologists, neurologists are often one of the first specialists seen by
fibromyalgia patients on their quest for a diagnosis, as certain neurologic
diseases must be excluded. In addition, the current understanding of
fibromyalgia among many experts is that it results from the body’s inability
to process painful stimuli correctly. Since nerves are the means by which the
body transmits and processes pain, neurologists are often integral members
of a fibromyalgia patient’s team.
• Chiropractor: Chiropractors are specially trained practitioners who focus on
treating musculoskeletal and nervous system disorders. Chiropractors are not
medical doctors, however they must complete four years of post-graduate
training in a chiropractic college and pass both national and state licensing
exams. Chiropractic care is commonly used to treat back and neck pain, joint
pain, and headaches. Although research surrounding the usefulness of
chiropractic care as a treatment for fibromyalgia symptoms is conflicting,
some patients do find that chiropractic care improves their symptoms.
• Massage therapist: Massage therapists are specially trained practitioners
who use therapeutic touch and pressure applied to muscles in order to relieve
pain, rehabilitate injuries, reduce stress, provide relaxation, and relieve
anxiety and depression. For fibromyalgia patients, massage therapy may be
useful to help reduce pain and promote relaxation in an effort to improve
depression and anxiety.
• Occupational therapist: Occupational therapists are specially trained,
licensed healthcare providers who assist individuals who are experiencing
difficulty with activities of daily living. They receive detailed training
related to the physical and psychological difficulties associated with illness
and the effects that these have on people’s ability to perform everyday
activities. Occupational therapists modify an individual’s environment to fit
their changing needs. This can obviously be beneficial to fibromyalgia
patients, who are frequently forced to change the way in which they live as a
result of the persistent pain they endure. Occupational therapists can help
fibromyalgia patients modify their homes to better accommodate the
physical limitations they face, which can result in improved symptom
• Dietitian: Registered dieticians are healthcare professionals who apply
principles of food and nutrition to health and human functioning. They hold
nutrition-related degrees that include studies in biochemistry, human
anatomy, and physiology. They are also required to complete dietetic
internships of at least 900 hours. In addition, dietitians are required to pass
national board exams. Dietitians can be useful to fibromyalgia patients who
suffer from many common co-existing symptoms and diseases, such as
irritable bowel syndrome, obesity, and interstitial cystitis.
• Physical therapist: Physical therapists are licensed healthcare professionals
who are trained in the diagnosis and treatment of movement disorders. They
work with patients to improve the body’s functioning by restoring mobility,
reducing pain, and preventing disability. Since fibromyalgia patients
frequently suffer from decreased mobility as a result of their chronic
widespread pain and stiffness, a physical therapist can be helpful in teaching
patients how to overcome physical challenges they face.
• Naturopath: Naturopathic doctors focus on the holistic and proactive
prevention of disease, as well as comprehensive diagnosis and treatment.
Naturopathic physicians (N.D.) attend four years of post-graduate
naturopathic medical school, during which they are educated in all of the
basic sciences as medical doctors (M.D.); however, their studies also include
education related to holistic and nontoxic therapeutic approaches, with an
emphasis on disease prevention and the optimization of wellness. They are
also required to complete four years of training in clinical nutrition,
acupuncture, homeopathic medicine, botanical medicine, psychology and
counseling, and they must also pass professional board exams. Naturopathic
doctors may be useful members of a fibromyalgia patient’s treatment team.
• Holistic medicine practitioner: Holistic medicine focuses on addressing
care of the whole person – body, mind and spirit. It integrates both
conventional and alternative therapies in an effort to foster optimal health
and wellbeing, and to prevent disease. Holistic medicine practitioners are
useful to fibromyalgia patients because they focus on patient care in terms of
the unique needs of the patient, rather than through a one-size-fits-all
approach. The practitioner-patient relationship is viewed as a partnership
that encourages patient input and needs. This individualized, attentive
relationship can be of great benefit to fibromyalgia patients, as the disease
itself is unique on the individual-level and requires a patient-directed
approach to treatment.
As stated above, this is by no means a comprehensive list of medical specialists.
There are many other medical disciplines. It is important to approach the building
of your team with a receptive and inquisitive mind. Talk to others, get input and
advice, and get creative. Fibromyalgia is an unique disease that requires a unique
approach to treatment; have an open mind!
Create a Partnership with your Physician
When you have found a physician who meets your needs and who you feel is a
good fit for your team, it is important to develop a productive relationship with him
or her. The time limitations many doctors face when seeing patients – due to
overloaded schedules, high patient-to-physician ratios, and other limited resources
– underscore the need for you to be as prepared as you can at each appointment.
Below are a few tips to help you accomplish that:
1. Prepare an agenda before your appointment. Know what you want to
accomplish at that particular appointment. Do you need a diagnosis or an
explanation of a new symptom? Do you need medication? Do you need
paperwork signed by the doctor.
2. Rehearse a brief but comprehensive description of your symptoms and
situation before you visit the doctor so that you waste no precious time
getting his or her input and assistance. Review your journals and notes and
prepare which sections need to be shared. Take your journals and notes with
you so your care provider can review them.
3. Take an active role in your appointment. Describe your symptoms and
concerns quickly and articulately. For example, you might say “Dr. Mills, I
am here today because I’ve noticed my fatigue worsening. I’m worried that
my exercise regimen may be affecting it, however my pain is much
improved since I began exercising. I would like to discuss what options I
might have to address my fatigue without sacrificing the pain relief I get
4. Present to your doctor your ideas and theories about new treatment
initiatives that you have researched and are interested in trying. Discuss the
specifics of what you wish to try, why it appeals to you, research you have
done into possible effectiveness, side effects, risks and problems. Share the
thoughts from other care team members about your ideas. Make sure to
express the value you place on your doctors thoughts relative to your own
5. As you converse with your doctor, be sure to leave the appointment with
some concrete answers to key questions. Ask, "what is your diagnosis (i.e.,
what’s wrong?); what is your prognosis (i.e., what is the outlook?); what
tests (if any) are needed; what treatments (both medical and behavioral) are
advisable, and when you should return for a follow-up visit?"
6. To make certain that you understand all that your doctor has told you, repeat
back to him or her they key points they have told you. For example, you
might repeat back that you understand that the doctor recommends you
break up your exercise regimen into three 15-minute increments each day,
rather than exercising for 45 minutes at a time.
Three prescription drugs have now been approved by the U.S. Food and Drug
Administration (FDA) to treat the symptoms associated with fibromyalgia: Lyrica,
Savella, and Cymbalta. This next section will briefly describe these medications;
for more detailed information on each, please refer to our website,
Lyrica (pregabalin) is manufactured by Pfizer, Inc. and is approved by the FDA to
treat neuropathic pain (pain that results from damaged nerves), pain due to
shingles, and fibromyalgia pain. It can be also used to treat seizure disorders such
as epilepsy. The means by which Lyrica works to treat fibromyalgia is not
understood, however it is believed that it works by calming overactive nerves.
Although Lyrica does not work for everyone with fibromyalgia, many patients
have seen improvements in pain, sleep quality, and overall functioning.
Lyrica is taken as a capsule two to three times per day, usually at a dose of 300 to
450mg per day. The most common side effects of Lyrica include dizziness,
headache, dry mouth, nausea, vomiting, constipation, gas, bloating, elevated mood,
difficulty speaking, difficulty concentrating, confusion, forgetfulness, anxiety, loss
of balance and/or coordination, twitching, increased appetite and/or weight gain,
swelling of the arms and legs, and back pain. Allergic reactions are also possible,
although rare. Individuals who have diabetes, women who are pregnant or nursing,
or individuals on certain medications to treat high blood pressure should use
caution when taking Lyrica.
Savella (milnacipran) is manufactured by Forest Pharmaceuticals, Inc. and is
another FDA approved drug for treating fibromyalgia pain and improving overall
functioning in fibromyalgia patients. While it cannot help everyone with
fibromyalgia, Savella may help some individuals feel less pain and achieve
improvements in overall functions.
Although it is not used to treat depression, it is in a class of medications that are
commonly used to treat depression, known as selective serotonin reuptake
inhibitors, or SSRIs. As such, Savella works by increasing the amount of chemicals
that help stop the transmission of pain signals in the brain. SSRIs can cause
unexpected changes in mood, particularly in younger patients, so it is important to
understand that that your mental health may change in an unexpected way when
you begin taking the drug. It is important to communicate any changes to your
doctor immediately, and to make your family and other support group members
aware of this potential risk.
Savella is taken in tablet form once or twice a day, preferably with food to
minimize the risk of stomach upset. The most common side effect associated with
Savella is nausea, however other side effects may include headache, constipation,
dizziness, insomnia, hot flushes, excessive sweating, vomiting, heart palpitations,
increased heart rate, dry mouth, and high blood pressure. Your blood pressure will
need to be monitored by your doctor on a regular basis while taking Savella.
Savella should not be taken by individuals who are currently taking medications
known as MAOIs, or by those who have uncontrolled glaucoma (increased
pressure in the eye). It is also important to let your doctor know if you have high
blood pressure or any heart disease, liver or kidney problems, current or previous
manic episodes or seizures, bleeding disorders, or are pregnant or nursing.
Cymbalta (duloxetine) is FDA approved for the treatment of depression and
generalized anxiety disorders, diabetic neuropathy (pain associated with diabetic
nerve damage), and fibromyalgia pain. It can also be used to treat persistent bone
or muscle pain from conditions such as osteoarthritis. Like Savella, Cymbalta is an
SSRI and therefore works by blocking the transmission of pain signals in the brain.
When taken to treat fibromyalgia, Cymbalta is taken once a day as a long-acting
(delayed-release) capsule. It is important that you do not crush, split, or chew the
capsule; it must be taken whole. In addition, Cymbalta takes time to take effect, so
the full benefit may not be felt for up to four weeks. Common side effects include
nausea, vomiting, constipation, diarrhea, heartburn, stomach pain, decreased
appetite, dry mouth, increased urination, sweating, dizziness, headache, weakness
and/or tiredness, drowsiness, changes in sexual desire or ability, and uncontrollable
shaking. Like Savella, individuals who take MAOIs should not take Cymbalta.
Furthermore, certain blood thinners, antidepressants, diuretics and a variety of
other medications can also interfere with Cymbalta, so it is crucial that you tell
your doctor every medication and nutritional supplement you are taking or plan to
take. Also tell your doctor if you are pregnant or plan to become pregnant, as
Cymbalta can have adverse effects on the fetus.
“Antidepressants” is a broad term used to describe a class of drugs commonly used
to treat depression, anxiety, mood disorders, bipolar disorder, and other mental
health problems. They work by increasing the body’s production of chemicals
known as neurotransmitters. These chemicals transmit nerve signals within the
brain and have effects on both emotions and pain reception.
There are four main types of antidepressants:
• Tricyclic antidepressants (TCAs): Among the first antidepressants used to
treat depressive disorders, they primarily target two specific
neurotransmitters in the brain: norepinephrine and serotonin. Although
effective, they tend to cause a considerable number of side effects and are
typically not used as a first line of treatment. Examples of common TCAs
include Anafranil, Elavil, and Tofranil. Common side effects include dry
mouth, vision disturbances, increased fatigue, weight gain, tremors,
constipation, bladder problems, daytime sleepiness, increased heart rate, and
• Monoamine oxidase inhibitors (MAOIs): Another early class of
antidepressants, they are most effective when used to treat people with
depression who have not responded to other treatments. Unfortunately,
MAOIs interact with substances in many foods and beverages, as well as a
considerable number of other medications. As a result, patients who take
MAOIs are limited to strict diets and medication regimens. Common
examples of MAOIs include Parnate, Nardil, and Marplan. Side effects can
be serious and include headache, racing heartbeat, chest pain, neck stiffness,
nausea and vomiting. Certain foods and medications must also be avoided to
prevent dangerous interactions.
• Selective serotonin reuptake inhibitors (SSRIs): These are a newer class of
antidepressants and they work by modifying the available amount of the
neurotransmitter serotonin in the brain. Some of the more common examples
of SSRIs include Prozac, Zoloft, Paxil, Lexapro, and Celexa. Many patients
treated with these medications will experience sexual problems (such as low
sex drive or inability to orgasm), however such problems are reversible.
Other side effects include dizziness, headache, nausea, insomnia, and a
• Serotonin and norepinephrine reuptake inhibitors (SNRIs): Also a newer
class of antidepressants, SNRIs increase the availability of serotonin and
norepinephrine in the brain. Examples of SNRIs include Effexor, Remeron,
and Cymbalta. Common side effects include drowsiness, blurred vision,
feeling lightheaded, strange dreams, constipation, fever and/or chills,
headache, changes in appetite, tremors, dry mouth, and nausea.
Prescription Sleep Medications
A number of prescription sleep medications are available for individuals who have
difficulty falling or staying asleep (a condition known as insomnia). However, it is
important to understand that if an underlying condition is causing the insomnia –
such as fibromyalgia – treating that condition itself rather than treating the
symptom of insomnia can ultimately be much more effective. Unfortunately that
cannot always be achieved, as the Elusive Fiend can at times be difficult to
manage, therefore making restful sleep next to impossible. In such instances,
prescription sleep medications may be of benefit.
There are generally two types of prescription sleeping pills: those that help you fall
asleep easier, and those that help you remain asleep for a longer period of time.
Drugs that help you fall asleep include Lunesta (eszopiclone), Rozerem
(ramelteon), Halcion (triazolam), Sonata (zaleplon), and Ambien (zolpidem).
Drugs that are commonly prescribed to help you stay asleep include ProSom /
Eurodin (estazolam), Lunesta (eszopiclone), Restoril (temazepam), Ambien CR
(zolpidem), and Silenor (doxepin). In general, many of these drugs may interact
with other medications, be habit forming, or can become less effective with
prolonged use. Each drug has specific nuances that may make it a better choice for
one person over another, so it is important to discuss each option with your doctor
and decide which, if any, is best for you.
The most common class of anti-anxiety medications those drugs known as
benzodiazepines. While antidepressants are generally used over a long period of
time to continuously treat and control depression and anxiety, benzodiazepines can
begin working more quickly and therefore are ideal for short-term use in specific
situations or in response to symptomatic episodes. Examples of benzodiazepines
that are commonly used to treat anxiety include Klonopin (clonazepam), Ativan
(lorazepam), and Xanax (alprazolam). The most common side effects of
benzodiazepines include upset stomach, blurred vision, headache, confusion,
grogginess, and nightmares.
Analgesic is the medical term used to describe any drug that is used to relieve pain.
There are a wide variety of prescription analgesic medications available for pain
management in fibromyalgia and other pain disorders. The following is a brief
overview of selected examples:
• Narcotics: The most
powerful type of pain-
relieving medication is a
class of drugs known as
decrease pain by working on
pain receptors found on the
nerve cells themselves.
Common examples of
narcotics include Tylenol
with codeine, Lorcet,
Lortab, Vicodin, Morphine,
and Percocet. Excessive use
of narcotics with other pain medications that contain acetaminophen (for
example, Tylenol) can result in serious liver damage. In addition, narcotics
can be very habit-forming, in addition to causing constipation, drowsiness,
dry mouth, and difficulty urinating.
• Anticonvulsants: Anticonvulsants are medications generally used to treat
seizure disorders such as epilepsy. However, several have been shown to
have analgesic properties as well, including Tegretol (carbamazepine),
Neurontin (gabapentin), Trileptal (oxcarbazepine), Lyrica (pregabalin), and
Topamax (topiramate). Scientists do not fully understand how these
anticonvulsants work to reduce chronic pain, but it is thought that they may
actually disrupt the transmission of pain signals in the brain. The most
common side effects of anticonvulsant medications include headache,
dizziness, drowsiness, fatigue, confusion, skin rash, nausea, vomiting, loss
of appetite, abdominal pain, weight gain or loss, and swelling of the feet.
• Muscle relaxants: Muscle relaxants are medications that control muscle
spasms by depressing the central nervous system. They have a sedative
effect on the body. In addition to calming muscle spasms, they can also
relieve pain in some people. Examples of muscle relaxants include Soma
(carisoprodol), Flexeril (cyclobenzaprine), Valium (diazepam), Skelaxin
(metaxalone), and Robaxin (methocarbamol). They are not recommended
for use by pregnant women, older adults, or those individuals with a history
of depression or drug/alcohol addiction. Common side effects include
drowsiness, dizziness, possible addiction, dry mouth, and urinary retention.
To avoid the risk of developing dependence, muscle relaxants should be
used only on a short-term basis.
• Anti-depressants: Although they have not been approved by the FDA to
treat chronic pain, many antidepressants are commonly used to treat chronic
pain conditions, such as fibromyalgia even when the patient does not have
depression. Antidepressants have been shown to work best for pain that is
caused by arthritis, nerve pain resulting from diabetes or shingles, migraine,
fibromyalgia, low back pain, and pelvic pain. The way in which
antidepressants treat the pain associated with these conditions is not
understood, and it generally takes several weeks to achieve maximum
results. The most effective group of antidepressants used for this purpose is
the tricyclic group, which includes drugs such as Amitriptyline, Tofranil
(imipramine), Anafranil (clomipramine), Pamelor (nortriptyline), and
Norpramin (desipramine). Side effects commonly associated with the use of
these medications include blurred vision, drowsiness, dry mouth,
constipation, weight gain, difficulty urinating, and changes in blood
• Over-the-counter options: Common over-the-counter (non-prescription)
pain medications, such as Tylenol (acetaminophen), Advil (ibuprofen),
Aleve (naproxen), and aspirin. These are not specifically designed to treat
fibromyalgia, but can be used to treat associated symptoms, such as
headache and joint pain. Ibuprofen, naproxen, and aspirin can cause stomach
upset, and all (with the exception of aspirin) can interfere with blood
Coping Strategies for Pain
It is important to have a variety of tools under your belt to help you cope with the
pain associated with fibromyalgia. As your pain changes from one day to the next,
so will your coping strategies. It is important to be flexible and open to a variety of
options to help you better manage your pain. It is also important to remain positive
and use your support network – friends, family, doctors, whoever you feel is the
most appropriate person at that time – to lean on. Ask for help when you need it.
Distractions that divert your attention away from your symptoms are important
coping mechanisms. Examples of distracting activities might include watching a
funny movie, reading a short book, visiting with friends, engaging in a hobby you
enjoy (if you can do so without aggravating your symptoms), or taking a slow,
easy walk in a nice park. In addition, relaxation techniques can also be of
tremendous help. Deep-breathing exercises, progressive muscle relaxation,
meditation, yoga, and visualization can all be beneficial.
As with all aspects of fibromyalgia management, not every coping strategy will
work for everyone, therefore it is important to remain open-minded, patient, and
willing to explore a variety of options while searching for those that will become
your mainstays for coping.
A number of dietary supplements have been investigated as potential treatments for
symptoms associated with fibromyalgia. Some have proven to be more effective
than others, and effectiveness varies between individuals (i.e., what may be highly
effective for one individual may have no noticeable effect in another). It is
important to note too that dietary supplements may adversely interact with
medications you are taking, so be sure and tell your doctor if you plan to use a
dietary supplement so that you can be aware of any potential risks.
The list provided below is meant to provide an overview of the main dietary
supplements commonly investigated and associated with the treatment of
fibromyalgia. It is by no means exhaustive, as there are literally hundreds of
possible supplements one could try. It is beyond the scope of this eBook to provide
detailed, in-depth information about each one. Also, more detailed information on
these and other supplements can be found on our website, www.fibromyalgia-
• 5HTP: 5-HTP (5-
hydroxytryptophan) is a
produced in the body as a
by-product of the amino
acid L-tryptophan. It can
also be produced
synthetically from the
seeds of the African plant
known as Griffonia
works by increasing the body’s production of a chemical known as
serotonin. 5HTP is a widely available dietary supplement that has been used
to treat a variety of symptoms and conditions that affect individuals with
fibromyalgia, including sleep disturbances, depression and anxiety,
migraine, and chronic widespread pain. However, the National Institutes of
Health advises consumers to refrain from using 5HTP until more is known
about the supplement, as it has been linked to serious side effect known as
eosinophilia-myalgia syndrome, or EMS. EMS is characterized by severe
muscle tenderness and increased levels of white blood cells. Other potential
side effects of 5HTP include heartburn, stomach pain, vomiting, nausea,
diarrhea, drowsiness, and sexual problems.
• Ribose: Ribose is a kind of sugar naturally produced by the body. In its
supplement form, it has been used to increase muscle function recovery,
improve athletic performance, and replenish muscle energy stores. It has
also been used to help prevent muscle cramping, pain, and stiffness in
patients with various disorders of the musculoskeletal system. Although
some people have used it as a treatment for fibromyalgia, there is little
research available to support its use for such purposes. One study has
demonstrated that ribose, taken three times per day, can improve energy,
sleep, and decrease pain in fibromyalgia, however more research is needed
to corroborate these findings.
• Acetyl-L-carnitine: Acetyl-L-carnitine is a naturally-occurring amino acid
that helps the body produce energy. It has historically been used to treat
mental disorders, such as Alzheimer’s disease, memory loss, depression,
alcoholism, and thought problems related to Lyme disease. There is limited
information available regarding the use of acetyl-L-carnitine to treat the
symptoms associated with fibromyalgia, however for those who suffer from
cognitive dysfunction (“fibro fog”) and anxiety/depression, it may be of
benefit. Side effects are generally mild and include stomach upset, nausea,
vomiting, and restlessness. It can also cause urine, breath, and sweat to have
a “fishy” odor. Acetyl-L-carnitine should NOT be taken while concurrently
taking a blood thinner such as Coumadin (warfarin) or Sintrom
• Magnesium / Malic Acid: Magnesium is the most abundant mineral in the
body and is found predominantly in the bones. Magnesium is required for
over 300 biochemical reactions in the body, among which include
maintaining normal muscle and nerve function. Magnesium supplements
have been used for a wide variety of purposes, ranging from digestive health
to cardiovascular health, as well as anxiety, chronic fatigue syndrome,
restless leg syndrome, and urinary problems. Some evidence also supports
the use of oral magnesium supplements, taken along with malic acid
supplements, as an effective treatment for fibromyalgia-related pain and
tenderness. Side effects of taking too much magnesium include diarrhea and
abdominal cramping, as well as kidney failure.
• SAMe: SAMe, or S-adenosylmethionine, is a synthetic form of a compound
that is found naturally in the body. It is believed to be involved in many
chemical reactions that occur in the body. A number of studies have found
that SAMe is effective at treating depression by increasing the availability of
the neurotransmitters dopamine and serotonin. This may be of benefit for
fibromyalgia patients who suffer from depression. Individuals who have
anxiety should use SAMe with caution and consult their doctor before taking
it, as it may make anxious symptoms worse. In addition, two clinical trials
have shown that compared with placebo (sugar pill), SAMe can result in
significant improvements in fibromyalgia symptoms. The most common side
effects associated with SAMe include digestive difficulties, nausea, skin
rash, low blood sugar, dry mouth, blood in the stool, excessive thirst,
increased urination, headache, hyperactivity, anxiety, and insomnia.
Other dietary supplements that have been investigated as possible fibromyalgia
treatments include alpha hydroxy acids, capsicum, gamma-hydroxybutyrate
(GHB), ascorbigen, coenzyme Q10, ginkgo, chlorella, and melatonin.
Unfortunately, there is a lack of good research investigating the link between diet
and fibromyalgia. However, this does not mean that changes to, or improvements
in, your diet cannot be of benefit to you in managing your fibromyalgia symptoms.
Dietary modifications cannot treat the fibromyalgia itself, but they may be able to
improve certain symptoms, which is a good thing!
One of the best things you can do as part of your self-management is to pay
attention to how your diet affects your symptoms and how you feel. By being
cognizant of what you eat and relating it to symptoms you experience, you may
uncover that you have particular sensitivities to certain foods. Many individuals
may be sensitive to certain preservatives, dairy products, gluten, or other common
food allergens. The best way to identify these sensitivities (and their associations to
your symptoms) is to maintain a daily food journal. By recording what you eat – as
well as recording any symptoms you experience each day – you can begin to see
patterns emerge. For example, you may notice that on days when you eat a lot of
dairy, you have more fatigue. By identifying these associations and patterns, you
can better manage your symptoms.
Some evidence suggests that eating vegetarian and vegan diets may help improve
the symptoms associated with fibromyalgia, including pain, mobility, sleep quality,
and decreased flexibility. However, only three studies have been done to evaluate
the link between vegetarian diets and fibromyalgia, and they were limited by small
numbers of subjects and design flaws. In order to better explore this potential
association, larger and more specifically designed studies will be needed.
Celiac Disease is a condition in which the lining of the small intestine becomes
damaged, preventing it from absorbing nutrients from the food you consume. The
damage results from eating gluten, which is found in wheat, barley, rye, and oat-
containing products. The cause of celiac disease is not known, and it can develop
at any point during the lifespan, from infancy to adulthood. Much like
fibromyalgia, the symptoms of celiac disease can vary between individuals, which
makes an accurate diagnosis difficult. Common gastrointestinal symptoms include
abdominal pain, bloating, gas, indigestion, constipation, changes in appetite,
diarrhea, lactose intolerance, nausea and vomiting, stool irregularities, and
unexplained weight loss. Additional symptoms that may arise over time are related
to the nutritional deficiencies that result from celiac disease and include easily
bruising, depression and anxiety, fatigue, delayed growth (children), hair loss,
itchy skin, missed menstrual periods, mouth ulcers, seizures, and tingling or
numbness in the hands and feet. Muscle and joint pain may also be present. Due to
overlapping symptoms, fibromyalgia may commonly be misdiagnosed as celiac
disease and vice versa. In addition, individuals with fibromyalgia may also have
celiac disease at the same time. Celiac disease can generally be diagnosed by a
special blood test and by examining a biopsy (tissue sample) of the small intestine
for microscopic changes that are characteristic of the condition.
Research supports the positive impact of exercise as an effective and reliable
treatment approach for fibromyalgia. In fact, no other treatment has more
scientific backing than exercise. Obesity and being overweight are primary causal
factors in the development of fibromyalgia; over 65% of patients are overweight or
obese. Furthermore, studies have shown that as weight increases, so does the
severity of fibromyalgia symptoms. Therefore, exercise is key in reducing body
weight and thus improving symptoms.
One of the most important things to understand with regard to exercise and
fibromyalgia, however, is that care must be taken. Regardless of whether you have
led an inactive lifestyle your entire life – or just recently due to the onset of your
symptoms – exercise must be introduced or reintroduced slowly and carefully. But
no matter the circumstances, it must be done. Start slowly, and consistently strive
to achieve longer durations of activity. Also remember that there is a fine line: too
little exercise may not provide any noticeable benefit, whereas too much may
worsen your symptoms. Also be aware that initiating an exercise program may
temporarily increase symptoms of tenderness and pain as the body increases its
level of conditioning and fitness. Therefore, be sure that you choose a physical
fitness regimen that is tailored to your individual fitness level and conditioning, as
well as to your pain threshold and fatigue level. There is no “one size fits all”
approach when it comes to exercise and fibromyalgia.
Examples of exercises modalities that have shown benefit to fibromyalgia patients
include Tai-Chi, yoga, water-based exercise, stretching, strength training, and
walking. Of these strength training is very important. Although it can be difficult to
initiate, it has shown proven effectiveness at reducing pain and fatigue. Additional
information regarding these exercise regimens can be found on our website,
A number of additional therapeutic and alternative treatments are also used by
many people with fibromyalgia. Below is a brief overview of some of the most
commonly used therapies:
• Balneotherapy: Balneotherapy is the therapeutic use of water to heal
disease. Balneotherapy is thought to work through a number of means,
including increasing body temperature (to kill harmful germs and viruses).
It is thought to improve blood circulation and oxygen delivery to cells,
improve metabolism, improve endocrine gland function, improve immune
system function, and improve mental well-being by promoting relaxation.
• Chiropractic: Chiropractic focuses on treating disorders of the
musculoskeletal and nervous systems within the body, and the impact that
these disorders have on overall health and wellbeing. It utilizes a drug-free,
hands-on approach that involves examination, diagnosis, and treatment.
Chiropractic care is frequently used to treat ailments such as back and neck
pain, and pain in the elbows, knees, and hips. It can also be used to treat
• Massage therapy: Massage therapy is the therapeutic use of touch and
pressure applied to muscles in order to relieve pain, rehabilitate injuries,
reduce stress, provide relaxation, and relieve anxiety and depression.
• Trigger point therapy (also known as myofascial release therapy):
Myofascial release therapy is a subset of massage therapy in which the
therapist uses sustained pressure in order to release tightness in the fascia, or
connective tissues, between muscles.
• Aromatherapy: Aromatherapy involves the use of essential oils from
flowers, herbs, and trees as therapy to improve physical health and well-
being. Essential oils are scented liquids that are removed from plants by
using steam or pressure. They contain the chemicals that naturally give the
plant its “essence,” or fragrance. Aromatherapy is administered in different
ways, including inhalation and direct application to the skin. Direct
inhalation is believed to have psychological effects that stimulate or sedate
various organs within the body. Direct skin application, either through
lotions/creams or massage, are believed to work by inducing relaxation and
providing psychological benefits.
• Cognitive behavioral therapy: Cognitive behavioral therapy is a type of talk
therapy that is commonly used to treat anxiety and depression, as well as a
number of other mental disorders and psychological symptoms. It is based
on the premise that by understanding how their thoughts and feelings
influence their behaviors, patients can make deliberate behavior
modifications that ultimately result in symptom improvement.
• Reflexology: Reflexology is an alternative therapeutic practice that involves
the application of pressure to the feet and hands using specific thumb, finger,
and hand techniques in the absence of oil, cream, or lotion. It is based on a
system of “zones” within the feet that reflect an image of the body. The
premise is that applying pressure to certain zones will results in physical
changes in the corresponding areas of the body.
You should understand that the above-described alternative therapies barely scrape
the surface of all the complementary and alternative therapies available for the
treatment of fibromyalgia symptoms. It is beyond the scope of this eBook to
provide a comprehensive review of all the modalities available. More information
can be found on our website, www.fibromyalgia-treatment.com. In addition, you
can also learn more by visiting the National Center for Complementary and
Alternative Medicine, at www.nccam.nih.gov.
Chapter 6: Pulling it all Together: A Systematic Approach
Experts across all realms of the fibromyalgia world – from prominent authors to
reputable associations to devoted researchers – have noted the need to effectively
track what you are doing and what you experience with regard to your
fibromyalgia. Unfortunately, none have gone into great detail about the processes
that should be used - the “how to” part. The purpose of this chapter is to do just
that: provide you with the how to tools you need to take ownership of and
maximize the potential of your fibromyalgia self-management. You need to inspect
what you expect, and this chapter will provide you with the information required to
Before we begin with the discussion of the tools that you will need, consider this
example to help put the whole concept into perspective: When you are sick and
need treatment, you visit your doctor. As your doctor evaluates you, they go
through a defined process to determine the course of action they choose to
recommend. First, they ask you questions about your signs and symptoms. Then
they record this information in your medical record for reference back to it at a
later point in time. Next, based on what you have told them, they use all of the
tools at their disposal – their medical knowledge, relevant clinical guidelines, and
their understanding of how the illness is manifesting itself in your body – to
recommend a course of action, i.e., a treatment. Essentially, what your doctor has
done is collected data (by asking you questions about your signs and symptoms),
analyzed that data using various tools, and then recommended a course of action
(i.e., a treatment) to you as a result of their data collection and analysis. If you
leave their office and return two weeks later, having tried the treatment and found
it unsuccessful, the doctor will repeat the process of data collection, analysis, and
action recommendation. By using a defined, repeatable system to evaluate your
illness, the doctor does his best to ensure that the correct steps are always followed.
You are not a doctor, however you should still approach the self-management of
your fibromyalgia with a defined, systematic approach that is firmly rooted in data
collection and data analysis. Do not let this concept frighten you; it is easily
achievable and anyone can do it. You can do it! You must inspect what you expect.
Step one: Collect - Track EVERYTHING associated with your fibromyalgia.
This is a crucial first step. Think of it as the “data collection” process that allows
you to take inventory of - and record - your signs and symptoms. Record how you
feel each day, the symptoms you experience, possible triggers for those symptoms,
what treatments you are trying, and how those treatments are impacting your life.
Also note relevant factors such as sleep, stress, work pressures, family issues,
anxiety and physical or emotional happenings. You are looking to build a record of
how fibromyalgia is impacting and being impacted by your life.
Step two: Analyze - EVERYTHING you track. Analyze the data you record; your
symptoms, your treatments, their effects on your body, your life, your overall well
being. By having tracked everything and recorded it, you will have a wealth of
information at your fingertips to analyze and to share with your care team and
support group. You might see your fibromyalgia in a different light when it is laid
out before you in writing on the table or on the computer screen. Patterns will
emerge that you may not have otherwise noticed. Ideas will present themselves to
you as you observe those patterns. And it will all culminate in providing you with a
much more focused and well-rounded understanding of your medical condition.
Step three: Utilize - Using your newfound understanding of your fibromyalgia –
its patterns, nuances, and effects on your life – evaluate your available courses of
action (i.e., treatments) based on your analysis. Only through analysis and
evaluation can you truly decide which courses of action will be best for you.
It is important to remember that this is an ongoing process. Tracking, recording,
and analyzing your fibromyalgia signs and symptoms for one week will not lead
you to a treatment that will ultimately get everything in check for you. Such a
scenario is unrealistic in light of the elusive nature of fibromyalgia. You will need
to rely on your system of data collection, analysis, and evaluation as you try new
actions based on your findings. As those actions give you benefit – or not – you
must continue to assess your symptoms by tracking and analyzing them to
determine if more modifications are needed. Remember, this is an ongoing
process. But you can do it! INSPECT what you EXPECT!
Recording your signs and symptoms on a regular basis – "collecting your data” –
will require effort. It will require more than just jotting down a few notes here and
there on a scrap piece of paper. You need an organized system. What works best
for one person may not work best for another, but the overall premise is the same
for everyone. Find the system that works best for you so that you can inspect what
You could approach your system the old-fashioned way, with journals, forms,
notebooks or 3-ring binders, photographs and/or video, a tape recorder or voice
recorder, and file folders. Although such a paper-based system may work for some
people, it is terribly inefficient and compartmentalizes your data. You may have
symptoms logged in one notebook, attempted treatments logged in another, and a
free-written diary of your personal thoughts and feelings in yet another notebook.
The information in these notebooks may be augmented with voice memos you
record on a voice or tape recorder, however those recordings are filed away
elsewhere, unable to be viewed in context with the written notes. Finally, you may
misplace or misfile a journal or paper, losing valuable “data” that may make the
difference for you in the evaluation of your fibromyalgia.
How do you analyze data that is spread out across a bunch of journals and binders?
How do you identify patterns and causal relationships when your data is poorly
organized and difficult to review as a whole? How do you turn hand written notes
scattered across multiple 3 ring binders and notebooks into detailed graphs and
charts you can use to conduct professional quality analysis? The answer : you
don't. A paper-based system greatly limits your ability to evaluate your
fibromyalgia in the most beneficial and comprehensive manner. Successful
organizations do not track their key data on paper, and you shouldn’t either!
Admittedly, using a more traditional paper-based system is far better than doing
nothing; FAR BETTER. However, even in the best case scenario, such a system
leaves you managing your efforts as if it were the 1950s. The Elusive Fiend is a
tough adversary and you need to bring your best game: put technology to work.
Yes, use your computer. Odds are, if you are reading this, you have one! Here are a
few preliminary tips that can be of great benefit to get you started on your path
toward successful self-management of the Elusive Fiend:
• Create directories and folders on your computer specifically dedicated to
storing all of your fibromyalgia-related information. Do not mix your
fibromyalgia files in with other files. Consider using file sharing services
such as Drop Box to enable sharing data with your care team and support
• Obtain copies of your medical reports, charts, and related documents – scan
them – and store the scanned copies on your computer. Remember, these
documents contain YOUR health information, and as the leader of your
team, you have a right to see and possess it and to determine with whom you
wish to share it.
• Create a template document to use for recording notes for each doctor or
care provider you visit. Use this template to note questions and issues you
have prior to your visit, to serve as a reminder for yourself and to keep your
provider in the loop as it pertains to your overall goals.
• Spreadsheets. These are the most important tool you can have (unless your
using FibroTrack, in which case the complete system is provided for you).
Use spreadsheets to track EVERYTHING. Use them also to keep a journal
and any special notes you wish to record. Spreadsheets offer the key analysis
tools you need such as charts and graphs. Good data collection is easily
reduced in value by poor analysis abilities.
• If your computer skills are limited and you are uncertain how to create a
template or a spreadsheet - learn! Ask a family member or friend to help
you, or utilize many of the free training videos that are available online.
Resources such as Open Office are great for this and are free.
There are many methods that you can use to track symptoms. You could use a
handwritten journal, however as previously stated, a much better option would be
to use a spreadsheet (the best option would be to use our interactive FibroTrack
system). Regardless of which method you choose, there are a few things to keep in
mind and remember to always do.
As you evaluate and begin to define your fibromyalgia, note ALL of your
symptoms. All means ALL. This includes even minor ones that you may brush off
as being insignificant or even unrelated. As new symptoms pop up during ongoing
treatment, note these and add them to your tracking log. Doing so can be key in
identifying the things that may be side effects from drugs or supplements you are
It is extremely important to track everything in a consistent, systemized manner.
Rate all of your symptoms on a scale from 1 to 10, with 10 being the worse. If you
cannot use a spreadsheet, create some type of chart that you can note every day. If
you choose to use a spreadsheet, get into detail and make your symptoms specific.
Group your symptoms together by type, using such categories as muscular pain,
tender points, mind/body functioning, internal pain, and so on.
Tracking Causal Relationships, Events, and Triggers
As you track the causal relationships, events, and triggers that you observe, do so
using the same type of system used to track your symptoms. Track your sleep;
break it down into such categories as how long you slept, what time you went to
bed, what time you woke up, and how many times you arose during the night. Rate
the quality of your sleep – was it restful? Did you have nightmares? How did you
feel upon waking up? Use the same granular detail when tracking and recording
other causal relationships, events, and triggers, such as fatigue, stress, emotions,
relationships, body weight, depression, anxiety, PMS, menstrual pain, and
Keep track of the visits to your doctor, the medical tests you undergo, any
accidents you have (slips, falls, bumps, bruises), the weather, and any abnormal
actions or activities you experience.
Work hard to collect data that can be evaluated to look for possible causal
relationships and patterns, which can then be used to help you structure specific
***Understanding how your individuals symptoms and causational triggers and
events are impacting each other and interacting in YOUR fibromyalgia is critical
to effectively managing your ongoing treatment efforts. You need to turn this
information into relevant data that can be evaluated. This is the core of enabling a
process of “intelligent trial and error.”
Tracking Your Treatments
When attempting new treatments, make limited changes at a time, often only one at
a time. If you commence two separate treatment initiatives at the same time – such
as a dietary modification and a dietary supplement - it may be hard to differentiate
which treatment is causing any side effects were you to experience any. This is a
core concept to sound scientific processes - testing only single variables at a time.
As you track your treatments and everything relative to them, divide them into
groups to enable successful management. Examples of these groups might be
drugs, dietary supplements, alternative remedies, therapy programs, exercise, diet,
and so on. Keep records relative to all of these, and note any questions that you
have. Integrate your team, and keep track of questions, answers, and opinions. All
of this information is valuable for integrating data into a bigger picture strategy.
It is also important to track what you have done, what you have taken, when you
took it, and how much. For exercise, record how long you exercised, the intensity
at which you exercised, and what method you used to exercise (swimming,
walking, etc.). Record therapies in which you have participated, which ones
helped, and why you chose to do it. Documenting the experiences you have with
these efforts can provide you with a wealth of insightful information.
“Intelligent Trial and Error” – A Concept and a System
Determining the most effective treatment(s) for your fibromyalgia will boil down
to a simple process of trial and error. The purpose of the efforts you are making in
your self-management focus and data collection is to transform a basic process into
an empowered system that is “intelligent” - driven by the data you have diligently
collected regarding your symptoms, signs, triggers, treatments and so on. Rather
than taking shots in the dark and hoping for the best, you are making intelligent
decisions based the results measured from previous intelligent decisions, all based
on collected and analyzed data.
In order to make the most of your intelligent trial and error system, implement
review systems that enable you to evaluate treatment efforts relative to your
symptoms, events, triggers, and other variables. Plan for WHEN you will conduct
reviews, and make it a specific task on your fibromyalgia to-do list. Remember
from above that data collection relative to symptoms, events, triggers, and
treatments is ongoing, and while review should be ongoing as well, make it a
separate task and define it as such. Set aside specific time to devote to doing this,
including efforts to integrate your care team and support group into the process.
If you are using a spreadsheet as is recommended, your spreadsheet can easily
generate charts and graphs. Such visual representations may be useful in helping
you visualize the impact your treatments and other efforts are having on the many
variables associated with your fibromyalgia. Another visual aid is to use hand-
written diagrams. Often the process of putting these diagrams together (including
the process of throwing away several iterations along the road!) IS evaluation in
and of itself. Review your symptoms charts, treatment effort logs, and personal
notes as to why you have used the treatments you have tried. Relate the answers to
things in your diagram.
It is also vitally important to identify YOUR negative feedback loops. The patterns
that will emerge during your data review and analysis will help to identify these,
which may not have been visible to you before you began analyzing and reviewing
your fibromyalgia in a focused manner. By identifying these negative feedback
loops and applying strategies to stop them, you can likely make a noticeable
impact on certain variables associated with your fibromyalgia. Through data
evaluation, pattern observation, identifying causal relationships and triggering
factors, you can identify specifically the areas where you need to TARGET your
In a reverse of the process, implementing various treatment efforts and gauging
their effect on your fibromyalgia will help to identify the POSITIVE feedback
loops that you are hoping to establish. By determining the intervention strategies
that are most effective, you can begin to slowly choke off causation factors, and
initiate positive feedback loops that can reinforce ongoing treatment efforts.
For example, if you undertake exercise as a treatment, you may find that you begin
to lose weight. As you lose weight, it may improve your depression. Improvements
in your depression may result in further reductions in anxiety and stress, all of
which may culminate in improved pain, fatigue and other symptoms.
Exercise Weight Loss Less Depression / Anxiety / Stress reduced
The Key to Success
The single most important factor when it comes to applying the principals
presented here to effectively gain control over your fibromyalgia is to simply take
action. Decide on one small piece of a plan to begin actively working to manage
your fibro and then start doing it. This can be as simple as grabbing a notebook and
writing down your key symptoms. A small start is a start - and getting started is
typically the biggest step required. Don't just think about it!
Integrate your efforts into your daily planning. Set aside time specific to your
fibromyalgia management efforts. Note specific detailed tasks - what you need to
do and how, then assign time to it and get it done. One small step at a time, one
new treatment initiative at a time - put the principals of Intelligent Trial and Error
Understand that this process will be frustrating at times. Expect far more failures
than successes. Know that most successes will be small in nature. Remember the
magic pill lesson, and anticipate that in order to realize the largest reduction in
your symptoms possible, gains will most likely come in small steps. One treatment
initiative may yield a 20% reduction in a symptom. Another later effort may yield
another 15% improvement. Some efforts may make things worse (stop those!).
Over time you will build a treatment regimen that you can document is reducing
your symptoms by a meaningful amount. Even though some symptoms may never
be totally eliminated, the ability to reduce their impact on your life by 50% or more
can be the deciding factor between a full and happy life where your managing your
fibromyalgia and a life of misery where fibro is dictating to you.
Chapter 7: The Future: "FibroTrack"
Effective systems are the key to an effective management process. Systems are
useful because they foster habits and provide channels for taking effective action.
As we discussed in Chapter 6, there are a variety of systems that can be used to
manage your fibromyalgia from a data collection and analysis standpoint. “Old
world” systems, such as the use of journals and notebooks have deep inherent
flaws. These “systems” do not facilitate putting your data to use. They
compartmentalize and fragment data, and make it difficult to evaluate in its entirety
and in context. Paper-based systems are rudimentary and inefficient, and therefore
not ideal for tackling the Elusive Fiend. It is important to recognize that data
collection is 90% pointless (the remaining 10% is empowerment) unless you
implement a focused system that can allow you to effectively evaluate and convert
your data into defined action plans.
FibroTrack: Internet Enhanced Self-Management
FibroTrack is an intuitive, graphical user interface “cloud based” system that has
been specifically designed from the ground up to facilitate all aspects of managing
FibroTrack provides users with a wealth of tools – all available at the simple click
of a mouse – all designed to be integrated into an overall fibromyalgia specific
• Educational resources including hundreds of articles, blogs, Webinars and
videos - all accessible online via computer or mobile device.
• Simple, intuitive symptom tracking in incredible detail including user
defined symptoms and treatment options research tools integrated into the
symptoms help functions.
• Treatment Program tools including detailed interfaces to research and create
new treatment programs consisting of pharmaceuticals, dietary supplements,
diet changes, pain medications, therapy options and exercise.
• Tracking tools associated with all aspects of your treatment program
including life events which impact or are impacted by your fibromyalgia.
• Natural Products Comprehensive Database alternative treatment data
integration - the Internet’s largest research based repository of treatment
• Comprehensive reporting and evaluation tools including user defined
reports. Reports include graphs, charts and animations!
• Online contact management and communications tools.
• Data sharing capabilities with healthcare providers including
communications tools and shared online reporting
• Online support groups - with built in "smart-matching" capabilities that link
users to others with similar symptoms and profile data
• Social networking functions to enable support groups and easy tracking of
general ongoing treatment efforts.
• Complete user control over all personal medical data with tools to ensure
privacy. Users control what data is shared and what is kept totally private.
• Discussion forums
• Webinars - ongoing expert interviews and online training seminars on a huge
variety of fibromyalgia treatment related topics.
• Secure server with state of the art data protection capabilities for security.
• Much, much more!
Capabilities like FibroTrack were not possible as recently as several years ago.
However, technology has fortunately moved in directions that enable treatment
approaches previously thought to be ridiculously impossible. Now, we are able to
achieve easy data collection from anywhere, receive targeted research, achieve
intelligent analysis – all of which is facilitated by sophisticated technology and
accessible through intuitive graphical interfaces. In other words, analysis
capabilities that doctors have never dreamed of are now possible, and in fact
accessible in the palm of your hand!
While we certainly feel the FibroTrack is by far the best means of building and
implementing an effective self-management system, please remember that it is not
required. The purpose of this ebook is to educate you relative to how an effective
self-management program should be structured and operated.
We invite you to visit our website, www.fibromyalgia-treatment.com, where you
will find a wealth of useful information. In addition to our fibromyalgia self-
management tool (FibroTrack), you will find researched-based articles on a wide
variety of fibromyalgia-related topics, including common symptoms, treatments,
associated conditions, diagnostic methods, and more. In addition, you can check
out our blog, meet other members through online support groups and link-outs to
popular social networking sites, and find a variety of other resources to assist you.
Remember, knowledge can lead to success but not without action. Take action by
sharing our website with others who may have a need for it. Share it with your
team members, family, and friends. Use our FibroTrack tool to help manage your
fibromyalgia; it offers a comprehensive system of symptom and treatment tracking,
and does all of the work for you. You have enough on your plate while trying to
chase down the Elusive Fiend; let us help you by making your self-management as
simple and as streamlined as possible.
In addition, we would greatly appreciate your feedback on this ebook, and as with
our website, we ask that you share it with others so that they too can benefit from
the information contained herein. Finally, if you feel that FibroTrack is the best
system for you to achieve successful self-management of your fibromyalgia, but
you are unable to afford it, please contact us. We do not wish for anyone who
really has a need to be excluded due to costs.
Also note - 10% of all net proceeds from FibroTrack go toward funding
fibromyalgia awareness and research efforts!
The information contained in this ebook guide is for informational purposes only.
The author is not a doctor, research scientist, medical practitioner of any sort,
lawyer or accountant. Any advice, information, perspectives, ideas or medical
opinion expressed in this ebook is nothing more than the authors opinion based on
his own personal experience and provided to you for informational and
entertainment purposes only.
You should always seek the advice of a medical professional before taking any
medical related action. Any actions taken on the part of a reader that may have
been suggested in this ebook are taken of the readers own free will with the
understanding that said actions are in no way sanctioned, approved or in any way
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Please understand that there are some links contained in this guide that the author
may benefit from financially. The material in this guide may include information,
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