Professional Documents
Culture Documents
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Table of Contents
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Introduction 5
Chapter 1: Getting Started: From Confusion to Knowledge 10
Associations and Internet Resources 13
...................................................
Magazines and Journals 14
Doctors, Care Providers, and Therapists............................................................... 15
. . . . . .............................................................................................
Support Groups 16
Support Groups and Accountability...................................................................... 17
............................................
Primary Focus 18
. . . .. .. .. .. .. .. .........................................................................................................................................
Chapter 2: Reviewing Fibromyalgia 19
History and Introduction 19
Demographics 20
Symptoms 20
. . . . . . . . . . . ...............................................................................
Fibromyalgia Triggers 27
Diagnosis............................................................................................................... 27
................................................
Causal Theories 29
Chapter 3: Fibromyalgia: The Elusive Fiend 30
..............................
General Confusion 30
. . . . . . .. .. ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ...
A Tough Nut to Crack........................................................................................... 32
Symptom–Cause Interplay and Confusion 32
Negative Feedback Loops 33
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Medical System 35
"Magic Pill Syndrome" 37
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. . . . . . . . . . . . . . . . . . . . .................... .. .. .. .. .. .. .. .. .. .. .. .. .. .. .. ..
Effective Treatment Overwhelming Options 38
Chapter 4: Self-Management: Basis for Effective Treatment...................................................... 40
Taking Responsibility 40
- Laying
. .. .. .. .. .. .. ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ...
Education 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
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Antidepressants 59
Prescription Sleep Medications............................................................................. 60
. . . . .....................................................................................
Anti-Anxiety Medications 60
Pain Management.................................................................................................. 61
Coping Strategies for Pain 63
Dietary Supplements 63
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Diet 66
. . . . . . . . . . . ...........................................................................................................................
Exercise 67
Therapies 68
Chapter 6: Pulling it all Together: A Systematic Approach 70
. . ...........................................................................................
Tracking Your Treatments 78
“Intelligent Trial and Error” – A Concept and a System 79
The Key to Success 80
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Chapter 7: The Future: "FibroTrack" 81
FibroTrack: Internet Enhanced Self-Management............................................... 82
Disclaimer 85
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Introduction
My wife and Ichased 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. Ipurchased 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.
After being diagnosed with fibromyalgia and learning about the difficulties in
treatment, Michele began focusing her attention on researching and implementing
treatment options while my focus remained on running our business so we could
pay for the expensive treatment efforts she needed. (Self-employed with a very
small company - our insurance paid for essentially nothing). We went through
many doctors and tried different drugs and combinations of drugs and listened to
many specialists. Through it all the fibromyalgia waxed and waned but it was
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always there. At times things got better and we were deluded into believing a
corner had been turned only to feel crushed again when things got worse. But - we
maintained our dream.
Through 2008 as our efforts to make the sailing dream a reality began to pick up
steam we also increased the war against fibromyalgia. We began seeing a fibro
specialist center, and despite this care being extremely expensive, we went all-in.
We both believed that putting forth the effort in a big push to once and for all crush
this beast would yield success, and if it didn't, we had a backup plan. The backup
plan was simple - If you’re going to be in pain, you might as well be in pain in a
tropical paradise living aboard a boat. That sounded pretty good at the time.
All of the hard work and effort did pay off. Michele felt much better. In late 2009
we moved aboard our boat full time and began to "live the dream". We had
problems (the saying "Going cruising is just repairing your boat in exotic
locations" is true). We had adventures and we had fibro. After getting away from
the "Big Push" medical efforts the fibro began to slowly build back. After we
returned from the Bahamas in June of 2010, fibromyalgia flared with a vengeance,
raging like Ihad never seen before and transforming Michele into a complete
wreck.
We were convinced something more was wrong. This flare was different. The pain
was overwhelming but it went beyond that to shaking and convulsions and huge
migraines coupled with severe anxiety, bowel pains, horrible leg cramping and
other symptoms. Was this MS? Could a brain tumor be in play? What could be
causing all these new symptoms and in such severity? We were distraught and
confused, but one thing rapidly became clear - the "Cruising Dream" was dead.
Michele was in serious trouble. We had to seek medical care at once to find out
what was really wrong.
This was my life. It's bad enough having dreams crushed, but
the worst time of
watching my was overwhelming. We launched into a whole new
wife suffer
endeavor to determine was wrong. Medical tests flew about like confetti on
what
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, Ibegan to feel a new sense of mission. Iwould focus my
life on helping my wife overcome this disease and provide my family with the rich
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and productive life that they want and need. Ihad lots of ideas on what form this
might take, but the first step was to make myself an expert on fibromyalgia. Iset
about this task aggressively reading everything Icould find. Iread books, studied
online, delved deep into research reports, contacted research scientists and in
general, did everything Icould to figure out how to help my wife. Ihad every
expectation that my efforts would yield a magic combination of treatments that
would bring complete success.
Ino longer have those expectations. Education and knowledge are wonderful
things, but in this case, reward was tempered as Ibegan to realize that fighting
fibro is a war, not just a single battle.
Ialso understood that determining what treatments would be most effective for
Michele would be an individual struggle. Ilearned 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. Ineeded 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. Ilearned 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 Ilearned, the more Ibegan to seek out information about self-
management programs. very few things Ifound consistent among the
Among the
"experts" on was the call for patients to embrace the concept of self-
fibromyalgia
management. It was clear to me: given the nature of fibromyalgia that a patient-
directed, team-focused self-management approach made by far the most sense,
but moving from the conceptual idea to implementation proved to be very
difficult.
Ibegan 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, Iexpected
to find structured programs specifically aimed at assisting those fighting
online
fibromyalgia in their running of an ongoing self-management program. Isearched
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, Ifound nothing in online systems aimed at
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facilitating an ongoing process. Its one thing to learn what one may need to do, but
it is something else to determine how to actually do it. Ifound 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, Iam 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 processes that Ipresent in this book are not new. Ihave not been
and
engaged in new conceptual research and the processes discussed here are not
revolutionary new developments. What Ihave done is take existing research data
and treatment process suggestions from many different experts and combine them
into an overall strategy that can be implemented and managed by those struggling
with fibromyalgia.
Ihope this ebook helps you to improve your fight against fibromyalgia. You will
find references to the FibroTrack application throughout this ebook and Ido 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. Iurge 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.
Ialso need to point out that a great deal of relevant information about fibromyalgia
is not in this ebook, but is availableon my website. The following 3 main sections
of the site have expandable menus to the left through which you can navigate to
hundreds of detailed articles, all based on medical research with most including
references to source research materials. My goal for our website is simple: To
provide the largest and most accurate repository of fibromyalgia information on the
Internet.
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Finally - THANK YOU. Thank you for downloading this ebook and taking the
time to read it. Itruly value the trust you have placed in me by taking the time to
read the information Ihave put together for you.
If you have any suggestions, questions, concerns or problems that you feel Imay
be able to help with, Iurge you to contact me. Email:
terrycspringer@yahoo.com
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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.
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 source for definitive research based articles and information related to
online
fibromyalgia -
so of course we urge readers to use this resource.
Books
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A number of Internet-based resources are also available to those who suffer from
fibromyalgia. In addition to our website, www.fibromyalgia-treatment.com, the
online resource Co-cure (www.co-cure.org) contains helpful information for both
fibromyalgia and chronic fatigue syndrome patients, including a daily newsletter, a
message board, a list of “good doctors,” and a comprehensive review of additional
online resources. The website www.immunesupport.com is an industry-sponsored
patient education site that donates to fibromyalgia and chronic fatigue syndrome
research and advocacy initiatives. In addition, it contains a large repository of
articles, as well as message boards and support group information. Finally, the
Oregon Fibromyalgia Foundation is the website of well-known fibromyalgia
researchers Robert Bennett and colleagues (www.myalgia.com).
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In addition to the education and advocacy these organizations provide, there are a
number of magazines and newsletters that provide fibromyalgia-specific
information and support to consumers. The NFMCPA publishes their bi-monthly
magazine Fibromyalgia and Chronic Pain LIFE, which is available for free to
registered members. Back issues are available for download on their website. The
Fibromyalgia Network, a member-supported patient-advocacy organization that
covers the latest fibromyalgia-related research and treatments, publishes both a
quarterly journal (Fibromyalgia Network Journal) and monthly eNews pertaining
to topics of interest for both fibromyalgia and chronic fatigue syndrome sufferers.
These publications are all free of advertisements. Fibromyalgia Alternative News is
an alternative health magazine devoted to exploring the underlying causes of
fibromyalgia and chronic fatigue syndrome, and is published quarterly by the non-
profit organization “Fibromyalgia Coalition International.” Other periodicals that
may be of interest to fibromyalgia suffers include magazines such as Women’s
Health, which provides information on health, fitness, nutrition, and beauty issues
of interest to women, as well as Prevention magazine. Prevention focuses on
providing information for consumers to help them lead a healthy lifestyle and
prevent disease.
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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.
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Support Groups
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 the meetings and the focus of the group. Therefore, it
dominating
is important you to choose the support group that is best for you and your
for
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.
• www.dailystrength.org
• www.mdjunction.com/fibromyalgia
• www.fibrotalk.com
• www.livingwithfibro.org
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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 group
successful support is
that all members to each other. Like soldiers in a
maintain their accountability
foxhole, support group members are
war against fibromyalgia together.
in this
They should hold each other accountable, as accountability has demonstrated
effectiveness in helping people achieve a variety of goals, and it can also help
patients progress toward reducing fibromyalgia symptoms as well.
The FibroTrack
online self-
management system
includes many tools
focused on assisting
those with
fibromyalgia in
building and
participating in an
effective,
meaningful online
support group. This
includes a
sophisticated system
for matching potential support group members based on their demographic data
(age, geographic location, work situation, comorbid conditions and Fibromyalgia
symptoms). FibroTrack also facilitates support group interaction with social
networking functions, contact sharing and rating, symptoms and treatment program
sharing, private messaging and forums. The FibroTrack system has been designed
from the ground up to promote and support effective support groups.
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Primary Focus
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Over the years, fibromyalgia has carried a legacy of negative stigma within many
realms of the medical community. Originally disregarded as a “psychosomatic”
illness, many clinicians believed that people with fibromyalgia simply imagined
their symptoms. Others believed that fibromyalgia itself was not a singular disease,
but rather a combination of symptoms from a group of related conditions. In
addition, other clinicians have refused to acknowledge the disease altogether,
considering it an illegitimate condition and simply treating each specific symptom
in the absence of a formal diagnosis. This lack of acceptance by the medical
community has made patients feel ostracized, confused, and frustrated. In addition,
this lack of acceptance has also made it difficult for patients to explain their
symptoms to family and friends. When the American College of Rheumatology
established definitive diagnostic criteria for fibromyalgia in 1990, the disease
finally received the credibility it deserved and gave patients the ability to receive a
true diagnosis. However, despite the existence of these diagnostic criteria, some
clinicians still refused to accept that fibromyalgia is a true condition and continued
to insist that its symptoms were the result of another physiologic condition or
simply psychological in nature. Despite the continuing resistance from some in the
medical community, fibromyalgia has become more widely accepted as a true
medical diagnosis, thereby enabling patients to get the care they so desperately
need and so greatly deserve.
For far greater detail relative to defining and understand the many aspects of
fibromyalgia, please refer to our website – www.fibromyalgia-treatment.com. The
sections in the primary header labeled “What is Fibromyalgia?”, “Fibromyalgia
Treatment” and “Fibromyalgia Symptoms” contain comprehensive information
related to all aspects of fibromyalgia. You will find individual articles detailing
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Demographics
Symptoms
Pain
The pain associated with fibromyalgia causes sufferers to ache all over. Certain
"Tender Points” on the body may continue to ache regardless of the therapies a
patient tries, and muscles may feel constantly overworked. The pain of
fibromyalgia can concentrate around the joints of the neck, back, shoulders, and
hips, which can make sleeping difficult and restrict mobility. Furthermore,
fibromyalgia pain is frequently made worse by changes in weather, temperature,
loss of sleep, fatigue, excessive physical activity or lack thereof, and stress/anxiety.
Fibromyalgia pain differs from acute pain (that which originates suddenly and
resolves over a period of time, such as with a broken bone), in that it is chronic,
persistent, and ongoing.
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Fatigue
Some researchers and physicians have observed strong similarities between the
fatigue seen in fibromyalgia patients and the condition called chronic fatigue
syndrome a disorder marked by persistent, extreme fatigue that does
(CFS). CFS is
not improve, even after a person rests. In addition, a number of other symptoms are
commonly seen in CFS, including muscle pain, impaired memory, headache, sleep
problems, and painful lymph nodes. It also occurs most often in women in their
forties and fifties. Due to the strikingly similar symptoms and the high rate of
occurrence in women, CFS and fibromyalgia are often miss-diagnosed as each
other or diagnosed together in the same patient.
Sleep Impairment
fact the brain should be in a state of deep sleep. These bursts of activity prevent
individuals from having deep, restful sleep. Sleep apnea is also common, and it
results when an individual stops breathing while asleep. These pauses in breathing
disrupt sleep and cause a shift from deep sleep into lighter sleep phases, all of
which culminate in poor sleep quality and a feeling of fatigue and tiredness the
next day.
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Morning Stiffness
Between 70% and 90% of individuals with fibromyalgia report waking up with
increased pain, tenderness, muscle aches, and stiffness in the morning. They may
feel as if it takes several hours for their bodies to loosen up or “warm up” before
becoming fully mobile. This obviously can interfere with mobility and limit
activity, making even the most simple tasks – such as getting out of bed,
showering, and driving into work – incredibly difficult for fibromyalgia patients.
Symptoms of morning stiffness include muscle tightness upon awakening, stiffness
particularly in the hands, fingers, feet and toes, limited range of motion in the
joints (for example, being unable to fully extend your leg), and generalized
stiffness in the back, neck and head.
Tender Points
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tissue surrounding muscles. When fascia is injured, it “knots up” and creates what
are known as trigger points. When touched, these trigger points are very painful
and the pain radiates throughout the muscle and surrounding areas. The chronic
muscle pain that results from these trigger points is known as myofascial pain
syndrome. The pain is persistent, worsens over time, and can result in stiffness and
difficulty sleeping. Much like fibromyalgia, myofascial pain syndrome can have a
significant negative impact on an individual’s ability to live an active lifestyle. As
a result of their overlapping features, myofascial pain syndrome may be
misdiagnosed as fibromyalgia and vice versa. What is important to understand,
however, is that trigger points for myofascial pain syndrome are not the same as
tender points in fibromyalgia. Trigger points are the underlying cause of
myofascial pain syndrome, whereas tender points are a defining symptom and at
times a diagnostic requirement for fibromyalgia. Tender points do not present an
underlying hard knot of muscle tissue as is typically present in a myofascial trigger
point. Tender points have extreme tenderness and disproportionate pain when
pressure is applied, but no hard muscular knots are present.
Headaches
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cognitive difficulties are all very troubling for fibromyalgia patients and can fuel
feelings of anxiety and depression.
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.
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Interstitial Cystitis
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generally occur between the knee and ankle, although the upper leg, feet, or
arms may also be affected. Individuals who suffer from RLS generally
describe the sensations as “aching,” “creeping,” “crawling,” or “tingling”
and usually experience their symptoms at night while lying down.
• Dry mouth and eyes: Many individuals with fibromyalgia report dry eyes
and dry mouth. Sometimes these symptoms are directly related to the
condition itself, but often they are experienced as side effects to medications
used by many fibromyalgia sufferers, including antihistamines,
antidepressants, diuretics, and opiate pain medication.
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Fibromyalgia Triggers
Diagnosis
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 presence of other similar conditions. Rheumatic diseases, such as
out the
rheumatoid arthritis and lupus can easily be ruled out by the presence of definitive
clinical features characteristic to each condition. For example, patients with
rheumatoid arthritis experience joint swelling, joint deformities, and specific
abnormalities in particular blood tests. Patients with lupus present with rashes,
generalized and widespread inflammation, and abnormalities in specific blood
tests. Ruling out the presence of certain neurological conditions can prove to be
more difficult, as many fibromyalgia patients may report feeling numbness,
tingling, and burning sensations. However, ultimately the exclusion of neurological
conditions is easily done, as most fibromyalgia patients do not show any abnormal
findings when evaluated using standard neurological testing. The greatest difficulty
in the diagnosis of fibromyalgia occurs when attempting to distinguish it from
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other functional pain disorders, such as TMJ, irritable bowel syndrome, and
chronic fatigue syndrome. CFS and fibromyalgia have been estimated to co-occur
in as many as 80% of patients, whereas approximately 70% of fibromyalgia
patients also have irritable bowel syndrome. Approximately 40% - 70% of
fibromyalgia patients also have TMJ. As such, there is a high frequency of mis-
diagnosis, as the symptoms associated with these disorders are very subjective and
physician interpretation may vary, leading some physicians to diagnose one disease
when another might view the patient’s symptoms differently.
Moldofsky and Smythe proposed the first diagnostic criteria for fibromyalgia in
1977. These criteria included 1) the presence of at least 12 of 14 tender points and
2) non-refreshing sleep. In 1981, Yunus et al. proposed a revised, more formal set
of criteria to diagnose fibromyalgia, which required aching, pain, and stiffness for
a minimum of three months as well as the presence of at least five tender points. In
addition, Yunus et al. required patients to have at least three of the following
symptoms: decreased physical activity in response to symptoms, weather-related
symptom aggravation, stress/anxiety-related symptom aggravation, sleep
disturbances, fatigue/tiredness, anxiety, headaches, irritable bowel syndrome,
swelling, and/or numbness. Finally, in 1990, the American College of
Rheumatology (ACR) established official diagnostic criteria for fibromyalgia.
These included the presence of chronic widespread pain and a minimum of 11 of
18 tender points. In addition, the attention and endorsement by the ACR finally
gave much-needed recognition to fibromyalgia as an official clinical diagnosis.
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Causal Theories
One of the main reasons that fibromyalgia is so difficult to treat effectively is the
fact that despite years of research, the definitive cause (or causes) of fibromyalgia
remain unknown. Advances in research and understanding of how the human body
transmits and processes pain signals has led to the prevailing theory that
individuals are unable to process pain signals normally.
with fibromyalgia
Research suggests may be the result of various chemical abnormalities in
that this
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 gene, or genes, may be
what
involved in the development of fibromyalgia. genes that regulate
In particular, the
brain’s ability to transmit pain signals via neurotransmitters are of particular
interest to researchers.
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General Confusion
Fibromyalgia is difficult to both define and diagnose, given the wide spectrum of
symptoms and co-morbid conditions that accompany it. In addition, fibromyalgia
is often misdiagnosed with other diseases that add to the confusion. For many
years, the medical community considered fibromyalgia to be a “whiners disease,”
discounting patients’ symptoms and suggesting their pain was all in the head. (that
ironically -
may prove to be true research has demonstrated differences in the
chemical processes in the brains of fibromyalgia patients relative to how pain
signals are amplified and processed) Unfortunately, despite the formal recognition
of fibromyalgia as a diagnosable condition by the American College of
Rheumatology and the International Classification of Diseases, many providers
continue to doubt its legitimacy as a true pathological condition.
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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.
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to treatment difficult. This can lead to increased confusion and further escalations
in the overall negative impact on the patient’s life.
causal factors and negatively-impactful environmental and life factors – can often
prove to be more complicated than calculating rocket trajectory for a NASA moon
mission. At least with NASA, the laws of physics are the same for everyone! In
fibromyalgia, there are no clinical standards; everyone’s fibromyalgia is unique.
The manner in which these factors interplay will be different for you than it is for
others.
Many symptoms
associated with
fibromyalgia are not
isolated. They interact
with each other, feeding
off of each other in a
negative manner. This
type of relationship is
known as a negative
feedback loop. Negative
feedback can best be
described as a cycle in
which an event leads to
another event, which
leads to another event,
which leads back to the
original event and so on.
The cycle continues until something happens to make it stop. For example, an
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individual with fibromyalgia may suffer from sleep impairment. This inability to
sleep adequately results in excessive daytime fatigue. This excessive fatigue
aggravates the persistent pain that the individual experiences from their
fibromyalgia. Due to the worsening pain, the individual may not be able to sleep
well. This cycle is an example of a negative feedback loop, and will not cease until
something occurs to disrupt it. That “something” might be a new treatment regime
that incorporates massage therapy, which addresses both the fatigue and relieves
the excess pain, thereby improving sleep quality.
Causal symptoms interact both with other symptoms and other causal factors. As is
illustrated in the above example, this interaction creates, fosters, and strengthens
negative feedback loops – a scenario in which a vicious circle is created.
Furthermore, the interaction of negative feedback loops and causal factors can lead
to overlapping loops, loops within loops, or loops with shared symptoms that
impact other symptoms. The ultimate result of these interactions is a downward
spiral that may cause fibromyalgia syndrome to worsen over time. Fibromyalgia is
NOT by definition a degenerative disease, however the causal impact of
symptoms and triggers can, if left unrecognized and untreated, lead to a
debilitating downward spiral and a decline in the quality of life for the
fibromyalgia patient.
Another fact that makes fibromyalgia so hard to pin down is that as negative
feedback loops progress, they can trigger or amplify secondary symptoms, which
in turn may lead to the formation of additional negative feedback loops. Certain
environmental factors can also serve the same function – though at times have the
opposite effect. Take Seasonal Affective Disorder (SAD) for example. Seasonal
Affective Disorder can lead to increased depression that feeds into other
symptoms, such as pain and poor sleep; however, as the seasons change and spring
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brings with it improved weather and sunshine, it can lessen the impact of SAD and
thus foster improvements in pain and sleep quality.
Medical System
The U.S. medical system is highly fragmented and therefore simply not designed
to effectively diagnose and treat patients who suffer from a syndrome such as
fibromyalgia. As the diagnosis of fibromyalgia can only be achieved by excluding
the presence of other conditions, different physicians may take different
approaches to reach their diagnosis. Furthermore, if a particular practitioner is in
the school of those who doubt the legitimacy of fibromyalgia as a true diagnosis,
they may bypass a diagnosis of fibromyalgia altogether in favor of treating each
individual symptom.
approach, i.e., “throwing pills at it.” This approach is not a cure, however, and
frequently it can serve to make things worse for the patient. Pharmaceutical
options are often effective; however, even in the best case, symptoms are only
partially alleviated. Improvement is maximized if the pharmaceutical drugs can be
supplemented with other treatment options.
Another aspect of the U.S. medical system that often precludes individuals from
seeking certain treatments is health insurance. Many insurance providers do not
grant approval for certain treatments, such as chiropractic or massage therapy, and
even certain medications may not be covered by some insurance plans. Therefore,
if a particular treatment approach is not “approved” by a patient’s insurance
company it may never be discussed as an option for the patient. This can have huge
ramifications for patients who may actually receive benefit from those treatments.
A massive problem is created when insurance restrictions and required approvals
drive treatment options, rather than the fibromyalgia patient and their care team.
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Insurance issues aside, doctors are in an untenable position. Due to the fact that a
multi-disciplinary approach to the treatment of fibromyalgia is typically the most
suitable, it is nearly impossible for any single health care provider to be effective in
guiding and managing a patient’s overall treatment on a long-term basis. To expect
a single doctor to be capable of this is to simply ignore the realities of both
fibromyalgia and the medical system. No doctor can be an expert in general
medicine, chiropractic, massage therapy, dietary nutrition, alternative medicine,
behavioral focused medicine and all of the many other medical specialties that can
play into treating fibromyalgia. It is not physically possible for one individual to be
the best in all of the different medical specialties that someone fighting
Fibromyalgia will want on their team. This scenario drives the reality of why a
self-management approach provides the most effective treatment. The patient must
take responsibility for directing and coordinating the efforts of all of their care
providers. Self-Management is a team approach.
As can be imagined, when coupled with the variable symptoms and the
overwhelmingly individualistic nature of the disease itself, fibromyalgia is a
nightmare for the medical system. The lack of a one-size-fits-all approach to
treatment, the need for treatments that are not often covered by routine health
insurance, and the relentless nature of the disease itself makes fibromyalgia
extremely difficult to both endure and to manage.
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Consumers and patients have been led to be believe – and have come to expect –
that there is a “Magic Pill” to cure almost every ailment out there. This cultural
phenomenon is
unfortunate, as it gives
many individuals a false
sense of security and an
inaccurate understanding
of how medicine truly
works. The unfortunate
reality is that medical
science and doctors are
neither as advanced nor as
capable as most
Americans believe them to
be. This is not a failure on
the part of the medical
community; a failure of expectations to remain aligned
it is with reality. The
doctors on TV can cure anything (and have good hair while doing it) - so surely
my doctor should be able to make me feel better.
This is particularly the case for fibromyalgia. There is no known cure for
fibromyalgia – only treatments geared toward addressing its symptoms, and many
of those treatments are only partially effective, or effective in only a percentage of
patients. Magic Pill Syndrome leads patients to believe that one particular
medication or therapy can result in a “cure” for their disease when no such cure
exists. For fibromyalgia patients, this belief drives unrealistic expectations, feeds
depression and anxiety, and contributes to the frequent confusion and lack of
understanding among family members. These false expectations are a big issue and
a major hindrance to people with fibromyalgia, and make a very complicated
disease even more complicated to manage effectively.
It is vitally important for all fibromyalgia patients to accept the reality of their
condition in order to move forward with effective treatment. There is no “magic
pill.”
The U.S. Food and Drug Administration (FDA) recently approved the drug Lyrica
for the treatment of fibromyalgia. For many Americans who do cursory research
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and depend solely upon their doctor’s guidance with regard to treatment, they may
interpret this FDA approval as meaning that the U.S. government has certified
Lyrica as a cure and thus it is the “magic pill” they are seeking. Unfortunately, this
is not the case. Lyrica is not a cure for fibromyalgia, and for those patients in
whom it is most effective, it only decreases fibromyalgia symptoms by about 40%.
In other words, Lyrica may help, but it is certainly not a “magic pill.”
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.
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As noted in the
diagram to the
left - multiple
negative
feedback loops
may function
simultaneously
feeding an
ongoing decline
in overall health
that drives a
worsening of
fibromyalgia
symptoms.
Patients should
utilize diagrams
like this to chart
and document
how
fibromyalgia is
playing out in
their own
bodies. Nothing
fancy is required
- crude diagrams
hand-drawn can
serve the same
purpose as fancy computer generated graphics. The important thing is to build a
comprehensive base of understanding relative to exactly how fibromyalgia is being
presented in your individual case.
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You are your fibromyalgia. In fact, no one else will ever be capable
unique. So is
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!
OR
Do not waste years you will find a magic cure. Do not expect that your
thinking
doctors will have all the answers for you. In fact, don’t expect anyone to have all
the answers, including you, because for fibromyalgia there are few certainties. But
that is ok; many times even an intelligent guess can have great outcomes for you.
Taking Responsibility
You must take responsibility for managing your own fibromyalgia. Taking
responsibility is not just a decision; it is an action. It means taking control. The first
step in doing so is to move from a path of dependence, confusion, hopelessness,
and fear to a path of knowledge, hope, challenge, and most importantly, action.
The action part is key. Even if you have the greatest idea or concept in history, it is
worth nothing unless you act upon it. Taking responsibility means accepting the
reality that action is required and that you are the one who must do it.
This can be a breaking point for many people, as some may not feel capable of
taking action. They may doubt their ability to take responsibility and trust their
instincts. Nonsense. You can one is better equipped or prepared than
do it! No
YOU. No one has better motivation, and no one will ever be in a position to better
observe, evaluate, and manage your fibromyalgia than you.
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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.
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skeptical and understand that treatment X may not work for you. The purpose of
educating yourself is to learn about the options that you have. The Internet is a
great place for this, but be sure to validate the information.
In contrast to the Internet, face-to-face support groups allow you to see how
fibromyalgia is playing out in the lives of others who are suffering with the
disease. Since fibromyalgia support groups are who are
comprised of individuals
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.
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.
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detail a history for how your fibromyalgia played out in the past; you are
establishing a now. Focus on what fibromyalgia is for you right
starting point right
now, your life. Make note of things you know for sure,
and how it is impacting
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 your body and mind. Formalize this
to be currently working in
material into an journal; take your time and be thorough. It may not
organized
seem process is actually a therapy in and of itself, and this
like much, but this
baseline information will form a foundation from which you can begin to measure
your ongoing progress and the effects of your treatment efforts.
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
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what skills and knowledge are required to best address your fibromyalgia, and then
seek the best individuals you can to assist you.
Take Action
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.
Finally, selected friends and family members may (or may not!) be important
elements your team. If you are fortunate to have family members who are
of
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 fromyour
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.
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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 thatyou 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!
Setting Goals
As you set your goals, remember to be specific and to set goals that can be
associated with actions.
"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.
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"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.
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.
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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.
“What possible negative interactions with other treatments should Ibe on the
lookout for?”
“How likely are these and what is the worst case scenario?”
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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!
OR
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
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Self-Empowerment
Or:
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 notevery 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 ultimatelysuccess. You should understand that failure is
drives
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!
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Self-Management Conclusion
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…)
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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 you in the right
starting point and steer
direction. The truth is that potential treatment are numerous, and the
options
process of elimination are the most effective for you
to determine which one(s)
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.
Medical Specialists
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
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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.
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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.
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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
treatment ideas.
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 you, repeat
doctor has told
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.
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FDA-Approved Pharmaceuticals
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,
www.fibromyalgia-treatment.com
Lyrica
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
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.
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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
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.
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Antidepressants
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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), many of these drugs may interact
and Silenor (doxepin). In general,
with other medications, or can become less effective with
be habit forming,
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.
Anti-Anxiety Medications
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Pain Management
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:
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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 a
might include watching
funny movie, reading a a hobby you
short book, visiting with friends, engaging in
enjoy (ifyou 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.
Dietary Supplements
The list provided below is meant to provide an overview of the main dietary
supplements commonly investigated and associated with the treatment of
fibromyalgia. no means exhaustive, as there are literally hundreds of
It is by
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-
treatment.com.
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Diet
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 gas, indigestion, constipation,
pain, bloating, 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,
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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.
Exercise
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 any noticeable benefit, whereas too much may
provide
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.
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Therapies
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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.
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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
do so.
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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 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.
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Tools
Recording your signs and symptoms on a regular basis – "collecting your data” –
will require effort. It will requiremore 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 expect.
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 away
filed
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.
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How do you analyze data that is spread out across a bunch of journals and binders?
How do youidentify 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 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.
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• Ifyour 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.
Tracking Symptoms
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.
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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
treatment options.
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 you have taken, when you
have done, what
took it, and how much. For exercise, record how long you exercised, the intensity
at which you you used to exercise (swimming,
exercised, and what method
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.
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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.
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
treatment focus!
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For example, if you undertake exercise as a treatment, you may find that you begin
to lose weight. Asyou lose weight, it may improve your depression. Improvements
inyour depression may result in further reductions in anxiety and stress, all of
which may culminate in improved pain, fatigue and other symptoms.
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 - whatyou 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
to work!
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.
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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.
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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
your fibromyalgia.
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
system:
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• 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
• Secure server with state of the art data protection capabilities for security.
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 feel the FibroTrack is by far the best means of building and
certainly
implementing an effective self-management system, please remember that it is not
required. Thepurpose of this ebook is to educate you relative to how an effective
self-management program should be structured and operated.
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
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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!
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Disclaimer
The information contained in this ebook guide is for informational purposes only.
The author is not a doctor, research scientist, medical practitioner ofany 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
related to the author of this ebook.
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,
products or services by third parties. Third Party Materials comprise of the
products and opinions expressed by their owners. As such, Ido not assume
responsibility or liability for any Third Party material or opinions.
The publication of such Third Party Materials does not constitute my guarantee of
any information, instruction, opinion, products or services contained within the
Third Party Material. Theuse of recommended Third Party Material does not
guarantee any success on any level related to medical treatment. Publication of
such Third Party Material is simply a recommendation and an expression of my
own opinion of that material.
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