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The fibromyalgia and chronic fatigue resource book and life planner workbook
Dawn Hughes, Author
The Fibromyalgia and Chronic Fatigue Resource Book
Reproduction in any form, including photocopying, in whole or in part,
without prior written permission, is prohibited by law.
The material in this document, electronic email or text cannot be guarantee for
accuracy and is not intended to replace the advice and treatment of a physician.
Any use of the information set forth herein is entirely at the reader's discretion.
The author of this document, electronic email or text will not be responsible or
liable for actions taken as a result of the opinions or information expressed within
this document, electronic email or text. Each person and situation is unique, and a
physician or other qualified health professional should be consulted if there is any
question or concern regarding the presence or treatment of any health condition.
My father, Ben Johns and his wife Jean, for
My son, Christian Hughes and his wife Andrea.
Special Thanks To:
Dr. Thomas D. Geppert M.D. for finding “My Answer”.
To All Fibromyalgia and Chronic Fatigue Patients, Researchers
Together We Will Find A Cure
Thank you to:
Why Me, Why Anyone?
Anne-Marie Vidal worked as a systems analyst for 20 years. She
was Director Management Information Services for two providers
of health care which prompted an interest in delivery of health care
in the US. She earned a Masters in Public Administration with
distinction specializing in Health Administration from Long Island
University. Ms. Vidal was a community activist regarding health,
municipal and other services in Brooklyn.
When the combination of Chronic Fatigue Syndrome and
Fibromyalgia limited her ability to work full time she became an
adjunct professor at several colleges in New York City. The
courses she taught included: Understanding Health Insurance,
Medical Office Practices, and Introduction to Microcomputers.
Although Anne-Marie writes and advocates on issues related to
invisible disabilities, Chronic Fatigue Immune Deficiency Syndrome
and Fibromyalgia, she and her wonderful, supportive husband
Dennis live in Brooklyn, NY, where they provide a home for their 4
cats. She encourages you write to her at:
E-mail: email@example.com. Bek Oberin
: Letters To Normals Who Don’t Have FMS/CFS
Bek is a 26 year old living in Melbourne, Australia. She battles with
several chronic illnesses and plans never to give up. She has
written several articles for CFS and runs several mailing lists.
Website: http://www.tertius.net.au/foothold/ Sandra Moore
Book Cover Design and Inside Illustrations
Sandra teaches beginning and intermediate Paint Shop Pro
classes at egroups. Her studio, PSP Home Studio, is located in
Arizona. For information on internet classes contact Sandra at:
TABLE OF CONTENTS
Chapter 1 - The Syndromes
What Is Fibromyalgia (FMS) Syndrome?
What Is Chronic Fatigue (CFS/ME) Syndrome?
What Causes Fibromyalgia and Chronic Fatigue Syndrome?
How Are Fibromyalgia and Chronic Fatigue Diagnosed?
Tenderpoints 4 Fibromyalgia and Chronic Fatigue Symptoms
Chapter 2 - The Resources
Where To Purchase Books Online
Fibromyalgia and Chronic Fatigue Syndrome Books
Fibromyalgia and Chronic Fatigue Booklets and Packets
Professional Medical Journals and Articles
Chapter 3 - The Support
FMS and CFS Associations - Canada
Internet: Physician and Patient Communications
Internet: Social Security and Disability
An Important Day For Those With FMS/CFS - May 12th 109 Advocacy: How To Locate Government Officials Worldwide
Advocacy: How To Locate Government Officials U.S.A.
Advocacy: Keep Up To Date and Stay Informed
Chapter 4 - The Life Planner
Emotional Support Through Family and Friends
Letters To Normals Who Don’t Have FMS/CFS
Patients Responsibility To Family and Friends
Family and Friends Responsibility To Patient
Telecommuting 180 Telecommuting Job Sites
Telecommuting and Flex Friendly Companies
Chapter 1 - THE SYNDROMES
Although CFS and FMS are differently defined syndromes, it
is likely that patients with Fibromyalgia and Chronic Fatigue
Syndrome have the same underlying disease.
What Is Fibromyalgia (FMS) Syndrome?
Fibromyalgia Syndrome (FMS) is a widespread musculoskeletal
pain and fatigue disorder for which the cause is still unknown.
Over 6 million Americans (alone), 90% of them women in the
prime of their life, suffer from FMS. Symptoms usually appear
between 20-55 years of age, but children and men are also
diagnosed with fibromyalgia syndrome. Fibromyalgia is not
deforming, degenerative, or life threatening. It is not a progressive
disorder like multiple sclerosis and it is not a mental disorder.
Fibromyalgia means pain in the bodies soft tissues ( bursa,
muscles, joints, ligaments and tendons). This soft tissue pain is
often described as aching, stabbing or burning. Severity of
symptoms fluctuate from person to person, but chronic pain is the
main symptom. FMS patients may have up to 3 times the normal
amount of substance P in their spinal fluid. Substance P tells the
body how much pain it feels. Patients also have more pain
receptors resulting in hypersensitivity to everything. In addition to
pain, the sufferer feels fatigue and general malaise or “flu-like”
symptoms on a daily basis. Fibromyalgia pain can be manageable
one moment and incapacitating the next, therefore, treatment
relies heavily on pain management and stress reduction therapies
as well as patient and family education to support the emotional
needs for living with a chronic illness.
What Is Chronic Fatigue (CFS/ME) Syndrome?
Chronic Fatigue Syndrome (CFS) is a fatigue disorder for which
the cause is still unknown. The core symptoms are general pain,
mental fogginess and fatigue. The degree of severity differs with
each patient and will also vary from day to day. The exhaustion
experienced with chronic fatigue can be completely disabling. Another common name for chronic fatigue syndrome is ME or “Myalgic Encephalomyelitis”, meaning inflammation of the central nervous system and muscles. Many people feel ME more accurately describes the severity of this chronic and debilitating illness.
What Causes Fibromyalgia and Chronic Fatigue
While the cause remain unknown, research studies support that
that FMS/CFS may be hereditary or trauma induced. FMS/CFS
may be associated with changes in muscle metabolism, such as
decreased blood flow, causing fatigue and decreased strength.
Others believe these syndromes may be triggered by an infectious
agent such as a virus in susceptible people, but no such agent has
been identified. Medical research has produced the following list
of possible causes that might play a role: Environmental
Environmental factors may play a role in developing and/or
prolonging the illness. Genetics
Several studies support the theory that FMS/CFS is an inherited
condition. Like other illnesses, it may skip generations or surface
in every one. Hypothalamic-Pituitary Adrenal (HPA) Axis
Multiple laboratory studies have suggested that the central nervous
system may play an important role. Medical studies also show
hormonal and pain mechanism abnormalities in patients.
Due in part to its similarity to chronic mononucleosis, FMS/CFS
was initially thought to be caused by a virus infection, most
probably Epstein-Barr virus (EBV). It is now clear that FMS/CFS is
not caused by EBV. It is unlikely the cause is exclusively from any
single recognized infectious disease agent including: Human
retroviruses, herpesvirus6, rubella, candida, mycoplasma or other
bornaviruses. However, the possibility remains that FMS/CFS may
have multiple causes which means some infectious agents might
play a contributory role. Immunology
It has been proposed that FMS/CFS may be caused by an
immunologic dysfunction, for example inappropriate production of
cytokines, such as interleukin-1, or altered capacity of certain
immune functions. Neurally Mediated Hypotension
Many FMS/CFS patients experience lightheadedness or worsened
fatigue when they stand for prolonged periods or when in warm
places, such as in a hot shower, possibly from autonomic
regulation of blood pressure and pulse . Non-Restorative Sleep
Lack of non-restorative deep sleep. Patients rarely reach a deep
stage 4 sleep. This is the sleep stage where our bodies heal and
release growth hormones which repair muscles and tissues. Trauma
Statistics show many sufferers experienced a trauma (like a car
accident) right before their symptoms surfaced. Whether the gene
was latent and the trauma caused the syndrome to surface is
How Are Fibromyalgia and Chronic Fatigue
FMS and CFS are difficult to diagnose, because there are no blood test results to show the illness has taken hold. CFS is diagnosed when a patient has severe prolonged fatigue for a period of six months or longer. In fibromyalgia, pain wanders to different parts of the body which often causes people to visit many doctors for the “seemingly” different ailments that they feel. Often, with the onset of muscle and/or joint pain, a sufferer will make an appointment with a Rheumatologist (or other physician) who will make a diagnoses by process of elimination.
Tenderpoints are very sore and painful nodes that can be located
in the muscles, soft tissues, tendons and ligaments. Tenderpoints
are found in specific areas and it takes someone very
knowledgeable in anatomy to be able to locate them accurately.
Sometimes pressing on these tenderpoints causes pain or tingling
to be felt in different areas of the body. When this occurs, these
points are then called triggerpoints. The radiating symptoms seem
to be coming from a different location. Tenderpoint pain may not
be obvious to the patient of fibromyalgia until the syndrome
reaches an advanced stage. This is another reason why this
illness can go undiagnosed for so long. Location of Tenderpoints
The “signature” 18 tenderpoints are located in 9 areas (both sides)
of the body. They Include:
1. The back of the head where the neck muscles connect to the
2. The muscles along the neck. 3. Trapezius muscle. The broad muscle that extends from the
4. Supraspinatus muscle. The broad muscle at the top of the
5. The second rib. This area right below the collarbone. 6. Lateral epicondyle. The area frequently referred to as the
“tennis elbow” area, located in the upper forearm.
7. Gluteus maximus. The buttock muscle. 8. Greater Trochanter. The part of the thigh bone just below the
9. Medial Knee. The tender area above the inside of the knee.
Diagram of Tenderpoints
Fibromyalgia and Chronic Fatigue Symptoms
Central Nervous System Symptoms
Inability to think clearly. FMS and CFS
Recurrent migraine or tension-type headaches are seen in about
50% of patients. FMS and CFS Decreased Libido
CFS Dizziness and Fainting
FMS and CFS Muscle Twitching
FMS and CFS Sensory Alterations
Hyper or hypersensitivity in smell, taste and hearing. FMS and
CFS Numbness and Tingling in extremities
FMS and CFS Ringing in ears ( tinnitus)
FMS and CFS Vision Changes
Prescription changes frequently. FMS and CFS Emotional Symptoms
FMS and CFS Appetite
Increase or decrease. FMS and CFS Depression
Any condition which causes chronic pain usually has depression as
a symptom. Depression medications are often prescribed. FMS
FMS and CFS Mood Swings
FMS and CFS Suicidal Thoughts
FMS and CFS Equilibrium Symptoms
Staggering and clumsy walking.
FMS and CFS
FMS and CFS
Distance perception and not being able to clearly see what you are
looking at. FMS and CFS
FMS and CFS General Symptoms
FMS and CFS
CFS Dry Eyes and Mouth
This symptom can be mild in some patients and incapacitating in
others. FMS and CFS
Flu Like Symptoms
FMS and CFS Frequent Urination
CFS General Malaise
FMS and CFS Hair Loss
FMS and CFS Irritable Bowel Syndrome
Alternating constipation, diarrhea, frequent abdominal pain,
bloating and abdominal gas. FMS Low Blood Pressure
CFS Low Grade Fever
CFS Mitral Valve Prolapse (MVP).
MVP is a condition where one of the heart valves bulge out during
a heartbeat. This may cause an abnormal heart rhythm, but is no
indication of heart trouble or disease. This valve is mostly
connective tissue, which may be affected by fibromyalgia. FMS Morning Stiffness
FMS and CFS Nightsweats
CFS Shortness of Breath
CFS Soar Throat
CFS Temperature Sensitivity
Feeling hot or cold no matter what the temperature is. Extreme
hot or cold weather can worsen symptoms. Also sensitivity to cold,
damp or humid conditions. CFS Tender Lymph Nodes
In the neck or armpit.
CFS Thyroid Inflammation
CFS TMJ - Temporomandibular Joint Dysfunction Syndrome
This syndrome, sometimes referred to as TMJD, causes
tremendous face and head pain in one quarter of fibromyalgia
patients. Symptoms with this condition may be related to the
muscles and ligaments surrounding the joint and not necessarily
the joint itself. FMS and CFS
Multiple Chemical Sensitivity Syndrome
Sensitivities to bright lights, foods, noise and medications. FMS
Pain Symptoms Abdominal Pain
FMS and CFS Chest Pain
FMS and CFS Chronic Pain
FMS Feeling like arms and legs are tied to concrete blocks
FMS General Body Pain
FMS and CFS Joint Pain
Without redness or swelling.
FMS and CFS Muscle Pain and Weakness
FMS and CFS Tenderpoint (and triggerpoint pain or tenderness)
FMS Sleep Symptoms
Poor sleep is a hallmark for these syndromes. Most patients have
an associated sleep disorder that prevents them from reaching a
deep (stage 4) sleep level. Stage 4 sleep is when our body
releases growth hormones that chemically replenish and repair
body tissues. It should be noted that most patients diagnosed with
chronic fatigue syndrome have the same alpha-EEG sleep pattern
as some fibromyalgia-diagnosed patients. Sleeping aids are a
normal course of action for treatment. FMS and CFS Abnormal Brain Activity In Stage 4 Sleep
FMS and CFS Alternating Sleep and Waking Patterns
FMS and CFS Difficulty Falling Asleep
FMS and CFS Excessive Sleeping
FMS and CFS Non-Restorative Sleep
FMS and CFS Restless Leg Syndrome
FMS and CFS
The goal in the treatment for FMS/CFS patients is to lead the most
pain free lifestyle possible. In addition to medications, lifestyle
changes that teach stress and pain relief are essential to minimize
pain and fatigue. Many physical activities can cause flare ups and
pain. In FMS, moderate activity becomes strenuous, and is likely
to result in increased pain. Any body movement that causes the
muscles to have a “sustained contraction” will result in pain.
Everyday activities that cause sustained contraction include:
Changing a light bulb, computer work, lifting, putting groceries
away and virtually any stance that requires reaching up with your
arms. Your doctor may recommend therapeutic exercises to
improve your physical condition. Occupational Therapy
Activities of daily living are more difficult. Occupational Therapy
helps one become as independent as possible by teaching new
ways to perform tasks that minimize pain. Research shows
patients take up to 30% longer to complete a daily living task.
Daily activities like house cleaning, dressing, and bathing can be
performed to better suit the limitations caused by this illness. It is
important to remember that changing personal habits and the way
daily activities are performed requires repetition and practice. A
therapist can help the individual plan goals to build strength,
coordination, endurance and cognitive function through activities
which are part of his or her daily routine. Physical Therapy
Patient education usually includes Physical Therapy. Improper
exercise will increase pain and cause unnecessary discomfort.
Learning how to exercise properly is crucial to pain management.
FMS patients have decreased oxygen supply to their muscles, so
when muscles contract, less energy is available to sustain these
contractions. The combination of decreased oxygen and energy
lead to muscle pain. Therapy is designed to condition the muscles
and reduce pain. Physical Therapy teaches a wide variety of
appropriate exercise treatments including mobility and low impact
water exercises. A physical therapist can explain other therapeutic
options like massage and hot and cold therapy for patient comfort.
Treatments are geared toward improving the quality of sleep and
sleeping aids are commonly prescribed. It is believed that
fibromyalgia and chronic fatigue sufferers never reach a deep level
of sleep. Because deep level (stage 4) sleep is so crucial for many
body functions, such as tissue repair and antibody production,
providing the best sleep possible is a priority in the treatment of
these syndromes. Warm Water Therapy
FMS/CFS patients find water means “freedom”. Body weight is
buoyed and this reduces stress on muscles and joints. Exercising
in water improves the fitness of your heart and lungs, tones the
body and reduces fat. The water must be warm, as cold water
creates discomfort. You can incorporate every kind of exercise in
water therapy: aerobic, flexibility, range of motion and
Alternative therapy means an approach to solving a health problem
that's different from those used by conventional practitioners of
western medicine. It would be more accurate to call some of these
therapies complementary, since they complement - rather than
replace - conventional medical practice. Following are
complementary therapeutic options that promote general
wellbeing, mentally, emotionally and/or physically. Many people
with chronic pain seek alternative therapies to obtain relief from
their pain, in their effort to lead the most comfortable life possible. Acupuncture
Is a Chinese medicine. Most people picture acupuncture as a
therapy that uses thin needles, but there are several different
methods that can be used to stimulate the more than 300
acupuncture points that lie along the meridians. Some methods
used include : Heat, herbs, magnets, pressure and laser.
Acupuncture treats pain, and maintains health by stimulating points
located on channels of energy running along the body (meridians).
Each channel carries Chi (life force) and is linked to a specific
organ and different emotion. If these channels become blocked or
stagnated then pain and disease occurs. The stimulation used,
unblocks the meridians and restore the flow of Chi. Patients are
treated as a whole with the understanding that all symptoms and
signs within one person interrelate and influence each other. Chiropractic Care
Is a branch of the healing arts which is concerned with human
health and disease processes. Doctors of Chiropractic are
physicians who consider man as an integrated being and give
special attention to the physiological and biochemical aspects
including: Structural, spinal, musculoskeletal, neurological,
vascular, nutritional, emotional and environmental relationships.
Chiropractic treatment is geared toward, dietary changes,
nutritional enhancement, postural changes, physical therapies
(heat, ice, light massage, etc.), spinal manipulation and stress
Massage relaxes muscles which improve circulation and decrease
pain. Massage stretches muscle fibers and increases flexibility. It
is one of the most soothing and comforting treatments for mental
and physical relief.
Sinequan Nortriptyline Pamelor
Tylenol Irritable bladder
Urised Irritable bowel syndrome
Librax Muscle Relaxants
Zanaflex Pain Relief
Ultram Restless legs
Support Of Chronic Pain Medications
Pain is a personal experience which means it can not be
measured. Pain can be emotionally crippling and is also the cause
of many psychological problems, such as feelings of anxiety, fear,
depression, hopelessness and low self-esteem. While concern for
the long term effects of daily intakes of pain medications is valid, it
is also important to understand that chronic pain sufferers have to
manage life in a much different way then a person without daily
pain. Medications are a personal decision between the patient and
doctor, for some, unrelieved pain has many other negative health
consequences including, but not limited to: Blood clotting,
decreased mobility, delayed healing, increased stress, hormonal
imbalances, impaired immune system and gastrointestinal
functioning, loss of appetite, nonrestorative sleep, water retention,
and needless suffering.
Chronic Pain Medication Resources
http://archive.abcnews.go.com/sections/newsuse/nl_stadol_narc/ Chronic Pain Relief Coalition (CPRC
The only federally funded arthritis rehabilitation research and
training center in the country.
Missouri Arthritis Rehabilitation Research and Training Center
130 A P Green, DC330.00
One Hospital Drive
Columbia, MO 65212
Website: http://www.muhealth.org/~arthritis/marrtc.html Mayo Clinic
Reassessing the role of morphine and other narcotics. Call for the
location nearest you.
4500 San Pablo Road
Jacksonville, FL 32224
http://www.mayohealth.org/mayo/9710/htm/morphine.htm The Painful Dilemma
The Use of Narcotics for the Treatment of Chronic Pain
Prescription Drug Resources
Directory of Prescription Drug Patient Assistance Programs
It has been a long-standing tradition for pharmaceutical companies
to provide prescription medicines free of charge to physicians
whose patients might not otherwise have access to necessary
medicines. This website provides a list of pharmaceutical
companies that participate in programs.
Prescription Website Guide
Online guide to more than 9,000 prescription and over-the-counter
medications provided by the United States Pharmacopoeia (USP).
Prescription Drug Handbook
Published by The Association of American Retired Persons.
AARP has recently revised its Prescription Drug Handbook, which
is a guide to medications frequently prescribed for older people.
The handbook describes nearly 1,000 brand name and generic
drugs, over-the-counter medications and vitamins.
601 E St. NW
Washington, DC 20049
E-mail: firstname.lastname@example.org Prescription Drug Programs
Free Medication Program (for low income patients).
The Medicine Program
m.com%2F American Pharmaceutical Association
- Pharmacy and You -
Information resource on pharmacists, medication and drug
American Pharmaceutical Association
2215 Constitution Avenue, NW
Washington, DC 20037-2985
The American Pharmaceutical Association's Guide to
Author: Donald Sullivan, Ph.D., RPH
Are the prescription drugs you're taking safe? Written in clear,
easy-to-understand language, this book provides the most up-to-
date information you need to know about the most commonly
The Medical Letter
The Medical Letter on Drugs and Therapeutics is an independent,
peer-reviewed, non-profit publication that offers unbiased critical
evaluations of drugs - with special emphasis on new drugs - to
physicians and other members of the health professions.
Occasionally, the Medical Letter publishes an article on an entire
class of drugs, a new non-drug treatment or a new diagnostic aid.
The Medical Letter
1000 Main Street
New Rochelle, N.Y. 10801-7537
Website: http://www.medletter.com ME-NET: International Drug and Pharmacy Resources
Dr. Marc-Alexander Fluks
de Bosch Kemperpad 136
1054 PM Amsterdam
Phone: +31 (0)20-6189095
Fax: +31 (0)20-7782300
Researchers have several theories about what triggers these
syndromes including, central nervous system injury, changes in
muscle metabolism, or an infectious virus agent. Support of
fundamental research is extremely important, because it is
impossible to know which area will produce the next important
discovery. Discoveries can come from research funded in a
variety of areas. For example, the National Institutes of Health
(NIH) supports pain research at different levels--from the cell,
gene, molecule, and organ to the human organism itself. Since
not all the outcomes can be anticipated, and it is hard to know
where scientific advances will come from, NIAMS strives to
support and maintain a diverse research portfolio. This is
especially important in fibromyalgia/chronic fatigue, where many
areas are being developed simultaneously. Contact FMS/CFS
Associations to make research contributions.
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