FAQS Part 1, Things you Should Know (updated 10/1999)
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FAQS Part 1, Things you Should Know (updated 10/1999)
WHAT IS FIBROMYALGIA SYNDROME?
Fibromyalgia is a painful disorder that affects 2-6% of the population.
Primary symptoms of fibromyalgia are widespread aching of the muscles and
connective tissue, fatigue, and stiffness (especially acute following any period
of inactivity, such as sleeping or sitting). Other common symptoms include
muscle twitching, muscle spasms, numbness of the arms or legs, poor and/or
disordered sleep, cognitive impairment and confusion (known as brainfog or
fibrofog), depression, anxiety, irritable bowel and bladder syndrome, Reynauds
Syndrome, hypo-thyrroid, allergies, dry eyes and mouth, chemical sensitivities,
heightened sensitivity to noise, light, touch and variations in temperature;
distortions in vision and loss of hearing; reactive hypoglycemia, migraine
headaches, ringing and itching in the ears and weight gain. These symptoms vary
from person to person, and wax and wane in severity. Fibromyalgia affects more
women than men, and is seen in children and adolescents.
There is currently no cure for Fibromyalgia, and no standardized treatment
protocol.
WHAT CAUSES FIBROMYALGIA?
There is some evidence that points to Fibromyalgia having a possible hereditary
component. There are studies in progress trying to find the cause and if there
is a hereditary factor. One study indicates that fibromyalgia may be an issue
with the way the brain communicates via the central nervous system.
In individuals predisposed to the syndrome a health event such as a flu-like
illness or a physical trauma is most commonly thought to trigger the onset of
acute or debilitating fibromyalgia symptoms. It has also been thought to strike
after a period of prolonged stress or emotional trauma. Researchers have not
found a single or pathological cause, which in turn causes confusion and
hostility in some medical professionals who refuse to recognize fibromyalgia as
a disease, often referring their patients for psychiatric evaluation. Many
fibromyalgia patients report the presence of a milder version of their symptoms
long before a health event triggers the onset of acute symptomology, but some
were the picture of health.
Fibromyalgia is not a psychological disorder, nor is it a catch-all waste-
basket" diagnosis. It is considered a disease by the World Health Organization.
HOW IS FIBROMYALGIA DIAGNOSED?
A physician makes a diagnosis of fibromyalgia by checking for the characteristic
tender points. Although many general practitioners can do this test, it is
most often a Rheumatologist who makes the definitive diagnosis. If 11 of the 18
tender points are painful when pressed, and symptoms have been present for three
months and in more than one body quadrant, the diagnosis of fibromyalgia can be
made.
The diagnosis is bolstered by the presence of other, common complaints
attributable to fibromyalgia. A Rheumatologist is commonly consulted to confirm
a diagnosis of fibromyalgia because the syndrome can easily be mistaken for or
co-exist with other conditions in his specialty such as arthritis, lupus,
chronic fatigue syndrome or other auto-immune disorders. Although the care of
persons with fibromyalgia is often referred to Rheumatologists, there is little
difference between the long-term care one can receive or have coordinated by a
knowledgeable and sensitive family doctor and the more expensive rheumatological
specialist. Under no circumstances is fibromyalgia self-diagnosed. Your health
care provider should run a series of other tests using modern body imaging
equipment and blood analysis to rule out other serious diseases (including
thyroid dysfunction) that have similar symptoms.
I'VE BEEN DIAGNOSED - WHAT DO I DO NOW?
Don't panic. Fibromyalgia is not potentially disfiguring like arthritis. It is
not progressive in the sense that it constantly worsens and leads to death (like
cancer). Some people do experience a worsening of symptoms. Some do not.
Muscle weakness and atrophy can occur due to inactivity. When fibromyalgia is
treated successfully, you may experience improvement in symptoms or remission (a
temporary absence of symptoms). There is no known cure, and a treatment that
works for one may do nothing for another. Often you can regain some quality of
life when you find treatments that work for you.
WHAT KIND OF DOCTOR SHOULD I SEE?
Although rheumatologists are currently considered the specialists of choice,
this is more by accident than by training. By far the most important factors to
consider in choosing your primary or coordinating health care provider are: 1)
does he believe in it?--some doctors do not! 2) is he willing to keep up to
date with the syndrome, either on his own or by helping you evaluate new
information you may bring to his attention? 3 )is he open to a wide spectrum of
modalities and treatments? (remember--some people do not respond favorably to
any drug therapies and must look outside the traditional approach); 4) perhaps
most importantly--does he believe your complaints are of an organic nature (not
All In Your Head, or AIYH). If your doctor or health care provider fails any of
these tests, you should seek another provider.
COPY RIGHT AND CONTACT INFORMATION
The FAQs posted on this news group are copy righted by the following persons:
Ronald Martin, Nancy Leitner
Copyright 1999
This document and the FAQs, may not be re-posted, reprinted or distributed in
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Other contributors to these documents include: Jane Livingston, Julie W. Linda
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Schroeder, Dreamsmythe, and Lady Freedom.
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DISCLAIMER
All information posted here, unless otherwise cited, is based on the experience
and research of those who prepared the FAQs. We do not guarantee that
everything stated is a fact, as facts may change with time and new information.
Everyone should do their own research and make their own choices based on their
situation and medical team.
Nancy
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