Living with Fibromyalgia
Nearly 4 million
Americans-most of them women-suffer from this mysterious
ailment.
By Paula Dranov
"Day-to-day living: My doctor
recommended changes in my diet-more fiber, fruits and vegetables
and less sugar, fat and processed foods-and suggested that I
keep a daily journal to track my symptoms. She also told me that
I had to exercise. I thought, exercise? I could hardly get out
of bed! But I signed up for water exercises at the local Y and
agreed to walk for at least 10 minutes a day." |
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Health & Fitness
Fibromyalgia
Below is a description of fibromyalgia
syndrome (FMS), but because of its substantial symptom overlap
with chronic fatigue syndrome (CFS), it can be viewed as
applying to chronic fatigue syndrome patients as well.
WHAT IS FIBROMYALGIA SYNDROME?
FMS (fibromyalgia syndrome) is a widespread musculoskeletal pain
and fatigue disorder for which the cause is still unknown.
Fibromyalgia means pain in the muscles, ligaments and
tendons--the fibrous tissues in the body. FMS used to be called
fibrositis, implying that there was inflammation in the muscles,
but research later proved that inflammation did not exist.
Most patients with fibromyalgia say that they ache all over.
Their muscles may feel like they have been pulled or overworked.
Sometimes the muscles twitch and at other times they burn. More
women than men are afflicted with fibromyalgia, but it shows up
in people of all ages.
To help your family and friends relate to your condition, have
them think back to the last time they had a bad flu. Every
muscle in their body shouted out in pain. In addition, they felt
devoid of energy as though someone had unplugged their power
supply. While the severity of symptoms fluctuate from person to
person, FMS may resemble a post-viral state and this is why
several experts in the field of FMS and CFS believe that these
two syndromes are one and the same.
SYMPTOMS AND ASSOCIATED SYNDROMES
Pain - The pain of fibromyalgia has no boundaries. People
describe the pain as deep muscular aching, burning, throbbing,
shooting and stabbing. Quite often, the pain and stiffness are
worse in the morning and you may hurt more in muscle groups that
are used repetitively.
Fatigue - This symptom can be mild in some patients and
yet incapacitating in others. The fatigue has been described as
"brain fatigue" in which patients feel totally drained of
energy. Many patients depict this situation by saying that they
feel as though their arms and legs are tied to concrete blocks,
and they have difficulty concentrating.
Sleep disorder - Most fibromyalgia patients have an
associated sleep disorder called the alpha-EEG anomaly. This
condition was uncovered in a sleep lab with the aid of a machine
which recorded the brain waves of patients during sleep.
Researchers found that fibromyalgia syndrome patients could fall
asleep without much trouble, but their deep level (or stage 4)
sleep was constantly interrupted by bursts of awake-like brain
activity. Patients appeared to spend the night with one foot in
sleep and the other one out of it. In most cases, a physician
doesn't have to order expensive sleep lab tests to determine if
you have disturbed sleep. If you wake up feeling as though you
have just been run over by a Mack truck--what doctors refer to
as unrefreshed sleep--it is reasonable for your physician to
assume that you have a sleep disorder. It should be noted that
most patients diagnosed with chronic fatigue syndrome have the
same alpha-EEG sleep pattern and some fibromyalgia-diagnosed
patients have been found to have other sleep disorders, such as
sleep myoclonus or PLMS (nighttime jerking of the arms and
legs), restless leg syndrome and bruxism (teeth grinding). The
sleep pattern for clinically depressed patients is distinctly
different from that found in FMS or CFS.
Irritable Bowel Syndrome - Constipation, diarrhea,
frequent abdominal pain, abdominal gas and nausea represent
symptoms frequently found in roughly 40% to 70% of fibromyalgia
patients.
Chronic headaches - Recurrent migraine or tension-type
headaches are seen in about 50% of fibromyalgia patients and can
pose as a major problem in coping for this patient group.
Temporomandibular Joint Dysfunction Syndrome - This
syndrome, sometimes referred to as TMJD, causes tremendous face
and head pain in one quarter of FMS patients. However, a 1997
report indicates that as many as 90% of fibromyalgia patients
may have jaw and facial tenderness that could produce, at least
intermittently, symptoms of TMJD. Most of the problems
associated with this condition are thought to be related to the
muscles and ligaments surrounding the joint and not necessarily
the joint itself.
Multiple Chemical Sensitivity Syndrome - Sensitivities to
odors, noise, bright lights, medications and various foods is
common in roughly 50% of FMS or CFS patients.
Other common symptoms - Painful menstrual periods (dysmenorrhea),
chest pain, morning stiffness, cognitive or memory impairment,
numbness and tingling sensations, muscle twitching, irritable
bladder, the feeling of swollen extremities, skin sensitivities,
dry eyes and mouth, frequent changes in eye prescription,
dizziness, and impaired coordination can occur.
Aggravating factors - Changes in weather, cold or drafty
environments, hormonal fluctuations (premenstrual and menopausal
states), stress, depression, anxiety and over-exertion can all
contribute to symptom flare-ups.
POSSIBLE CAUSES
The cause of fibromyalgia and chronic fatigue syndrome remains
elusive, but there are many triggering events thought to
precipitate its onset. A few examples would be an infection
(viral or bacterial), an automobile accident or the development
of another disorder, such as rheumatoid arthritis, lupus, or
hypothyroidism. These triggering events probably don't cause
FMS, but rather, they may awaken an underlying physiological
abnormality that's already present in the form of genetic
predisposition.
What could this abnormality be? Theories pertaining to
alterations in neurotransmitter regulation (particularly
serotonin and norepinephrine, and substance P), immune system
function, sleep physiology, and hormonal control are under
investigation. Substance P is a pain neurotransmitter that has
been found by repeat studies to be elevated threefold in the
spinal fluid of fibromyalgia patients. Two hormones that have
been shown to be abnormal are cortisol and growth hormone. In
addition, modern brain imaging techniques are being used to
explore various aspects of brain function--while the structure
may be intact, there is likely a dysregulation in the way the
brain operates. The body's response to exercise, stress and
simple alterations in position (vertical versus horizontal) are
also being evaluated to determine if the autonomic nervous
system is not working properly. Your body uses many
neurotransmitters, such as norepinephrine and epinephrine, to
regulate your heart, lungs and other vital organs that you don't
have to consciously think about. Ironically, many of the drugs
prescribed for FMS/CFS may have a favorable impact on these
transmitters as well.
COMMON TREATMENTS
Traditional treatments are geared toward improving the quality
of sleep, as well as reducing pain. Because deep level (stage 4)
sleep is so crucial for many body functions, such as tissue
repair, antibody production, and perhaps even the regulation of
various neurotransmitters, hormones and immune system chemicals,
the sleep disorders that frequently occur in fibromyalgia and
chronic fatigue patients are thought to be a major contributing
factor to the symptoms of this condition. Medicines that boost
your body's level of serotonin and norepinephrine--neurotransmitters
that modulate sleep, pain and immune system function--are
commonly prescribed. Examples of drugs in this category would
include Elavil, Flexeril, Sinequan, Paxil, Serzone, Xanax and
Klonopin. A low dose of one of these medications may be of help.
In addition, nonsteroidal, anti-inflammatory drugs (NSAIDs) like
ibuprofen may also be beneficial. Most patients will probably
need to use other treatment methods as well, such as trigger
point injections with lidocaine, physical therapy, acupuncture,
acupressure, relaxation techniques, osteopathic manipulation,
chiropractic care, therapeutic massage, or a gentle exercise
program.
WHAT IS THE PROGNOSIS?
Long term follow-up studies on fibromyalgia syndrome have shown
that it is chronic, but the symptoms may wax and wane. The
impact that FMS can have on daily-living activities, including
the ability to work a full-time job, differs among patients.
Overall, studies have shown that fibromyalgia can be equally as
disabling as rheumatoid arthritis. On the other hand, follow-up
of people meeting the chronic fatigue sydnrome criteria
indicates that as many as 40% may significantly improve but few
are thought to completely recover from this syndrome. Longer
term follow-up studies are not available to indicate whether
these "improved" CFS patients later relapse with an increase in
symptoms. A preliminary follow-up study by the CDC (Centers for
Disease Control) reveals that for those individuals with chronic
fatigue syndrome who do not recover or significantly improve
after five years duration, their most prominent symptom changes
from fatigue to muscle pain with concentration problems (sounds
a lot like the permanent syndrome of fibromyalgia but the CDC is
not checking patients for tender points).
According to a research study by Dedra Buchwald, M.D., people
who meet the criteria for both FMS and CFS tend to be at the
more severe end of the spectrum of symptoms and are more likely
to become work-disabled. Buchwald says her findings underscore
the importance of recognizing concurrent fibromyalgia and
chronic fatigue syndrome (Rheumatic Disease Clinics of North
America 22(2):219-243, 1996).
Source:
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Worksheet.
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