Do you suffer from persistent pain? aching?
fatigue?
These are all symptoms of a little known condition called Fibromyalgia
Syndrome. Fibromyalgia Syndrome affects a 2-6% of the population,
predominantly women, and is seen in all age groups, including young children.
This condition is characterized by generalized pain or aching in the connective
tissues, poor sleep quality, and numerous other symptoms. This condition
is referred to as a syndrome because the symptoms occur in combination.
People with Fibromyalgia Syndrome often liken the condition to having a
very bad case of the flu or having been run over by truck.
Many health care professionals familiar with Fibromyalgia Syndrome suspect
that it and the following conditions are related:
-
Chronic Fatigue Syndrome
-
Multiple Chemical Sensitivity Syndrome
-
Gulf War Syndrome
For purposes of this pamphlet, we will refer to the above as chronic syndromes.
Although these chronic syndromes can be severe, and often disabling,
conditions that affect vast numbers of people, they are often overlooked
or given limited attention in facilities that train medical professionals.
Because of this, many people with these chronic syndromes find themselves
inappropriately referred for psychiatric evaluation. These syndromes
are also frequently misdiagnosed because their symptoms mimic those of
other serious conditions, such as rheumatoid arthritis, lupus, or other
auto-immune diseases (i.e., the body's tissue is attacked by the body's
own defense system, which mistakes it for foreign material). These
chronic syndromes are not considered to be inflammatory or auto-immune
disorders since no permanent damage is done to the body. Auto-immune
disorders, however, can co-exist with these chronic syndromes. The
syndromes are also considered non progressive, although symptoms may worsen
after onset if appropriate treatment is not undertaken. Before a
diagnosis of one of the syndromes can be made, other illnesses, such as
those mentioned above, should be considered by your physician.
Although Fibromyalgia Syndrome is the only one of the syndromes with
a diagnostic test at this time, an alert, competent and supportive medical
professional who is familiar with the syndrome can, along with taking a
careful and comprehensive history, make an educated diagnosis. For
Fibromyalgia Syndrome, your doctor can conduct a simple "tender point"
exam. If eleven of the eighteen specific tender points on the body
hurt when pressed, and aching or pain has persisted for more than three
months, the diagnosis is confirmed.
The cause of these syndromes is not known. There's some evidence
that the predisposition is hereditary. These chronic syndromes appear
to be triggered in susceptible individuals by a food like illness, stress,
abuse (emotional or physical), or trauma (such as auto accident).
It is important to note that these are not psychological disorders.
Studies have demonstrated that people with these chronic syndromes are
no more likely to have psychological problems than others with chronic
pain or fatigue.
Severity of symptoms varies from person to person, as does response
to treatment. These symptoms, which can fluctuate from day-to-day,
include, but are not limited to:
-
Pain (often debilitating)
-
Widespread body aches
-
Non-restorative sleep
-
Fatigue (sometimes severe)
-
Lack of energy
-
Depression
-
Anxiety
-
Numbness or tingling in the arms or legs
-
Migraine headaches
-
Tension headaches
-
Irritable bowel
-
Irritable bladder
-
Cold intolerance
-
Restless legs
-
Cognitive problems
-
Irritability
-
Vision problems
-
Sinus problems
-
Allergies
-
Dryness of the eyes and mouth
-
Tinnitus (ringing in the ears)
-
Fluctuating hearing loss
-
Heightened sensitivity (to food, meds, light, etc.)
The Myofascial Pain Syndrome (MPS) Connection: This
condition, in which pain may be extreme, can develop in muscles that are
over stressed, overused or injured and is characterized by localized
"trigger points", which are different from the " tender points" of Fibromyalgia
Syndrome. People with these chronic syndromes may also develop Myofascial
Pain Syndrome. MPS pain from trigger points, which refer pain to
other locations, is mechanical in nature. Generalized aching
of these chronic syndromes is biochemical and systemic in nature.
Many patients meet the criteria for both, in which case it is important
that both be treated appropriately. MPS is treatable by strategies
including trigger point injections, massage therapy, daily stretching,
and the elimination of stressors. Proper identification and treatment
of MPS is of great benefit in reducing many symptoms incorrectly attributed
to these chronic syndromes. A physician knowledgeable about trigger
and tender points will be able to distinguish between them reliably.
Of physical medicine doctor or a licensed massage therapist familiar with
Travell and Simons Trigger Point Manuals is the most competent health care
professional to help relieve or eliminate trigger points.
With proper treatment, many people with these chronic syndromes can
learn to manage their symptoms, thereby lessening their pain and fatigue.
The first symptom generally treated is the problem of insufficient deep,
quality sleep. When quality sleep is achieved, the pain level often
and decreases, since tissue healing takes place during deep restorative
sleep. Certain medications have been found to be effective in improving
the quality of sleep. Other medications have been found helpful in
treating the depression and anxiety which often occurs in conjunction with
these chronic syndromes. People with these syndromes frequently have
unusual reactions to medications. Often, finding the right medication
is a process of trial and error, which can be time-consuming and frustrating.
However, it is very important that you and your physician actively worked
together in finding the right medication or combination of medications.
Experts agree that stretching and gentle aerobic exercise are essential.
Walking, pool therapy and stationary exercise equipment are most suitable
for people with these chronic syndromes. The optimum time of day
for aerobic exercise is believed to be approximately five hours before
bedtime. If this is not feasible, any time of day would be beneficial.
Stretching can and should be done several times a day - simple things like
shoulder rotation can be done in almost any setting. It is important
that stretching be a part of the everyday activities of people with these
chronic syndromes, since the muscles and been contracted. Frequently
muscle tone has suffered as a result of inactivity or improper body mechanics.
It is important that repetitive exercises not be performed, since
these can exacerbate the pain. Those people who cannot tolerate aerobic
exercise may respond better to a program of simple basic stretches.
Many people with severe pain have found water therapy in a heated pool
provides some relief. Most importantly, people with these chronic
syndromes need to listen to their bodies and not push too hard. A
general rule of thumb is, "always stop exercising while you still could
do a little more ".
Also helpful for some people with these chronic syndromes are massage
done by a person familiar with the conditions, warm and soothing baths,
relaxation techniques, stress reduction, upper body mechanics and posture,
acupuncture, chiropractic, meditation, biofeedback, and a healthy diet.
It is important to find the treatment, or combination of treatments, that
is most effective for each person, since none are effective for all people
with these chronic syndromes.
It is also important to avoid stressful situations, since stress intensifies
symptoms. This may require lifestyle changes. The symptoms
wax and wax, and many people with these chronic syndromes find it difficult
to slow down and be gentle with themselves when they are feeling better.
People with these chronic syndromes who are Type A personalities
may mistakenly believe that they can push through the pain and fatigue,
which can lead to a "flare" -- a worsening of symptoms.
Help resources include books, videos, newsletters, and local and Internet
support groups. Support groups are especially useful for people with
these chronic syndromes, since their condition is often invisible to their
families, significant others, friends and coworkers to whom they "look
normal". In order to better cope with the sometimes debilitating
conditions, people with these chronic syndromes need all the help and support
they can get from others who understand what they're experiencing.
Learning more about these conditions will enable you to be your own best
champion.
Persevere--there is much research being done.
The Chronic Syndrome Support Association, Inc. is a 501 (c) 3
nonprofit corporation. It was founded in order to educate the general
population and health care professionals who lack current knowledge of
the research being done and potential research that needs to be done, on
these serious, yet invisible, conditions. It is our goal to promote
awareness of these conditions, and in the process we hope to contribute
to the growing body of knowledge about them.
If you believe you may have one of the syndromes, seek the assistance
of a supportive health care professional who is familiar with these chronic
syndromes and their treatments.
We hope this pamphlet has provided a measure of education for you.
If you would like more information about these chronic syndromes, The
Chronic Syndrome Support Association, Inc. publishes a quarterly newsletter,
The SYNDROME Sentinel, which contains articles written by health care professionals
working with these conditions. Our contributors include traditional
and alternative experts, as well as personal stories from people with these
chronic syndromes and their significant others. It also features
regular columns, such as "The Doctor Is In" and "Connie on
Coping". If you have questions about a type of therapy, we will attempt
to get answers for you.
Annual cost for membership is $25.00, $30.00 in U.S. dollars by money
order outside the U.S. If you would like to subscribe to the newsletter,
please send your name and address, with your check or money order, to The
Chronic Syndrome Support Association, Inc., One School Street, Suite
403, Arlington, MA 02476-6152 USA. Tax-deductible donations are welcomed.
Phone/fax: (781) 646-6174 Email: cssa@shore.net
Visit our website at: http://www.shore.net/~cssa
copyright 1998 aquatic syndrome support association, he all rights reserved
a
Permission is granted to copy this pamphlet for general distribution
provided it is reproduced intact and in its entirety.
