By Tom Hennessy, Nancy Solo, Paula Carnes & Chip Davis
DO YOU SUFFER FROM PERSISTENT
Pain? Aching?
FATIGUE?
These are all symptoms of little-known conditions
that go by the names of ME (myalgic encephalomyeletis, used in most of the world)/CFS
(chronic fatigue syndrome, used in the U.S.), FMS (fibromyalgia syndrome), MCS (multiple
chemical sensitivity syndrome), and GWS (gulf war syndrome). These syndromes affect
significant numbers of the population, predominantly women, and are seen in all age
groups, including young children. These conditions are characterized by generalized
pain or aching in the connective tissues, poor sleep quality, and numerous other
symptoms. These conditions are referred to as syndromes because the symptoms occur
in combination. People often liken the conditions to having a very bad case of the
flu or having been run over by a truck.
Many health-care professionals familiar with these
syndrome suspect that they are related. For purposes of this page, we will refer to
all of 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. These syndromes are also considered nonprogressive,
although symptoms may worsen after onset if appropriate treatment is not undertaken.
Before a diagnosis of one of these 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 these
syndromes with a diagnostic test at this time, an alert, competent and supportive medical
professional who is familiar with these syndromes 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 11 of the 18 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
is some evidence that the predisposition is hereditary. These chronic syndromes
appear to be triggered in susceptible individuals by a flu-like illness, stress, abuse
(emotional or physical), or trauma (such as an 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 or mouth
Tinnitus (ringing in the ears)
Fluctuating hearing loss
Heightened sensitivities (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 overstressed, 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). 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. A physical medicine doctor or 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 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 health-care team
actively work together in finding the right treatment or combination of treatments.
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 every-day activities
of people with these chronic syndromes, since the muscles have 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 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, proper 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 wane, 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.
Helpful 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 co-workers to whom they “look
normal”. In order to better cope with these sometimes debilitating conditions,
people with these chronic syndromes need all the help and support they can get from others
who understand what they are experiencing. Learning more about these conditions will
enable you to be your own best champion.
Copyright © The Chronic Syndrome Support Assn, Inc. All
rights reserved.
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