“I was beginning to think I was loosing it. I couldn’t think straight,
I couldn’t sleep, and the constant nagging pain was taking it’s toll on
me both physically and emotionally. Then, when doctor after doctor
simply shook their heads, patted my arm condescendingly, and said I should
be relieved to learn there was nothing wrong with me, I figured, hey, maybe
it is all in my head.” Mary B. - age 47
“I’ve have run out of ways to describe the pain, and even my best friends
are getting tired of my yawning in their faces. I ache all over,
I have absolutely no energy or enthusiasm about anything anymore, and no
one can figure out what’s wrong with me. Even I am getting tired
of listening to myself whine about how absolutely awful I feel all the
time.” Kathy S. - age 38
“I don’t know what’s worse...feeling rotten all the time, or people
thinking it’s all in my head. I’ve been healthy all my life and suddenly
I can’t get up off the couch without shooting pains in my knees and hips.
My chest hurts, my back hurts, my neck hurts, my stomach is upset way too
often, and I have an overwhelming sense of fatigue most of the time.
I’m tired of people telling me I’m just stressed out. To top it all
off, I know this is beginning to impact my performance at work. I
try to leave all this ‘at home,’ but it’s getting harder and harder to
do that.” Faye - age 41
Imagine being one of the estimated 7-10 million Americans who often
suffer from debilitating pain, chronic fatigue, and mounting anxiety.
On their road to diagnosis, they waited for the results of an endless variety
of medical tests, withstood a lot of skepticism and sometimes outright
ridicule about their aches and pains, and yet managed to clutch a shred
of hope that the next test would finally reveal all the answers and offer
an end to the frustrating symptoms. Their scenario gets worse, however,
before it gets better. For this disorder there are no blood tests
or x-rays or scans to confirm or deny a diagnosis, and -- while most of
the sufferers are women between the ages of 20 and 50 -- there are no specific
age or ethnic indicators that typify those at risk. To complicate
things even further, not everyone experiences the same symptoms, or has
them all the time. There are also about 12 million people who share
these symptoms who remain undiagnosed because of its elusive nature.
These people suffer from Fibromyalgia Syndrome (FMS)-- called a syndrome
because it is not one specific illness or disease, but rather a condition
entangling several symptoms that occur coincidentally. The disorder
causes widespread and chronic body pain which originates in the muscles.
While many sufferers say their “joints ache,” Fibromyalgia is not a form
of arthritis at all, and it will not cause the gnarly joint deformities
often associated with that disease. There are, however, some
very specific points -- called “tender points” or “trigger points” -- that
are the epicenters of the pain and discomfort. In fact, a “mapping”
of these points are the foundation for making the FMS diagnosis.
Fibromyalgia differs significantly from the medley of aches and pains
that seem to go along with normal aging. Certainly if you are experiencing
some localized pain -- from too much exercise or exertion, for example
-- you might loose a little sleep. People with FMS, on the other
hand, are often more chronically sleep deprived; they are never completely
rested, refreshed or renewed. To make matters worse, they also regularly
suffer from headaches, swollen and tender lymph glands, numbness and tingling
sensations, Irritable Bowel (or Bladder) Syndrome, mood swings, depression,
restless leg syndrome, and intolerance to heat or cold. No question
about it... experiencing a persistent combination of these symptoms --
coupled with the fact that no one knows what causes FMS -- and having everyone
think it was all in your head could tend to make a person cranky and despondent.
The good news is that FMS patients do not become crippled from the disorder,
and there is no evidence that their life expectancy is shortened.
Balancing quantity and quality of life is a very subjective thing.
For many people with this chronic ailment, the constant pain and fatigue,
high medical costs with little or no results, overall stress and anxiety
can certainly influence the way they cope with it in the long run.
People with FMS can expect some good days, some very good days, as well
as some bad and even worse days. Perhaps they can take some encouragement
from the fact that FMS is not a harbinger for some more severe or serious
disease like MS or lupus, but even that consolation doesn’t make up for
the really bad spells when doing anything at all requires supreme effort.
Reaching a Diagnosis...
To say that Fibromyalgia is difficult to diagnose is an extreme understatement.
A patient seeing her doctor for a check up might report having frequent
headaches, dizziness, fluid retention, crampy abdominal or pelvic pain,
diarrhea, problems with remembering things, a feeling of anxiety, and being
achy and stiff all over. Top the list off with her complaint about
being just plain exhausted.
Approaching menopause? Anemia, or perhaps a thyroid condition?
The blood and lab tests all come back negative for anything that might
produce these symptoms, and x-rays show no joint problems. Where
do you go from there?
It is not surprising that FMS has been incorrectly thought to be a psychosomatic
or inflammatory condition. No connection with arthritis has been
discovered, however, and it is now believed that depression or anxiety
once thought to cause FMS, is more accurately the result of the chronic,
painful condition. There is some evidence that FMS might be due to
an abnormality of deep sleep which could account for the reduction of an
important hormone (somatostatin) essential to maintaining good muscle health.
Ongoing scientific studies, which were discussed in Congressional testimony
in 1998 to encourage additional funding for FMS research, suggested that
two neurologically important substances known to be involved in the generation
of persistent pain have turned up in pathologically high concentrations
in the central nervous system of individuals with FMS. This indicates
that Fibromyalgia may well be a central nervous system disorder rather
than a musculoskeletal disorder.
Research under the aegis of the National Institute of Arthritis and
Musculoskeletal and Skin Diseases (NIAMS) show that abnormally low levels
of the hormone cortisol may have a connection with FMS. At various
medical research centers around the country, scientists have found that
people whose bodies don’t make enough cortisol experience similar symptoms
to FMS, so they are studying how to regulate the function of the adrenal
gland (which produces cortisol) in fibromyalgia patients. Other research
centers are concentrating how the brain might be involved and are focusing
on how magnetic resonance imaging (MRI) and magnetic resonance spectroscopy
(MRS) which have been proven effective in evaluating muscle disorders,
can be used as diagnostic tools.
In 1990, the American College of Rheumatology established some diagnostic
guidelines to help narrow the process. The ACR stated that
FMS can be diagnosed with clinical precision in patients with “widespread
musculo-skeletal pain and multiple tender points.” The organization
defined pain as being widespread if there is pain in both sides of the
body and above and below the waist, and pain must be present in 11 out
of 18 specific areas of the spine and chest (see diagram) for a FMS diagnosis.
The pain -- not just tenderness -- has to occur when palpated (touched
with some pressure) at those points. The history of pain must also
have been present for at least three months.
It should be pointed out that not all doctors agree with these guidelines
-- some think they are too rigid and others think a patient can still have
FMS if she doesn’t meet the required number of pain points.
How is Fibromyalgia treated?
One of the major complaints of FMS sufferers is that they cannot find
doctors who are willing to “keep after it” until the problem is finally
diagnosed and a treatment regimen is proposed and underway. Many
say their doctors “throw in the towel” and just say there is nothing more
that can be done to end the pain or solve the problem...sorry. (This
kind of scenario has actually appeared in two distinguished medical journals
: Arthritis & Rheumatism and Journal of Rheumatology.) The American
Fibromyalgia Syndrome Association, Inc. is in the forefront in helping
to erase this outdated attitude through research and educational programs.
The treatment for FMS begins with education...period. In a situation
where there is no known cure and the symptoms are so many and varied that
can mimic other illnesses; where there is no “hard evidence” to document
the pain or its cause; and where chronic fatigue can exacerbate the other
symptoms the more you know about how your body works the better equipped
you will be to make informed and rational decisions about your treatment
options. There are many excellent resources available on the Internet,
through a variety of dedicated research and support organizations, and
the local library will also provide access to current information.
This quest for knowledge is up to you.
Also critical to the treatment process is developing a strong, direct
relationship with your doctor or doctors. Since it is generally accepted
that the condition is life-long, you simply must be able to talk candidly
about what’s bothering you, and you have to develop a bond of mutual trust
during treatment. If you don’t have this kind of relationship, search
until you find it. Ask your health care providers if they have any
experience in treating FMS and related conditions, and ask about their
approach to treating it. For additional information about selecting
a doctor, contact the Fibromyalgia Alliance of America (614-457-4222).
As with most chronic diseases, the extent to which a person with FMS
will “give in” to the pain or symptoms, depends to a large part on her
confidence in her medical team, the support and encouragement she derives
from friends, family and loved ones, and her ability to maintain a sense
of humor, stamina and determination to keep going. Many FMS patients
will also need treatment for depression or anxiety, and there are medications
effective in doing this. It is important to point out, however, that
since FMS is not a psychogenic pain problem, treating these or other psychological
problems will not result in a cure for fibromyalgia.
There is not just one treatment plan for FMS patients, and while there
some steps that help reduce the symptoms, each case must be treated individually.
Fortunately, the combination of lifestyle changes, exercise and sometimes
medications can be effective in relieving symptoms. Many FMS treatment
programs include:
ADEQUATE SLEEP -- In just about any circumstance, chronic fatigue
can color everything you do, so identifying the cause for the sleep disturbance
and treating is a first step. There are some sleep inducing medications
that should be avoided, however, because they have an effect on the quality
of deep sleep. The important thing is to set a pattern for regular
sleep hours and try to stick to it.
REDUCE STRESS -- Research indicates that stress can make FMS
symptoms worse. There are some very effective methods to manage stress,
but the foundation for getting it under control comes from within.
You have to make the decision that you will control your life...and that
means learning that “NO” is an answer. Allowing others to put the
“shoulds” on you simply piles on undeserved feelings of guilt that can
lead to more stress. Determine your own priorities whenever possible;
there are lots of ways to say no gently. Treasure your “down” time
and guard the activities that renew you. Investigate taking a course
in biofeedback or participate in a support group that might help you simplify
your life.
GET REGULAR EXERCISE -- Many FMS patients complain that they
already hurt, how could they possibly get more exercise. Ongoing
research suggests that even though it might be painful at first, the overall
benefits of a regular exercise regimen -- low impact aerobic exercise like
walking, swimming or bike riding -- make it all worth it in the long run.
Set a schedule of three or four sessions of about 20 minutes exercise each
week. If you miss a few days, don’t try to make it up in one longer
session; just resume your regular program.
MEDICATIONS -- Moderate use --under your doctor’s supervision
-- of over-the-counter analgesics might help minimize the pain and stiffness.
As appropriate, your doctor may also prescribe specific medication to relieve
depression or to help you sleep. Do not, however, take any medications
or remedies without your doctor’s knowledge. There are drug combinations
that might be contraindicated or even dangerous, and FMS patients don’t
need anything to make their symptoms worse.
It will take determination and commitment on the part of both the FMS
patient and her doctors to minimize the pain and symptoms. The pain
is not going to go away overnight -- the treatment program will have to
be given time to work, and it may have to be modified or expanded.
Unfortunately, there is no magic wand to make all the symptoms and discomfort
go away; this is, after all, a condition that can last a lifetime.
Hopefully, the right treatment combination will be found to make living
with FMS bearable. One of the strongest weapons in this war chest
is the patient’s attitude, however hard it may be to laugh in the face
of adversity...so give it a try. Cherish pleasure and jealously guard
the things that make you happy. Visualize a good quality of life
and do the things necessary to achieve it; jettison the things that simply
add stress without long term gain.
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