Jeanie Lerche Davis
Laura J. Martin, MD
Jackie Yencha hit the wall at age 22. "I couldn't handle the pain any more,"
she says. "I was terribly fatigued, not feeling well, not sleeping well." But
it took Yencha seven years to get an accurate diagnosis of fibromyalgia.
Her first diagnosis -- reflex sympathetic dystrophy -- resulted in
experimental surgery that did nothing to relieve her pain. In fact, numerous
surgeries followed to correct the problems from that procedure. Years went by.
Yencha was still in pain, still getting little sleep.
"I became desperate ... the pain never got better," Yencha tells WebMD.
That's when she headed to the Cleveland Clinic, where comprehensive testing
showed she had fibromyalgia.
"You need to find a doctor who will listen and who really knows
fibromyalgia," says Yencha.
"A lot of doctors out there don't know much about it," she explains. "We
hear from people all the time ... people in small towns who say no one here has
ever heard of this."
Fibromyalgia is a chronic condition that causes disabling pain all over the
body -- as well as stiffness and tenderness in muscles, tendons, and joints,
experts say. It is most common among women ages 35 to 55.
Although it's one of the most common muscle problems, the cause is a
mystery, fibromyalgia researchers say. There is no inflammation or joint
damage, as occurs with arthritis. There is no damage to internal body organs,
as with rheumatoid conditions like lupus. It is called fibromyalgia syndrome
because it is identified by a collection of symptoms.
Indeed, the list of possible fibromyalgia symptoms is a long one:
But these are also common to liver disease, lupus, Lyme disease, thyroid
dysfunction, heart disease, arthritis, degenerative joint disease, chronic
fatigue syndrome, irritable bowel syndrome, and other disorders -- and therein
lies the difficulty in diagnosing fibromyalgia.
How fibromyalgia develops is also a mystery. "The onset can be fairly
abrupt, triggered by a motor vehicle accident or a mishap at work," says Steven
Berney, MD, chief of rheumatology at Temple University Health System in
Philadelphia. "Very quickly the condition sets in. You feel bruised for the
next couple of days, but there's the expectation that whatever is disrupted
will heal. When the pain doesn't wear off, it becomes clear something else is
More typically, there is a gradual onset, Berney tells WebMD. "The pain
becomes more severe over time. That's more difficult to diagnose. You're
looking for something that set this off, and you can't find it."
Fibromyalgia research shows that the disorder seems to run in families.
Recent studies show that genetic factors may predispose some people to
fibromyalgia. An illness or injury that causes trauma to the body can make
subtle fibromyalgia symptoms more apparent -- and more troublesome, according
to the National Fibromyalgia Association.
"The pain is very real and markedly impedes their lives," Berney says.
"People who were very active become disabled by pain and fatigue. 'I want my
life back' becomes the charge."
While it's not clear what exactly triggers fibromyalgia, researchers are
homing in on the basic mechanisms.
Fibromyalgia is considered a disorder of pain regulation. Patients have
higher levels of two substances -- a nerve chemical called substance P, and
nerve growth factor in the spinal fluid. They also have lower than
normal levels of the brain chemical serotonin, as is also true with people
suffering from depression and anxiety.
All this produces a dysfunction in the body's ability to process pain -- and
creates supersensitive nerves throughout the body, explains Andrew J. Holman,
MD, a rheumatology specialist at the University of Washington in Seattle. To
make things worse, people with fibromyalgia have difficulty getting a good
night's sleep -- so they constantly wake up feeling fatigued.
The result: Everyday sensations of discomfort and pain are amplified beyond
the norm. Slight bumps and touches can cause disabling pain if you have
fibromyalgia. This pain can be aggravated by outside factors -- noise, weather
changes, and stress.
To figure out what's going on, doctors diagnose fibromyalgia by examining
specific "tender points" on the body. "There are 18 specific tender points --
specific locations that are tender for everyone," Holman tells WebMD. "But for
people with fibromyalgia, these points are significantly more tender. People
are more sensitive at those points. A dysfunction in the central pain
processing amplifies their sensations."
Tenderness or pain in at least 11 of these 18 points is the hallmark of
fibromyalgia, says Holman. Also, the pain is widespread on both sides of the
body -- neck, buttocks, shoulders, arms, upper back, and chest. Tender points
are around the elbows, shoulders, knees, hips, back of the head, and the breast
Doctors test these tender points to make the fibromyalgia diagnosis. Yet
it's not always so clear-cut what the widespread pain indicates. It takes a
careful ear to discern what's really going on, explains Martin Grabois, MD,
chairman of physical medicine and rehabilitation at Baylor College of Medicine
"Physicians are used to diagnoses like a herniated disc, where there's pain
in a specific location," Grabois tells WebMD. "That's not so with fibromyalgia.
Some pain is above the waist, some below the waist, at the shoulders, etc., and
there are sleep disturbances, fatigue. These are symptoms of a number of
diseases. They are not isolated to fibromyalgia."
The muscle pain can range from mild discomfort to severe enough that it
limits a person's everyday life -- including work and social activities. The
pain is often described as burning, gnawing, throbbing, stabbing, or aching.
When the person relaxes, the pain may be more noticeable -- and less so when
The sleep problems associated with fibromyalgia -- insomnia and fragmented
sleep -- may be the root of the pain, says Holman. It deprives people of stage
IV deep sleep, the non-rapid-eye-movement sleep that helps us feel refreshed in
Fibromyalgia research is showing that an automatic arousal is triggered in
the brain during sleep, Holman tells WebMD. "The basic fight or flight response
is activated at night while you're sleeping. The hormones epinephrine and
adrenaline are released as the body becomes vigilant, aware. That causes the
transition from deep restorative sleep into light sleep."
These disruptions rob the person of restorative processes that occur during
deep sleep, he explains. "It's during deep sleep that most growth hormone is
produced. Muscles regenerate and heal, and neurotransmitters are replenished in
the brain. The body's ability to recuperate from the day's stresses --
including small pain sensations -- is believed to occur during deep sleep."
The brain has a "pain threshold," Holman adds. "During the day, low signals
in the brain can be ignored and you continue doing what you're doing. But if
the system is overwhelmed, at night the normally nonpainful stimuli become
painful. Lack of deep sleep amplifies all sensations -- what we call central
"When people finally get deep restorative sleep, fibromyalgia improves
substantially," Holman says. "But the best strategy to treat the sleep is not a
sleeping pill. The strategy is to turn off the arousal in the brain stem that's
interrupting the sleep. We want to allow people to sleep."
As with chronic pain, sleep problems are common -- and it's not always easy
diagnosing fibromyalgia syndrome as the problem.
"The primary care doctor is at somewhat a disadvantage," Berney tells WebMD.
"There are no specific tests for fibromyalgia diagnosis. To make a diagnosis,
one has to make sure it's not something else -- lupus, thyroid dysfunction,
rheumatoid arthritis. The list of possible diseases associated with these
symptoms is fairly extensive. It's the vagueness of the symptoms that delays
"You won't necessarily have all of the symptoms of these disorders, but you
can have a component of each," says Grabois. "Patients often go to a lot of
doctors trying to figure out what's wrong. The doctors are not familiar with
fibromyalgia syndrome so they don't necessarily know the diagnostic criteria
for it -- and they don't necessarily check for it."
Also, the level of misery is different for each patient, he points out.
"Some have pain worse than others." For some, the pain is continuous. For
others, it comes and goes. Some people wake up feeling like they have been
exercising all night.
If you have seen several doctors -- yet still don't have relief -- see a
specialist, Grabois advises. The National Fibromyalgia Association provides a
list of specialists who understand the disease -- experts in pain management,
rheumatology, and neurology.
Prepare for your appointment. Before meeting with the doctor, prepare
to accurately communicate your symptoms. Think about these:
Keep a pain journal. "Doctors will listen more if you keep a daily
record of how you feel -- even if it's just for one month or for three months,"
says Yencha. In your pain journal, make note of intensity of pain (on a scale
of 1 to 10), what you were doing at the time, and how you felt emotionally. It
will help you and your doctor see patterns in the pain, she says.
There are no lab tests or scans that can help doctors diagnose fibromyalgia.
But various blood tests can help them rule out other medical conditions. Some
patients need to have respiratory problems checked or get a sleep apnea study,
Berney says. "On occasion, the problem is sleep apnea or snoring, both of which
Find the right doctor. It's important to find a doctor who cares
about you -- and wants to help you, says Mary Rose, PsyD, clinical psychologist
and behavioral sleep specialist at Baylor College of Medicine in Houston. "It's
very common, physicians having very little time. Sometimes they don't really
hear everything a patient says."
Never stay with a physician you don't like or trust, Rose tells WebMD. "It's
not all in your head -- and while you may be depressed, depression is not the
whole picture of fibromyalgia. We see depression with cancer, cardiac disease,
and we know those are real. Pain is very frustrating. In the medical community,
we probably don't have the empathy for pain that we should."
Get emotional support. A therapist's support can be helpful when
you're dealing with fibromyalgia, Rose notes. "Fibromyalgia has such a stigma.
Sometimes it is really helpful to see a therapist -- not because you're crazy,
but because you have to deal with pressure and stigma. It's nice to have
someone objective to talk to."
SOURCES: Jacqueline Yencha. Steven Berney, MD, chief of rheumatology, Temple
University Health System, Philadelphia. Andrew J. Holman, MD, rheumatology
specialist, University of Washington, Seattle. Martin Grabois, MD, chair of
physical medicine and rehabilitation, Baylor College of Medicine, Houston. Mary
Rose, PsyD, clinical psychologist and behavioral sleep specialist, Baylor
College of Medicine, Houston. Medicinenet.com: "What is Fibromyalgia?" National
Fibromyalgia Foundation. WrongDiagnosis.com. National Fibromyalgia Partnership.
WebMD Medical Reference: "Understanding Fibromyalgia: The Basics" and
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