Confronting Fibromyalgia

By Karta Purkh Singh Khalsa

What does it feel like to live with fibromyalgia? "Imagine last night
you drank more wine than you should have but had no water or food.
You went to bed late and got up early, feeling stiff, achy, and
tired," says Chanchal Cabrera, a British herbalist, fibromyalgia
patient, and author of Fibromyalgia: A Journey Toward Healing (McGraw-
Hill, 2002). People with fibromyalgia feel that way all the time, she
says.

A truly mysterious ailment, fibromyalgia syndrome (FMS) involves
chronic widespread muscle pain and fatigue. It affects about 2
percent of all Americans and accounts for 10 to 30 percent of all
rheumatology consultations. FMS mainly afflicts people between the
ages of 35 and 55 and occurs seven to 10 times more frequently in
women.

And as if the pain and fatigue weren't enough, a constellation of
other symptoms often accompanies the disorder-foggy thinking, sleep
disturbances, painful menstrual cramps (dysmenorrhea), and irritable
bowel symptoms-making a clear diagnosis difficult. Although the cause
of FMS continues to elude researchers, certain stresses on the body,
such as intense exercise, illness, or a traumatic event, appear to
intensify symptoms or even bring on the condition itself.

"My fibromyalgia was triggered by a car accident in 1991, when I was
a healthy and fit 28-year-old," says Cabrera, now 43 and living in
Vancouver, British Columbia. "Within minutes of the impact, my neck
and shoulders were in pain, and I had a dull headache. My slow
descent into fibromyalgia had begun."

The body blows a fuse
Jacob Teitelbaum, MD, medical director of Maryland's Annapolis Center
for Effective Chronic Fatigue Syndrome/Fibromyalgia Therapies, likens
FMS to the body's "blowing a fuse" when its energy account becomes
overdrawn. This short circuit results in hypothalamus suppression,
Teitelbaum maintains. "The hypothalamus controls sleep, hormonal
function, temperature, and autonomic functions such as blood pressure
and blood flow," he says. "The hypothalamus uses more energy for its
size than any other organ, so when there is an energy shortfall, it
goes offline first."

"FMS has no single cause," Teitelbaum says. He surmises that the
hypothalamus decreases its protective function in the face of what it
perceives as overwhelming stress, which can stem from infection,
injury, or a stressful, emotional incident. "FMS patients seem to
have genetic differences in the way their hypothalamus, pituitary,
and adrenal regulation handle stress," he says. "As a result, the
muscles end up short of energy and in pain."

Is there hope?
Mary Shomon, now an author and patient advocate in Washington, DC,
began to have symptoms of FMS at age 34, after two car accidents and
numerous other health challenges. Through a holistic approach and
alternative therapies, she finally found relief from her symptoms.
However, 11 years later she still expresses dismay about the stigma
and disbelief she encounters about fibromyalgia-particularly from the
conventional medical community.

"Those of us who have suffered through it know firsthand that it is a
very real condition," Shomon says. "We didn't dream it up or develop
some psychosomatic syndrome, and we can't just think it away, buck
up, and feel better, or just `get over it' by sheer determination.
Some doctors-and even some of our families and friends-think that
fibromyalgia is psychosomatic, evidence of laziness, or is due to
some inherent emotional or character weakness."

Conventional medicine has little to offer in the way of treatment,
which frustrates patients and doctors alike. Mainstream physicians
see FMS largely as an incurable condition (if they see it as a
condition at all), so they focus on relieving pain and improving
sleep-primarily with pharmaceuticals. Although both conventional and
alternative healthcare providers may suggest exercise programs to
improve muscle and cardiovascular fitness, along with relaxation
techniques to ease muscle tension and anxiety, drugs remain at the
forefront of conventional medicine's arsenal.

Conventional practitioners often recommend nonsteroidal anti-
inflammatory drugs (NSAIDs) like aspirin or ibuprofen for pain, and
tricyclic antidepressants to improve sleep and mood. These drugs
improve the symptoms to a certain extent but do not halt the disease.
And they come with a hefty price: NSAIDs cause bleeding in the
stomach lining and may affect kidney and liver function, particularly
when taken long-term. Antidepressants carry a host of potential side
effects, including anxiety, nausea, weight gain, and constipation.
And, at the end of the day, they don't alleviate the disease or
provide any hope for long-term relief. In contrast, a new breed of
alternative practitioners, including Teitelbaum, thinks that FMS can
be cured. They aim to get at the core issues and turn the disease
around with alternative therapies.

The search for sleep
Sleep is a primary concern for anyone with FMS. Ninety percent of
patients awaken multiple times a night, and even if they make it
through the night, they rarely sleep deeply enough to feel
rejuvenated. Other symptoms may disrupt sleep as well, such as
restless legs syndrome (twitchy, cramping legs that cause pain and
sleeplessness), irritable bladder, and nocturnal myoclonus (jerky
muscles).

Scientists have long known that fibromyalgia involves "disregulated
sleep physiology," or alpha rhythm disturbances occurring during the
night and resulting in light, unrefreshing sleep. "If you don't get
eight to nine hours sleep at night, your pain will simply not go
away," says Teitelbaum. "Deep sleep is when you make growth hormones,
recharge your batteries, and get rid of pain," he explains.
Teitelbaum's first line of defense against disturbed sleep is L-
theanine (it must be the "L" form). He advises 200 mg at bedtime.

"L-theanine is fantastic," Shomon says. "With L-theanine, I can sleep
without waking up groggy." Teitelbaum also recommends low-dose
melatonin-a maximum of 0.5 mg per night-to encourage a normal sleep
cycle. Because sleep is so critical to healing, Teitelbaum may
occasionally prescribe sleeping pills, but only as a last resort.

For Cabrera, sleeping and healing went hand-in-hand: "Melatonin
really helped give me a deep, long sleep." After her diagnosis,
Cabrera had to quit work and pretty much rested and slept for a
year. "I slept 12 to 14 hours per night, plus naps," she says. "I
still use melatonin every night, but now I take a small dose of 0.3
mg." Cabrera has to watch herself closely, however. "With less than
ideal sleep even for one night, some FMS symptoms will return, but I
now can reverse them right away," she says.

A new sugar for energy
But no matter how much they rest, people with FMS never seem to have
enough energy. That's not surprising, since research shows FMS
sufferers have lower levels of ATP (the body's cellular energy
molecule) along with a lowered ability to make it. But exciting new
research with FMS patients shows that supplementing with D-ribose
(often just called ribose), the body's cellular fuel, can help the
body replenish ATP.

A natural sugar, ribose occurs in all living cells. "Ribose is the
key building block for making energy," says Teitelbaum. "In fact, the
main energy molecules in your body are made of ribose, plus B
vitamins and phosphate." Our bodies acquire ribose through diet-
brewer's yeast has a rich supply-and the body also makes it from
glucose in food. This is a slow process, however, that cannot always
keep up with the energy lost in daily activities, so it may take
several days to restore the lost ATP-and possibly much longer for
those who suffer with FMS.

Scientists know that supplemental ribose can reduce muscle pain,
stiffness, and exercise fatigue; that people tolerate it well; and
that it has no side effects. Armed with this knowledge, Teitelbaum
conducted a recent and very promising ribose study in FMS patients.
They took 5 grams of ribose three times a day, for an average of 28
days. In just 12 days, 66 percent of those taking ribose had
significant improvement in energy, sleep, mental clarity, and pain
intensity, with a 44 percent average increase in energy and an
overall 30 percent increase in well-being. Although the study is
preliminary, with results this positive, look for additional research
on ribose soon.

A different kind of cocktail
Could a simple injection cure FMS? As it turns out, one nutrient
concoction just might. The Myers Cocktail (named for John Myers, the
physician who invented it), an intravenous micronutrient treatment
containing magnesium, calcium, vitamin B complex, and vitamin C, has
been used to treat fibromyalgia for 20 years. Like ribose, these safe
nutrients promote cellular energy production and pump up ATP
production, according to a study published in Alternative Medicine
Review. "We have good clinical success with this treatment to reduce
pain and promote detoxification," says Virginia Hadley, RN,
nutritionist at the Tahoma Clinic in Kent, Washington.

Yale researchers recently tested the Myers Cocktail on a group of 40
patients ages 18 to 75 in a double-blind, placebo-controlled,
randomized trial. They gave one injection a week for eight weeks
through a large syringe containing 37 ml (about 7 teaspoons) of
nutrient solution. The mixture was injected slowly over about 20
minutes. The yet-to-be-published study measured tender points,
depression levels, and quality of life. "This three-month pilot study
showed significant improvements in all pertinent outcome measures
with the Myers Cocktail and none with the placebo solution," reports
David L. Katz, MD, associate clinical professor of epidemiology and
public health at Yale University. The study participants still had
less pain a month after the last injection. "Our results strongly
suggest that Myers Cocktail may well offer therapeutic benefit in
fibromyalgia. In the interim, we will continue to offer it to our
patients," says Katz.

Take a little needling
Many people with FMS get hooked on acupuncture, and for good reason.
Numerous studies show the positive benefits of acupuncture for pain
relief. One landmark study appeared in the June 2006 Mayo Clinic
Proceedings. This randomized, controlled trial, led by David P.
Martin, MD, an anesthesiologist from the Mayo Clinic College of
Medicine in Rochester, Minnesota, reports on 50 FMS patients, half of
whom received acupuncture; the remaining 25 received sham
acupuncture, which involved needles inserted at non-therapeutic
points. After just six treatments spread over three weeks, the
acupuncture patients reported significant improvement in symptoms,
particularly fatigue and anxiety, lasting up to seven months. One
month after treatment, those treated with "true" acupuncture had less
fatigue and fewer anxiety symptoms than the sham acupuncture group.

Exercise more, stress less
A regular, gentle, exercise routine stands out as indispensable for
FMS-to increase flexibility and reduce pain and stress. The severe
pain that usually accompanies FMS makes it difficult for many
sufferers to begin and maintain an exercise program. That's why
programs with gentle stretches and movements, such as therapeutic
yoga, Pilates, and t'ai chi, are often a good fit for FMS patients.

Shomon finds tremendous relief with Pilates. "My body was often a
knot of aches and pains-especially in my neck, shoulders, and lower
back," she says. "But I started Pilates for two one-hour sessions a
week. It was life-changing. Gradually, I gained strength, my constant
body pain faded, and I was able stop my daily doses of ibuprofen."
Shomon has been doing Pilates for about four years and says she
rarely has body pain.

Yoga also eases muscle pain and stiffness. In a six-week randomized
pilot study, researchers looked at a yoga program modified for FMS
chronic back pain. The program improved balance and flexibility and
diminished disability and depression.

Electrical help
Then there's some shocking news. According to Carolyn McMakin, a
chiropractor in Portland, Oregon, and an active proponent of
microcurrent therapy, electricity can help zap FMS. Microcurrent
therapy increases the rate of healing for injuries and fractures and
controls muscle pain. According to McMakin, delivering microamperage
(50 to 100 microA) electrical current to a patient increases ATP
concentrations up to fivefold in the body.

Electricity can relieve pain in other ways, too. Transcutaneous
electrical nerve stimulation (TENS), which first appeared in
scientific literature around 1975, relieves pain by sending low-
voltage electrical signals to nerves with a battery-powered device.
TENS, used mainly by physical therapists but also by some MD pain
specialists, is thought to work because the electricity stimulates
the nerves in an affected area and scrambles normal pain signals. It
also may help the body produce natural endorphins. One 2005 study
looked at 218 chronic pain patients. After receiving TENS twice a
week for six weeks, the patients had substantial improvement in
disability and pain, which they maintained at a six-month follow-up
exam.

While everyone hopes for a cure for FMS, that magic bullet that puts
an end to the disease, all these different therapies and a number of
lifestyle adjustments make the disease manageable. "People must
change their lifestyles to make any progress," Cabrera
says. "Fibromyalgia involves a host of factors and an internal
complex of concerns. Even though I am an herbalist, and I know herbs
help, the entire answer doesn't lie in substances."

And Shomon adds, "There's clearly no conventional medical cure or
just one surefire treatment. What seems to work the best is a
combination of customized tactics that focuses on ensuring quality
sleep, reducing pain, increasing flexibility, improving metabolism,
and reducing stress."

Do You Have It?
Although an official diagnosis of fibromyalgia involves identifying
pain and tender-point sites (see illustrations on pages 68 and 69),
below are the most common symptoms associated with this disorder.

Signs and Symptoms ....................................Percentage of
Patients
* Widespread pain............................................90 to 100
* Tender points.................................................90 to
100
*
Fatigue...........................................................90
to 100
* Cognitive impairment ("fibro-fog").......................70 to 90
* Sleep disturbances..........................................70 to 90
* Dysmenorrhea (painful menstruation)...............70 to 90
* Irritable bowel symptoms............................... 50 to 70