By David MacFarlane, Well Journal, December 2002
The cruel irony for frightened fibromyalgia patients is that they are told the results of all their medical tests are "normal".
Their physical pain, fatigue and depression are very real. But there is nothing for a physician to see in a laboratory report — no tell-tale spot on an X-ray, no elevated count in a blood workup.
Thus begins the frantic and frustrating search for relief for the 3 million to 5 million Americans suffering from this well documented but mysterious medical condition.
Fibromyalgia (FM), which literally means "painful tissues," presents itself with tenderness and pain in numerous locations around the body — the neck, shoulders, lower back, beneath the buttocks, knees and elbows — known as myofascial trigger points. Almost inevitably, these first symptoms are followed by an onslaught of multiple, dove-tailing conditions such as chronic fatigue syndrome (CFS), irritable bowel, migraine headaches, depression and others — that conspire against the patient with devastating consequences, sweeping away any semblance of normal life and ushering in an existence of physical pain and infirmity.
With little that doctors can do apart from treating the pain and depression, frustrated patients often embark on a personal healing odyssey in search of understanding, validation, relief from the ever-present pain and, ultimately, a cure.
However, even as medical researchers appear to be finding clues to FM's mysteries, it probably is misguided to think that a pill or a shot someday may cure FM, say experts. On the contrary, they say, emphasis should be placed on what the patient can do (with sympathetic physician guidance) to manage the pain and heal herself. "It is critical to treat the mind-body-spirit connection," says Dr. Jacob Teitelbaum, who has studied FM for over 20 years.
In 1997, Donna, a 49-year-old from Norcross, GA, paid a visit to her allergist complaining of a severe reaction to a man's cologne. "I went for shots and a breathing treatment, expecting to be better the next day," she remembers.
She did not get better. Instead, she became rapidly and progressively worse. "Within two weeks, I could not walk unaided, could not even hold my head up, could not follow a conversation, could not know what was going on around me," she says.
Eventually she became housebound and, to this day, her mobility dependents on a wheelchair. "I do not seem to be improving," she adds.
What happened? Theories abound, but the short answer is no one knows precisely what causes FM. It is generally accepted that the pain associated with FM is the result of abnormalities in sensory processing in the brain and spinal cord. Researchers have suggested everything from a series of defective genes that cause phosphates to build up in the body to chronic viral and bacterial infections to sexual abuse. Still, no conclusive cause-and-effect relationship has ever been established.
Scientists do know this: 80% of FM patients are white women between the ages of 30-50. They are educated and middle class. Probably, many FM sufferers are genetically predisposed to their illnesses.
FM often begins with a traumatic event, such as a car accident or a serious, though not life-threatening, illness. It can also be spurred by psychological forces, such as the loss of a loved one, by low hormone levels or by chemical exposure.
And stress. Build a profile of a typical FM patient and you'll find stress in spades. "Fibromyalgia is often simply an extreme extension of the stress of modern life," says Dr. Jacob Teitelbaum, who has treated thousands of FM patients in his Maryland practice.
"It's the body's own protective mechanisms kicking in," says Dr. Teitelbaum. "Your body is telling you something by shutting down."
"These symptoms are not the enemy," he advises. Think of them as a warning sign from a self in extreme distress. "Our feelings keep us in touch with our integrity," says Dr. Teitelbaum.
If stress can contribute to the manufacture of real, physical symptoms, then it stands to reason that healing can begin once the source of that stress is eliminated, say a growing number of doctors. Unearthing the source of fibromyalgia, and finding relief, then, rests with a patient's ability to connect physical, mental and spiritual harmony with good health, and discord with sickness.
The nearly universal advice to those suffering from fibromyalgia is to relax, develop coping skills, eat better, take supplements and get in shape. But that is far easier said than done, when the patient is battling pain and depression — aggravated further by absence of a clear course of treatment.
So, how do you begin to unwind the coils of a condition that seems bent on constricting the life out of you? Patiently, say experts, through awareness, exercise, nutrition and stress reduction.
A Four-Step Healing Plan
Step 1: Know thy enemy
"This is half the battle," says Mark J. Pellegrino, M.D., a leading specialist in fibromyalgia. "People with fibromyalgia must understand that this condition is not life threatening, deforming or paralyzing, and it is a valid medical condition. The more one learns about fibromyalgia, the more it is understood and the less frightening it becomes."
If understanding the processes of fibromyalgia is the first step to managing it, then developing a belief system rooted in healing is the first step to overcoming it, say Doctors William B. Salt II and Edwin H. Season. In their book Fibromyaligia and the MindBodySpirit Connection (Parkview Publishing, 2000) the message is clear: Patient, heal thyself. "We feel that everyone — people, patients and doctors — tend to underestimate our individual power to heal," says Dr. Salt in a recent WebMD chat session.
What's more, he says, patients need to understand the distinction between healing and treatment. "Treatment is the application of something external, or something given to the patient, often by a doctor but even a natural substance like an herbal preparation," says Dr. Salt. "But healing, by contrast, comes from within."
For many, a belief system founded on healing is a new concept that will take time and patience to assemble. But, the virtues of such an approach are scientifically established. We know that "neuropeptides can be turned on and off through thought, belief, relaxation, exercise, diet, sleep, and medication," says Dr. Salt. "And so in an effort to heal patients with fibromyalgia, improved health habits that involve exercise, proper diet, good sleep, and medication, specifically anti-depressants, can be beneficial."
Step 2: Exercise
For many fibromyalgia patients, merely rising up from a chair is an act of will on a grand scale. Discouraged and deconditioned by inactivity, chronically fatigued and ever cautious not to set off yet another flare-up of pain, many FM patients cannot even imagine beginning an exercise regimen. However, say doctors, the alternative is most likely an ever-diminishing quality of life, decreased mobility and more pain. "A gentle program of stretching and aerobic exercise is essential," says Robert Bennett, M.D., director of the Oregon Fibromyalgia Group.
At myalgia.com, the group's website, he suggests the following:
Start by warming the muscles either with a heating pad or gentle stretching. By stretching up to the point of resistance, you can relieve the tension and pain that causes those trigger-point flare-ups. Sustain the stretch for 10 to 15 seconds, then relax for the same amount of time. Eventually, work your way up to holding the stretch position for 60 seconds.
Choose a non-impact loading exercise, such as walking, hydro-therapy or a stationary bicycle. The eventual goal, he says, is to exercise 3-4 times a week for 20-30 minutes at 60%-70% of maximal heart rate.
"I have found that an acceptable initiation for most patients is to start with two or three daily exercise sessions of only 3-5 minutes each. The duration should then be increased until they are doing three 10-minute sessions, then two 15-minute sessions and finally one 20- to 30-minute session performed 3 times per week," says Dr. Bennett.
Susan was diagnosed with FM in 1996. Like many FM patients, the condition worsened to such a point that she eventually was forced to quit her job as a nurse. Though she deals with the pain of FM on a daily basis, she continues to look for answers that work for her. Exercise is one that does work, she says.
"I walk three miles a day in my bedroom to [an exercise] video, and within a fairly short time, usually 10 to 15 minutes, the pain begins to lighten up," she says. Although the relief is only temporary, usually for only an hour or so, it has allowed her to cut back on her pain medications.
Yoga, tai chi and other forms of exercise that require mindfulness, attention to breathing, development of flexibility, balance and inner resources, also have shown promise.
Apart from the aerobic benefits, says Dr. Season, exercise results in two other very important benefits, stress reduction and better sleep. "Exercise will encourage deeper sleep, more Stage 4... which is the sleep that is deficient in fibromyalgia."
And if exercise alone doesn't restore the body's vital sleep center, says Dr. Teitelbaum, supplement your efforts with natural remedies such as valerian root, hops, passion flower, wild lettuce, Jamaican dogwood and thiamine, which have been shown effective in various combinations. Caution: Individuals should consult with their health care practitioners before taking any supplements.
Step 3: Quieting the querulous mind
Mention psychotherapy to an FM patient who for years has been told that her problems are all in her head and you've got a very defensive person on your hands. It's understandable, says Oregon psychiatrist Carol Burkhardt. But the goal of cognitive therapy is not to prove that the FM patient's symptoms were imagined into being, but rather to help her examine the relationship between thoughts, beliefs, emotions and behavior. "Cognitive strategies help patients recognize thought patterns that are maladaptive" and teaches them "specific techniques for decreasing distress, pain, fatigue, and anxiety," says Dr. Burkhardt.
Mini relaxation exercises — 30-second sessions that can be done anywhere, anytime — can help to quiet the internal chatter and relax tense muscles. Start by raising your shoulders and taking a deep breath. As you exhale, relax your muscles beginning at the top of your head. Release the tension on down through your shoulders, arms, torso.
Where fibromyalgia goes, depression often follows. "I prescribe different medicines in the tricyclic antidepressant family and selective serotonin re-uptake inhibitor family," says Dr. Pellegrino, who himself suffers from FM.
Step 4: Nutrition and supplements
Are processed foods and nutrition-blighted diets the cause of fibromyaglia? At least partially, say experts. The average American adds 150 pounds of sugar to her diet every year, says Dr. Teitelbaum. Indigestion, bowel and yeast infections, bloating and diarrhea — all common symptoms of fibromyalgia — may be traced to poor nutrition and a lack of enzymes that once were naturally present in foods, he says.
"First and foremost, avoid the excess sugar that is found in our diet," he says. "It aggravates yeast growth and the immune system."
"Next, I recommend that most people take plant-based digestive enzymes with their meals — especially if they have symptoms of indigestion," says Dr. Teitelbaum. "The same enzymes that cause a food to ripen assist in the food's digestion. Decades ago, food processors realized that by destroying the enzymes in the food, they could extend the shelf life from days to decades."
"There is no single diet that is best for every human being, and this applies to fibromyalgia as well," says Dr. Teitelbaum. However, he says, his own patients have responded with remarkable swiftness to a few notable changes to their diet, and the addition of some key supplements.
"The most common, and I think important, deficiency in fibromyalgia, and most Americans, is that of magnesium," says Dr. Teitelbaum. Magnesium affects over 300 enzyme systems in the body, says Dr. Teitelbaum. "Unfortunately, most magnesium in the diet has been processed out. "
He notes for comparison sake that "the average Chinese diet supplies 650 mg of magnesium a day while the highly-processed American diet supplies only about 275 mg a day." To compensate for an underachieving diet, he suggests 200 mg of magnesium glycinate everyday, noting with caution that "less than this may not be adequate and more will often cause diarrhea."
A word about glycine: "The glycinate form is important, as most other forms, especially the oxides and hydroxides which are most commonly found on the store shelves, are poorly absorbed," he notes. "In addition, the glycine helps your body make a critical antioxidant called glutathione."
Restoring key building-block nutrients and antioxidants is an important step in regaining proper thyroid, adrenal, immune and mental function. In addition to magnesium, Dr. Teitelbaum recommends the following daily supplements:
- B-complex vitamins (50 mg). Vitamin B12 is especially important — Dr. Teitelbaum recommends 500 mcg. of B12
- Vitamin C (500 - 750 mg)
- Vitamin E (100 units/day)
- Selenium (150 - 200 mcg)
- Glycine, cysteine and glutamine — amino acids needed to make the key antioxidant glutathione
- Zinc (15 mg) for immune function and wound healing
- Iodine (150 to 200 mcg/day) for thyroid function
- Tryptophan and tyrosine, amino acids that are necessary for production of the neurotransmitters serotonin, dopamine, and norepinephrine (adrenaline) which generally are low in fibromyalgia patients.
Dr. Teitelbaum has developed a powdered supplement containing, what he believes, are optimum levels of these and other key nutrients. It's called Daily Energy Enfusion, and it can be purchased at his web site, www.endfatigue.com (he donates all of his royalties from the product to charity).
Last, says Dr. Teitelbaum, you should eat food that makes you feel good — with the caveat that you should avoid as much processing as is reasonably convenient. "That which makes you feel good is likely to be healthy for you. So, I simply invite people to eat what they want to eat, see how it makes them feel, and continue those foods that make them feel good."
For fibromyalgia sufferers, the journey to wellness is taken one mindful step at a time. While western medicine can lend valuable support, solving this syndrome remains a uniquely personal trial. There is likely no cure for fibromylgia coming anytime soon; however, there remains as always the very real possibility of healing.