BEHAVIORAL TREATMENTS
As noted, being overweight is the main cause of OSA. Because of this, weight loss is one of the most effective ways to treat it. When you are treated for CFS/FMS, it often becomes easier to lose weight. In fact, it is not uncommon to lose twenty to thirty pounds. Markedly cutting back on your carbohydrate intake and increasing your protein intake can help as well. I often prescribe medications that help treat CFIDS/FMS and that also assist with weight loss, among them dextroamphetamine (Adderall, Dexedrine), thyroid hormone, and certain antidepressants. As we discuss later, although I think Dexedrine is overused in hyperactive children, these medications actually help restore balance in CFS/FMS and can be beneficial in this setting.
Avoid sleeping in positions that the videotape shows cause you to snore and have sleep apnea, especially lying on your back. Sleep apnea can often be decreased by taking a tennis ball, putting it into a cloth pocket, and then sewing it into the mid-back of your pajama shirt. The tennis ball makes lying on your back uncomfortable, forcing you to roll onto your side or stomach without waking you. Finally, avoid bedtime alcohol, which can aggravate sleep apnea.
PHARMACOLOGIC TREATMENTS
Several drugs have been used for OSA, but with limited success. A few patients have also been helped by supplemental oxygen. This is especially helpful if you live at a high altitude.
Drugs that contribute to weight loss (including the ones noted above), as well as antidepressants that help weight loss, such as Prozac, can also be useful. It is important, though, not to take these drugs later in the day if they interrupt sleep.
MECHANICAL TREATMENTS
There are several mechanical devices that change the shape of the upper airway and help prevent the throat from collapsing. Orthodontic devices can help keep the lower jaw and tongue forward. These are most likely to be helpful for mild cases of sleep apnea, UARS, and people who cannot tolerate the CPAP machine. Many people are not willing to continue with the CPAP treatment because of the noise of the machine, the discomfort of wearing the mask, and the cost. However, patients who are able to tolerate the CPAP for at least three to six months become adapted to the treatment. Fortunately, the newer CPAP machines have become much more user-friendly.
Another possibility is surgery to reshape the throat so it stays open during sleep. Removing the tonsils, nasal surgery, and surgically trimming back the soft palate and the uvula (the tiny thing that hangs down in the back of your throat) are the most common treatments performed. Although these surgeries can be helpful for snoring, they are less likely to help resolve sleep apnea.
It is controversial whether using more aggressive treatments for sleep apnea are worthwhile for people who have fewer than fifteen episodes of apnea per hour. The more conservative approaches (for example, weight loss and avoiding sleeping on your back) are more reasonable ways for those with mild apnea to begin treatment.
NARCOLEPSY
Narcolepsy is a sleep disorder characterized by excessive sleepiness during the day and a condition called cataplexy, a sudden temporary loss in muscle strength. It is often triggered by strong emotions, such as anger or happiness, and can last for seconds or minutes. In severe cases, the person may collapse to the floor. More commonly, the head may sag and the mouth may droop, with only a momentary feeling of weakness. During cataplexy episodes, the person is fully conscious and can see and hear but may not be able to speak. Some people with narcolepsy also have sleep paralysis, an inability to move any muscles when initially falling asleep or waking. This can be frightening, but it is not dangerous. About 70 percent of patients with narcolepsy have only daytime sleepiness, with no cataplexy or sleep paralysis. Narcolepsy is believed to affect one in every thousand people. A study done in New Zealand suggests that narcolepsy is fairly common in CFIDS/FMS.
DIAGNOSING NARCOLEPSY
A diagnosis of narcolepsy can be made with multiple sleep latency testing (MSLT) done in combination with sleep apnea testing. A person with narcolepsy often falls asleep repeatedly in less than five minutes if put in a quiet environment. If REM (dream) sleep occurs in two or more of four or five naps, a diagnosis of narcolepsy is confirmed.
TREATING NARCOLEPSY
Stimulants (specifically Dexedrine, Ritalin, or Adderall, which are amphetamines commonly used in patients with hyperactivity) can be very helpful for many people with CFIDS. The amount needed to maintain adequate alertness varies from person to person. Once the proper dose is found, it does not need to be, and should not be, raised. The maximum dose is 10 to 30 milligrams of any of these three medications taken three times a day, up to 60 milligrams a day. Most CFIDS patients with narcolepsy find 5 to 7.5 milligrams in the morning and 0 to 5 milligrams at noon to be optimal. I become more concerned about addiction if a patient needs more than 30 milligrams a day, and I rarely prescribe these higher doses.
A newer drug, modafanil (Provigil), has also been found to have a beneficial stimulant effect in chronic fatigue syndrome and in narcolepsy as well. The usual dosage is 200 to 600 milligrams a day. Provigil is not considered an amphetamine, like Dexedrine, Ritalin and Adderall, and there are fewer legal restrictions concerning its use. It is also unlikely to cause addiction, which I see in rare cases with high-dose amphetamine. However, I am still more comfortable with recommending Dexedrine, as it is more effective, and we do not know the long-term risks of taking Provigil.
Some patients find that their cataplexy and narcolepsy also improve with 20 to 60 milligrams of Prozac a day. Xyrem, which we discussed earlier under medications for sleep (Chapter 3), can also be helpful for narcolepsy. Frankly, Xyrem is also likely to help your sleep, growth-hormone deficiency, and pain—and having narcolepsy “benefits” you by giving you a diagnosis that will make it easier for you to get insurance coverage for Xyrem, which costs approximately five hundred dollars a month.
RESTLESS LEG SYNDROME AND PERIODIC LEG MOVEMENT DISORDER
People with restless leg syndrome (RLS) have the sensation that they need to continually move their legs while sleeping. Occasionally, RLS also occurs during the day. Limb movements tend to be repetitive and most frequently involve the legs. A person will often extend his or her big toe while flexing the ankle, the knee, and sometimes even the hip. This can occur with the arms as well, and sometimes even with the whole body.
Another pattern consists of a disagreeable leg sensation and sense of restlessness that is brought on by rest and often relieved by movement. It is not uncommon for your bed partner to be aware that your legs are kicking much of the night or are constantly moving. You may or may not be aware of your own movements. It has been estimated that as many as one-third or more of fibromyalgia patients have RLS. Although the cause of RLS is not clear, experts suspect it comes from a deficiency of the neurotransmitter dopamine. RLS can also be aggravated by iron deficiency (having blood ferritin levels less than 50), nerve injuries, vitamin B12 and folic acid deficiency, hypothyroidism, and other problems. In some people, RLS may be associated with hypoglycemia. Some medications, especially Elavil and perhaps lithium, can aggravate RLS.
DIAGNOSING RLS
If you tend to scatter your sheets and blankets, and especially if you tend to kick your bed partner or if you note that your legs tend to feel jumpy and uncomfortable at rest at night, you probably have RLS. You can also have a sleep study done to look for leg muscle contractions. If contractions occur every twenty to forty seconds and last for about one half to five seconds each, you have RLS. The sleep study will determine whether these leg movements are associated with waking from deep sleep into light sleep to a degree that would be expected to cause daytime fatigue. Leg movements are not considered significant unless one has associated daytime sleepiness—for example, CFS/FMS.
TREATING RLS
There are both natural and prescription approaches to treating RLS. Following are summaries of those that have been found to be most successful.
NATURAL TREATMENTS
Natural remedies for RLS focus on
diet and nutritional supplementation. Avoiding caffeine is important.34 Because RLS may be associated with hypoglycemia, eating a sugar-free, high-protein diet with a protein snack at night may decrease episodes of cramping and RLS at night.35
An estimated 25 percent of RLS patients have low serum iron levels.36 As noted in Chapter 6, if your serum ferritin level is under 50, your doctor should prescribe an iron supplement. I recommend Chelated iron by Ultraceuticals or the prescription iron supplement Chromagen Forte because they also contain vitamin C, which helps the iron to be absorbed. Take iron supplements on an empty stomach. Iron can be toxic if too much builds up in the bloodstream, so be sure that your doctor continues to monitor your serum ferritin level while you are taking one of these supplements.
Vitamin E can also be very helpful, although it takes six to ten weeks of treatment to help.37 Take 400 international units a day. If you have RLS in which pain, numbness, and lightning stabs of pain are relieved by movement or local massage, taking 5 milligrams of folic acid three times a day (available by prescription) is helpful. However, folic acid does not help cases of RLS where there is no discomfort.38
Finally, a few case reports have suggested that taking the amino acid L-tryptophan can be effective. Because it is hard to get this without a prescription, I recommend using the related compound 5-HTP (see Chapter 3, “Natural Sleep Remedies”).
PRESCRIPTION TREATMENTS
Ambien, Klonopin, and Neurontin or Gabitril are the medications I use to treat sleep disorders in patients whom I suspect have RLS. These medicines usually do a superb job in suppressing RLS. Although it is heavily marketed, I rarely use Requip. I tell patients to adjust the dose to not only get adequate sleep, but also to keep the bedcovers in place and to avoid kicking their partners.
Important Points
Getting eight to nine hours of solid, deep sleep a night without premature waking or having a hangover is critical to getting well.
Begin with natural sleep aids. I recommend Suntheanine, wild lettuce, Jamaican dogwood, hops, passionflower, and valerian. These can be found in combination in the Revitalizing Sleep Formula by Enzymatic Therapy.
Because of the severity of the sleep disorder in CFS and fibromyalgia, most patients will need to add prescription medications for at least six to eighteen months. A low dose of several medications is more likely to be effective without next-day sedation than a high dose of one medication. Ambien, Desyrel, and Klonopin are the three best prescription sleep medications. Most regular sleeping pills make you feel worse by keeping you in light sleep.
Take whatever combination of treatments you need to get your eight hours of solid sleep a night.
Treat sleep disorders such as upper airway resistance syndrome (UARS), sleep apnea, narcolepsy, and/or restless leg syndrome (RLS), if they are present.
Questionnaire (see Appendix B for treatments to check off) Disordered Sleep
____ 1. Trouble falling and/or staying asleep? If yes, is it
____ A. Mild (If yes, check #11 and 12.)
____ B. Moderate (If yes, check #11, 12, and 13.)
____ C. Severe (If yes, check #11, 12, 13, and 14.)
____ 1A. Do you only have trouble falling asleep? If yes, check #12 and 19.
For any of the medications above, natural remedies #12, 15, 16, and 23 can be tried first. Also read and follow the directions at the top of the “Sleeping Aids for Fibromyalgia” section in Appendix B.
Restless Leg Syndrome
____ 2. Do your legs jump a lot at night or are your blankets (or bed partner) kicked around a lot at night? If yes, add #11, 12, 14, and/or 17 till legs are still at night. Also check off #78, and if your iron blood tests show a ferritin level under 50 or an iron percent saturation under 22 percent, check off #5.
Sleep-Disordered Breathing
____ 3. Do you snore?
If yes: Sleep Apnea
____ A. Are you more than twenty pounds overweight?
____ B. Do you have periods where you stop breathing?
____ C. Do you have high blood pressure?
____ D. Do you fall asleep easily during the day?
If yes to A, B, C, or D, check off #78. If no, answer question #4.
UARS
____ 4. Do you have nasal congestion or low blood pressure? If yes, check off #79.
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H—Hormonal Support: Optimizing Adrenal, Thyroid, Testosterone, and Estrogen Function
Your body’s metabolism is controlled by a series of glands that create messengers called hormones. These hormones are controlled by feedback mechanisms that are constantly interacting with one another in an elaborate dance that is initiated by the hypothalamus, which is the body’s master gland. It sends hormones to its next-door neighbor, the pituitary gland, which in turn controls the thyroid gland, the adrenal glands, and the ovaries in females and testicles in males. The hypothalamus monitors the levels of the hormones that all these glands make, and tells the glands whether to make more or less. Other hormones regulated by the hypothalamus include oxytocin, growth hormone, and prolactin.
Many factors determine how much hormone the hypothalamus directs each gland to make. A mysterious gland in the brain called the pineal gland makes melatonin and possibly also other hormones, as yet unknown. This gland also likely regulates your body’s circadian rhythm—that is, your day/ night cycles. Many functions in the body are rhythmic. The adrenal gland, for example, makes most of its cortisol hormones during the day. If it makes too much at night, the person has trouble sleeping. Evidence suggests that in people with chronic fatigue, the day/night cycles are off, and adrenal glands make too much cortisol at night and not enough during the day. Stress, such as having an infection, also causes the hypothalamus to direct the adrenals to make more cortisol. These are just a few of the many factors that regulate hormone production.
Functions of the Different Glands
As just noted, the pineal, hypothalamus, and pituitary glands, located deep within the brain, work together to direct and balance the metabolic system (the body’s energy) and the immune system (the body’s defense systems), as well as the autonomic nervous system (the part of the nervous system that controls blood pressure, pulse, sweating, and blood flow to the skin, muscles, and organs). We already know that current evidence suggests that a major portion of the symptoms of CFS and fibromyalgia are manifestations of a poorly functioning hypothalamus, but what roles do the other glands play?
The adrenal glands are really several glands in one. They help direct the body’s defense systems and fluid regulation while also making it possible for your body to deal with stressful situations. If they are underactive, the result is fatigue, recurrent or persistent infections, hypoglycemia with sugar craving, allergies or environmental sensitivities, low blood pressure, dizziness, and poor ability to cope with stress.
The thyroid gland is the body’s gas pedal. It slows or speeds up the metabolism. If it is underactive (that is, if it produces too little thyroid hormone, as is common in CFS/FMS), you can have fatigue, achiness, weight gain, poor mental functioning, and intolerance to cold.
The reproductive glands support and cycle the reproductive system. The ovaries regulate menstruation in women, and both the ovaries and testicles contribute to libido (sexual desire). The male and female states of mind are powerfully influenced by the hormones produced in these glands. Although testosterone is known as a “male hormone,” it is also important in females, as estrogen, the “female hormone,” is important in men. If either testosterone or estrogen is low, the person may feel tired, achy, depressed, weak, or moody. He or she may also feel a loss of libido and suffer from disordered sexual function and hot flashes.
Suppression of the hormonal system plays a dramatic role in CFS and fibromyalgia. This often occurs despite your hormonal blood tests being normal. This chapter will present an overview of how to handle this problem.
The Problem with Blood Testing
Before we begin discussing each of the individua
l hormones, it is important to understand why we cannot rely on blood tests to tell us if there is a hormone-function problem. Many, if not most of you, have had the experience of going to the doctor convinced that your thyroid was low, only to experience the frustration of having the tests come back normal. This was probably not because you do not need supplementation with thyroid hormone. Rather, it is most likely because the testing is not reliable.
By definition, the normal range for most blood tests is created by doing a number of tests and defining only the highest and lowest 2.5 percent of the population as being abnormal (called “two standard deviations”). This does not work well if more than 2.5 percent of the population has a problem. To show how absurd it is to use a 2 percent cutoff, research shows that despite “normal” thyroid hormone levels, antibodies attacking the thyroid gland were present in 34 percent of FMS patients and in 19 percent of “healthy” controls.1
One way to understand the difference between the “normal” range, based on two standard deviations (e. g., your not being in the lowest 2 percent of the population), and the optimal range, which you would maintain if you did not have CFS/FMS, is as follows:
From Fatigued to Fantastic! Page 10