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Winter 2004 

Sleep and CFIDS
Poor sleep affects nearly every person with CFIDS
By Vicki Walker and the National Sleep Foundation

Unrefreshing sleep was found to be the most common of the eight official chronic fatigue syndrome (CFS) symptoms in a recent U.S. Centers for Disease Control and Prevention (CDC) study, affecting 95 percent of people with chronic fatigue and immune dysfunction syndrome (CFIDS). Eighty-one percent complained of problems getting to sleep or waking up early in the morning, making it the most common "non-case definition" symptom.1

Primary sleep disorder is also an important rule-out condition as the doctor and patient consider CFIDS as a possible diagnosis. The likelihood of experiencing a sleep disorder also increases with age and weight gain. According to the Royal Austral-asian College of Physicians, "[CFIDS] patients usually report a longer time to fall asleep, an increased time in bed awake, and a broken and restless sleep pattern."2

However, the reasons for these sleep problems are not understood. Research results have been variable: for example, some studies have found unusual brain wave patterns during sleep, while others have not. Since poor sleep is known to cause memory and concentration problems and pain in other conditions, some wonder whether these symptoms in CFIDS patients could also be perpetuated by sleep problems. Even healthy people can feel sick when deprived of normal sleep.

If your physician suspects you have a sleep disorder, he or she may refer you to a specialist for polysom-nographic testing, also known as a sleep study. The article on page 3, reprinted with permission from the National Sleep Foundation, describes a typical sleep study.

Your sleep specialist may suggest you spend two nights in the sleep lab, because of a new study that suggests CFIDS patients suffer from a "first-night" habituation effect in the sleep lab. This causes the first night’s measurements to be unreliable, so the researchers suggest sleep measurements should only be used from the second night of testing.3

What Goes on in a Sleep Lab?
Are you scheduled to participate in a sleep study? Do you want to know what to expect? Here’s a brief preview, with some suggestions on how to prepare for a successful sleep study.

If you have a sleep problem or disorder, your primary care physician may refer you to a sleep lab or clinic where you will participate in a sleep study. A sleep study (also called a polysomnogram) is a test that records your physical state during various stages of sleep and wakefulness. It provides data that are essential in evaluating sleep and sleep-related complaints, such as identifying sleep stages, body position, blood oxygen levels, respiratory events, muscle tone, heart rate, amount of snoring and general sleep behavior.

Usually you will make an appointment for your visit, which will take place at night. The sleep center may send you forms requesting your medical and sleep history prior to your appointment with the doctor. The form may ask for your bed partner’s responses to some of these questions, since you may not be aware that you snore, stop breathing (sleep apnea) or kick your legs when you sleep. It also may provide tips and some special instructions for your sleep test.

Before your sleep test, you may meet with a physician or sleep specialist, who will go over your medical and sleep history. You may participate in a "split-night" test, in which half the night will be used to diagnose your sleep problem, and the other half will be used to treat the problem. This is sometimes done with patients who are being tested for sleep apnea.

After you arrive at the sleep center, you may be asked to complete a questionnaire on your sleep the night before. Many sleep centers offer a video or other information about the sleep study or specific disorders such as sleep apnea, since a significant percentage of those who have sleep tests are suspected to have sleep apnea. The video may also address what you should expect during the sleep test to ease any fears you may have. Then you will be asked to change into nightclothes.

After changing, someone called a poly-somnographic technician will connect you to the electrodes that will record your brain waves and muscle movements throughout the night. The electrodes are placed in specific areas and applied with water-soluble glue and tape. The electrodes record brain waves, muscle movement, rapid eye movement (REM), air intake and periodic limb movement. A microphone attached to your neck records snoring, and two belt-like straps around the chest and lower abdomen monitor muscle movement during breathing. Despite all of the equipment, most people say it doesn’t disrupt their sleep.

After settling into bed, your technician may go to a monitoring room and ask you over an intercom to perform certain tasks that will show the electrodes are recording properly. You will be observed on a television monitor during the night, but that is to allow the technician to note your body movements during sleep.

When everything is working properly, the lights will be turned off and you can go to sleep. Many patients are so chronically tired that they have no problem falling asleep. While you are sleeping, your brain waves will be recorded to determine when you are awake or in Stage 1, 2, 3, 4 or REM sleep. You will be awakened in the morning and the electrodes will be removed. Since they are applied with water-soluble glue or tape, removal isn’t painful. You will need to make an appointment with a sleep specialist to review the results of your study. You might be asked to complete a questionnaire concerning your sleep the previous night, and then you can go home.

Based on the results of your sleep study, you may be given treatment for a specific sleep disorder. For example, patients with sleep apnea may be prescribed continuous positive airway pressure or CPAP, which is a device that gently blows air into your nasal passages to keep the airway open while you are asleep.

Here is a checklist of items to bring for your sleep test (this may vary according to the sleep center):

• Nightgown, pajamas or any comfortable sleepwear, preferably with a button-down front.
• Your favorite pillow or blanket. Sleep centers provide bedding, including sheets, blankets and pillows, but yours may help you sleep better.
• Toiletries such as a toothbrush, toothpaste, hairbrush or comb.
• Clothes for the following day.
• Any needed medications.
• A book or other reading material.

Here is a list of things to do the day of your test:

1. Wash and dry your hair on the day of your sleep test. Try not to use any hair products, such as gels, hairsprays or heavy conditioners because they may prevent the electrodes from sticking to your scalp.

2. Remove nail polish and/or artificial nails from at least two fingers. The oximeter that is placed on your finger to monitor blood oxygen levels reads this information through the nail, so any polish or acrylic will inhibit an accurate reading.

3. Do not wear makeup. Some electrodes are on the face, so this area must be clean in order to get a good connection.

4. Obtain a normal night’s sleep before the test, unless instructed otherwise by your doctor. Continue to take your regular medications and limit caffeine intake the day of your test.

 Strategies for Improving Sleep

• Establish a regular bedtime routine; go to bed only when sleepy and wake at the same time every day. If you don’t fall asleep within 15 minutes, get up and try again when you are sleepy.
• Only use your bedroom for sleeping or sex; don’t read or watch TV in bed.
• Avoid napping, if possible, or limit naps to 30 minutes.
• Use sleep medications judiciously. Some things that have helped include: over-the-counter medications like diphenhydramine (in Benadryl and Tylenol PM), prescription drugs such as tricyclic antidepressants and hypnotics, and nutritional supplements like melatonin and valerian.
• Relieve pain to the greatest extent possible, since pain interferes with sleep.
• Exercise within your limits — gentle exercise and stretching can improve sleep — but don’t do strenuous exercise within six hours of bedtime.
• Avoid caffeine, alcohol and tobacco. Limit fluids, spicy foods and heavy meals in the evening, but consider a light snack before bedtime.
•  Control noise, light and temperature in your bedroom.

Tips courtesy of the Royal Australasian College of Physicians and the National Sleep Foundation.

This article was reprinted with permission from the National Sleep Foundation. For more information about sleep (including a free sleep diary to keep track of your sleeping patterns), visit the National Sleep Foundation Web site at www.sleepfoundation.org.

References

1. Nisenbaum R, Jones JF, Unger ER, Reyes M, Reeves WC. A population-based study of the clinical course of chronic fatigue syndrome. Health and Quality of Life Outcomes 2003,1:49.
2. Working Group of the Royal Australasian College of Physicians. Chronic fatigue syndrome. Clinical practice guidelines — 2002. Med J Aust 2002;176 Suppl:S23–56.
3. Le Bon O, Minner P, Van Moorsel C, Hoffmann G, Gallego S, Lambrecht L, Pelc I, Linkowski P. First-night effect in the chronic fatigue syndrome. Psychiatry Res 2003:120(2):191-9.