How To do a Sleep Study for People with Chronic Fatigue Syndrome (ME/CFS)

The right kind of sleep study for people with ME/CFS

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    Sleep studies play an essential role in identifying undiagnosed sleep disorders. It's possible to wake up hundreds of times of night or rarely enter into deep sleep without knowing it.

    One parent found that sleep study indicated his daughter with ME/CFS woke up hundreds of times a night. She was able to improve her health and quality of life using the results of the study.

    In sleep studies your brain waves, breathing patterns, the number of times you wake up, the stages of sleep you enter into are all measured. They can be expensive – costing as much as $2,000 - but can also play a major role in improving your health. You may wish to get a preauthorization from your insurance company before doing one.

    The National Sleep Foundation reports that if you answer yes to any of the questions below you are a candidate for a sleep study.
    • Do you regularly have difficulty getting to sleep or staying asleep?
    • Do you have a problem with snoring? Has anyone ever told you that you have pauses in breathing or that you gasp for breath when you sleep?
    • Are your legs “active” at night? Do you experience tingling, creeping, itching, pulling, aching or other strange feelings in your legs while sitting or lying down that cause a strong urge to move, walk or kick your legs for relief?
    • Are you so tired when you wake up in the morning that you cannot function normally during the day?
    • Does sleepiness and fatigue persist for more than two to three weeks?
    If you don't have the resources to do sleep study ‘home sleep studies‘ can be done.

    One ME/CFS and FM expert, Dr. Lucinda Bateman, has found that the commonest findings in ME/CFS sleep studies are movement disorders that cause patients to jerk and wiggle and wake up. She said “You wake up all night long, but never enough to know you have a problem; that creates daytime sleepiness.”

    Sleep studies suggest that primary and treatable sleep disorders are present in about twenty percent of people with ME/CFS.

    Sleep Study Recommendations.

    Not all sleep studies are created equal. Some may miss some types of sleep disorders. Dr. Klimas recommends that patients see a neurologist rather than a pulmonologist for their sleep study.

    The National Sleep Foundation recommends that the sleep lab or sleep center be accredited by the American Academy of Sleep Medicine (AASM) and that a certified sleep specialist and a registered polysomnographic technologist (RPSGT)) lead your study. (A list of accredited sleep facilities is available at www.aasmnet.org. Some insurance companies may require that a sleep study be done in an accredited sleep center.)

    Sleep studies should include an EEG to provide sleep stage data, waking and total hours of sleep, respiratory monitors to measure airflow and blood oxygen and checks of leg movement (restless leg syndrome) and upper airway resistance syndrome (UARS).

    Do It Yourself Sleep Studies

    Do it yourself sleep studies can pick up signs of sleep apnea and restless leg syndrome - and provide you data you can use to convince your doctor to have you do a sleep study.
    • Sleep Aps - Smartphone apps can help you detect sleep apnea
    • Videotaping - – Videotaping yourself while you sleep can tell if you snore, if you have move around a lot at night (have restless leg syndrome),or if you stop breathing at times (have sleep apnea).