By K. Kimberly McCleary, President & CEO
Sleep. It seems like it should be the most easily accomplished function of daily life. But for millions, including people with CFS, healthy sleep is elusive. Traditionally sleep was thought of as a passive state in which all voluntary activity stopped and the body conserved energy. Edgar Allen Poe referred to it as a “little slice of death.” But more modern research and study shows that sleep is a very active process. Our metabolism actually decreases only 5-10 percent when we sleep. During sleep, our immune, skeletal, muscle and central nervous systems repair and grow new connections, making it essential to health and quality of life.
So, in a condition like CFS, whose definition includes “unrefreshing sleep”* as a characteristic symptom, what are the consequences of poor sleep? What can be done to improve sleep and maximize its benefits even in the context of chronic illness? Here are some resources to help address these questions.
A three-part series from the CFIDS Chronicle examines sleep and its role in CFS:
- Part 1 of 3: Learn about the mechanisms of sleep and its effect on the body. View the PDF
- Part 2 of 3: Learn about the role sleep plays in refreshing our brains and regulating our hormones — and how lack of sleep can affect the process. View the PDF
- Part 3 of 3: Learn about the role sleep plays in fighting off illness, as well as medications used to aid sleep. View the PDF
Dr. Lucinda Bateman, a physician who cares for many patients with CFS and fibromyalgia in her Salt Lake City medical practice, provided this advice about achieving the most restorative sleep possible (from “Pearls of Wisdom from a CFS Physician,” the CFIDS Chronicle):
“Universally I’ve heard from patients that the better they sleep, the better they feel and function. The trick is figuring out how to accomplish this, and the solutions definitely vary by patient. Improved sleep immediately helps not only fatigue, but pain as well, and it probably improves cognition, mood, headaches and immune function to some degree. Natural sleep is always best, but the unfortunate fact is that most CFS patients struggle with chronically disrupted and unrefreshing sleep that’s not easily fixed. There is no doubt that left untreated, even for a few days, sleep disruption worsens most aspects of CFS.
Unfortunately there’s no perfect remedy for sleep. Practicing good sleep hygiene—such as consistent bedtimes and reducing caffeine intake—is imperative, but often not enough. Even the best of medications used for sleep have modest success, and some may even have adverse effects that can actually make sleep less restorative. Sleep medications may change the architecture of sleep, alter daytime cognition or worsen fatigue, so they should be used in the lowest effective doses and, as much as possible, directed at the cause(s) of sleep disturbance.
It may be useful to undergo polysomnography (a sleep study) if single drugs or low doses are ineffective. If medication is necessary, it may be helpful for your health care professional to choose one that also treats other symptoms you may have. For example, while primarily improving sleep, drugs like Lyrica (pregabalin) or Neurontin (gabapentin) may reduce pain, and Elavil (amitriptyline) may keep IBS symptoms in check. Achieving restorative sleep is an ongoing mission, but one well worth the attention.”
Dr. Charles Lapp, director of the Hunter-Hopkins Center in Charlotte, North Carolina, describes sleep this way (from the Center’s Stepwise Approach to therapy:
“Most of my patients complain that sleep is like butting their head against a brick wall all night long. Klonopin (an anti-seizure drug) and doxepin (a tricyclic drug) are the cornerstones of our therapy, followed by trazadone and maybe a hypnotic like Ambien. We have had some success with using low doses of melatonin at night and bright-light therapy in the morning. Relapse is an inevitable part of CFS and fibroymalgia. Perhaps the most common perpetuator is a lack of sleep. It is not unusual for sleep to deteriorate during a relapse, and attempts must be made to ensure a regular, scheduled sleep. Eight to nine hours of sleep nightly are generally recommended, but it may be necessary to sleep longer during ‘down times.’”
One of the more consistent research findings about sleep and CFS is the finding of abnormal heart rate variability during sleep. In a future post, we’ll look more closely at this issue and its relationship to other autonomic nervous system problems that are common in CFS patients.
Research on the sleep problems associated with CFS continues, as does study of medications that may help improve restorative sleep. For more information about common and potentially treatable sleep disorders, the National Sleep Foundation provides some helpful resources. This site from Harvard Medical School’s Division of Sleep Medicine houses some great information and interactive tools about the science of sleep and the importance of sleep in health (and disease).
*The 2003 Canadian consensus definition for ME/CFS requires the presence of “sleep dysfunction,” identified as ”unrefreshed sleep or sleep quantity or rhythm disturbances such as reversed or chaotic diurnal sleep rhythms.”
K. Kimberly McCleary has served as the Association’s chief staff executive since 1991.