The problem with diagnosing Sleep Disorders

content provided by the Faculty of the Harvard Medical School

When to seek help

The American Academy of Sleep Medicine recommends seeking medical advice if sleep deprivation has compromised your daytime functioning for more than a month.

You shouldn't hesitate to ask for help when you're sleeping badly following a death in the family or some other stressful event. A physician may suggest the short-term use of a sedative to help you sleep at night and thus cope better during the day and prevent development of a long-term sleep disorder.

A sample sleep history questionnaire Your physician may ask you some of the following questions during an evaluation for a sleep problem. You may find it helpful to write down your answers to these questions and bring the completed questionnaire to the exam so you and your doctor can discuss it. What bothers you most about your sleep habits? How long have you had trouble sleeping, and what do you think started the problem? Did it come on suddenly? How would you describe your usual night's sleep? What time do you go to bed, and when do you wake up? How long does it take you to fall asleep? Once you're asleep, do you sleep through the night or wake up frequently? What's your bedroom like? What do you do in the few hours before bedtime? Do you follow the same sleep pattern during the week and on weekends? If not, how are weekends different? How well do you sleep on the first few nights when you're away from home? At home, do you sleep better in your bedroom or in another room in the house? Do you often feel sleepy during the day? Do you fall asleep at inappropriate times or places? Have you ever been in a car accident or had a close call because you nodded off at the wheel? Do allergies or nasal congestion bother you at night? Do you have physical aches and pains that interfere with sleep? What medications or drugs (including alcohol and nicotine) do you use? Have you ever taken sleep medications? If so, which ones? Do you often have indigestion at night? Do you ever feel discomfort or a fidgety sensation in your legs and feet when you lie down? Do you have to get up and walk around to relieve the feeling? Do you kick or thrash around at night? Do you ever have trouble breathing when you lie down, or do you awaken because it's hard to breathe? Does your bed partner or roommate mention that you snore loudly or gasp for air at night? Do you ever awaken with a choking sensation or a sour taste in your mouth? Do you wake up with a headache or with cramps in your legs? How have you been feeling emotionally? Does your life seem to be going as well as you would like?

It's not always easy for people to get evaluation and treatment for a sleep problem. Doctors trained in the United States receive less than two hours of instruction on this topic during four years of medical school. According to a survey conducted by the National Sleep Foundation, most primary care physicians do not routinely ask their patients about sleep. And while most of the physicians who took part in the survey admitted they had limited knowledge about sleep-related matters, more than half did not consult with an expert in sleep medicine. This puts the responsibility on you to seek out the help you need.

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I reported to one of my doctors that I collapsed into bed at 5 PM, too exhausted to function any longer, but didn't fall asleep till 5 AM.  Then I forced myself to get up at 7 AM (the time I had always had to get up to go to work), so that I wouldn't get out of the habit of getting up on time for when I returned to work.  He didn't consult an expert in sleep, he didn't hear the part about "tossing and turning in pain", the only thing that registered with him was that I went to bed at 5 and got up at 7, which he interpreted as "sleeping too much".

I never got a sleep study to document how little I was sleeping and how poor the quality of that sleep was.  As a result, I didn't get anything to treat either the sleep disturbance or the pain that was keeping me awake.

Eventually, I got to a doctor who was trained better about sleep disturbance.  He had me keep a sleep diary: when I went to bed, how long I was awake before I fell asleep, how many times I woke up during the night, how long I was awake before I fell back to sleep.  He diagnosed "SEVERE sleep disturbance" where the prior doctors had been convinced that I had no sleep disturbance at all.  When I got effective sleep medication, I slept through the night, my immune system revved up enough to fight off the virus, I lost 30 pounds...

Clete Kushida, MD, PhD, head of Stanford University Center for Sleep Research, says "Sleep deprivation puts a strain on the heart and the brain and can have an effect on glucose metabolism".  In other words, lack of sleep can cause you to gain weight.  Inadequate sleep can also affect production of the stress hormone cortisol, "which can have a detrimental effect on nearly all systems of the body".

The Rite Health Journal observes "Sustained sleep deprivation -- on the order of getting only four hours of shut-eye a night over 12 consecutive nights -- is associated with significant increases in pain".  At the time I finally got sleeping pills, I'd been averaging 2 hours a night for 3 YEARS.

There is research showing that fibromyalgia-like symptoms can be created in healthy volunteers simply by depriving them of sleep, and those symptoms go away when they are allowed to return to normal sleep patterns.  Yet, even the doctors who diagnosed fibromyalgia never considered that sleeping pills might fix that problem; apparently, they were completely unfamiliar with that research.

First, a CFS expert told me to take 5HTP (see www.DrRodger.com) to improve the quality of my sleep (you'll have to play with the dosage to find the one that puts you to sleep; my case of insomnia was too stubborn for just one capsule).  Then I got a Sleep Number bed -- you can try one for 30 days and if you don't like it, return it owing only the delivery fee.  After one week on the Sleep Number bed, I considered my fibromyalgia a thing of the past -- although I still have pain at the test points when the doctor presses on them, the 24/7 pain just from existing is gone.  When I finally got pain pills this spring after 7 years of begging for them, I had the last piece of the puzzle, and am starting to improve.

The simple fact is, I asked for sleeping pills and pain pills at my first doctor appointment in 2000, based on the recommendation of the virologist who diagnosed me in 1988.  I improved when I finally got them.  The only possible conclusion is that if I'd gotten what I asked for when I first asked for them, I would've been back to work in a couple months.  Instead, I've been told by a specialist that I deteriorated too far and will never return to full-time work again.

Although insomnia does not "cause" true CFS, treating the pain/sleep disturbance so the patient can sleep 8 hours a night will allow the body to start healing itself.  Quite a few of my symptoms are significantly reduced now that I'm sleeping better.  

Tags: CFS, insomnia, sleep disturbance, pain