Insomnia Forum Posting

Posted by Honest Expert / but only mattresses on June 16, 2001 at 15:05:57:

In Reply to: You're all going to hate me posted by Maggie on June 09, 2001 at 17:46:12:

Hi Maggie,

What you are describing -- sleeping very long times, yet still sleepy and fatigued during the day -- sounds like one of the classic patterns of Sleep Apnea: You "sleep" but you never get rested. Narcolepsy, Restless Leg Syndrome (RLS) and Periodic Limb Movement Disorder (PLMD) could fit your description, also.

Now, you said that you have been working extensively with your doctor and that you have had 3 "inconclusive" sleep studies. You also described other things for which you have been tested.

Here are the two things that concern me:

The first is that -- as a rule of thumb -- you CANNOT sleep more than your body needs. Research seems to show that sleep demand is biologically programmed and that the body keeps a running total on whether or not you have met that need. If you fall short of "the right kind of sleep" on one night, the body carries that need over to the next night. If you fall short on the second night, the body carries both night's shortages over to the third night, and so on. It accumulates. This is what you will often see called "sleep debt."

The thing is, the only way that sleep debt can be "paid off" is by sleeping; by "paying off" the total amount of accumulated need with "the right kind of sleep." BUT! once you do, you couldn't go to sleep, even if you wanted to (not until you have been awake long enough to build up some more sleep debt).

Your continual sleepiness seems to indicate that you are carrying a MASSIVE sleep debt -- built up (accumulated) over many years -- and your "sleeping" for particularly long periods and still not getting better seems to indicate that you are not getting "the right kind of sleep." (In other words, if your long-sleeping were reducing your sleep debt, you would eventually hit a point where you simply COULDN'T sleep anymore and you would be overflowing with energy. Since it is not, it indicates that your "sleep" is not being productive.)

The second thing that is a concern to me has to do with you being "tested" for Chronic Fatigue Syndrome and coming up negative (which was undoubtedly done by your doctor).

(It is now MY TURN to be hated!)

Chronic Fatigue Syndrome is a garbage pail diagnosis: When there is a great and lingering level of fatigue that a doctor cannot find a cause for, it gets labeled "Chronic Fatigue Syndrome." There is no known cause and -- what is most telling -- there is also no identifiable pattern that leads people to it. You would think, with the millions of people who have received this "diagnosis," there would be some sort of pattern of causation exposed. But, as it turns out, there seem to be a thousand ways to "get it."

Because there is no real "thing" that is "Chronic Fatigue Syndrome" -- it is only a collection of symptoms of an unknown cause -- there is no real way to "test" for Chronic Fatigue Syndrome. If you are chronically fatigued and no one knows why, you can automatically be said to be suffering from "Chronic Fatigue Syndrome." (Yes, some doctors will say "you are" and some doctors will say "you aren't," but there is no objective STANDARD for "Chronic Fatigue Syndrome": You "have it" if some doctor SAYS you have it!)

There IS NO *REAL* TEST from which you can come up "negative." If your doctor has given you one, you should be highly suspicious! (I AM!) Which means you should also be highly suspicious whether she has the "tools" (knowledge) needed to truly help you solve your problem.

I'm sure she is a wonderful doctor in many many ways, but if she is lacking the knowedge YOU NEED to get better, then you need to make a sound business decision: You need someone who better understands YOUR situation.

If your doctor truly thinks Chronic Fatigue Syndrome *IS* something (other than a description of symptoms with no known cause), you should probably seek advice from a new doctor. And don't worry about "hurting her feelings": It is YOUR health that is at risk and she doesn't seem to be able to help ... nor understand the complexities involved.

Sorry to be blunt, but I think you need to completely start over (new doctors/new testing labs) to find an answer to your problems. I'm not convinced the people you have been dealing with understand the complexities of your situation and the complexities of sleep.

Good Luck,
Honest Expert

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