Chronic Fatigue Syndrome or Narcolepsy?

Surprisingly Similar Symptoms

A girl in a red dress sits on a couch, her mouth stretched wide in a yawn.
Betsie Van der Meer/Getty Images

At first glance, it seems silly to suggest that chronic fatigue syndrome (CFS or ME/CFS) could be connected to narcolepsy. In part, however, that's because narcolepsy is almost as misunderstood as ME/CFS. Most of us only know what we see in the popular media, where narcoleptics regularly nod off at comically inappropriate times. It's a lot more than that, and the closer you look, the more it looks familiar.

I'm going to give you a list of symptoms - see if you can figure out which condition they go with:

  • Excessive daytime sleepiness that's not relieved by rest
  • Word slurring
  • Buckling knees
  • Forgetting things you've done
  • Being unable to complete a sentence

Which do you think it is? The answer is both.

I've been dealing with narcolepsy symptoms lately, including the ones above and several others that aren't indicative of ME/CFS. (I believe it could be linked to gluten intolerance, and while there are theories about that none have been proven.) At first, I feared that I'd developed ME/CFS, but then I had some symptoms that didn't fit.

As I learned more about narcolepsy, I realized how easy it would be for a doctor to mistake it for ME/CFS and vice versa - especially since we don't have universal, widely accepted diagnostic tests for ME/CFS. A few doctors and medical experts are looking into possible connections between narcolepsy and neurological conditions, including both ME/CFS and fibromyalgia (FMS). Some researchers have recommended ruling out narcolepsy before diagnosing ME/CFS, but it hasn't become a common practice.

This shored up my belief that those of us with these conditions should have sleep studies, both to help with a diagnosis and also to guide our treatment. I'll delve into the other reasons for this next time. For now, here's a list of other narcolepsy symptoms I hope you'll familiarize yourself with:

  • Cataplexy: A sudden loss of muscle tone, sometimes triggered by intense emotions. It can lead to weakness, collapse, and temporary paralysis.
  • Sleep Paralysis: The short-term inability to move or speak either while you fall asleep or wake up.
  • Hypnogogic Hallucinations: Hearing, seeing or feeling things that aren't there as you start to fall asleep.

The sleep attacks we generally associate with narcolepsy don't happen to everyone. As with FMS and ME/CFS, not everyone with narcolepsy has the same set of symptoms or has them to the same extent.

If you think you could have narcolepsy, bring it up with your doctor.