Better Sleep Month Series
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 because I'd heard so many similar descriptions in my forum. But then I had some symptoms that didn't fit either ME/CFS or my suspected celiac (tests are pending) and did some investigating.
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.
Have you experienced any symptoms of narcolepsy? Do you have narcolepsy, or suspect you do? Did your doctor rule out narcolepsy before diagnosing you? Share your thoughts and experiences by leaving a comment below!
- Sleep Studies for Fibromyalgia & Chronic Fatigue Syndrome
- Overcoming Barriers to Sleep with FMS & ME/CFS
- Improving 'Sleep Hygiene' with FMS & ME/CFS
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