The Short Of It

In 2013, I unknowingly acquired Myalgic Encephalomyelitis or "Chronic Fatigue Syndrome" (ME/CFS). The onset was gradual, and no one knew what was happening.

I began seeing sleep doctors and learned I had sleep apnea and idiopathic hypersomnia (daytime drowsiness that doesn't improve with sleep). I've likely always had these conditions, but they became my focus until late 2017, when I finally figured out I had ME/CFS.

A few weeks later, the disease abruptly changed and became quite severe. I became mostly bedbound and began getting migraines, among many other new symptoms. 2018 was dark. I've made small improvements since then, but the disease is still quite severe.

ME/CFS is a lot like post-concussion syndrome. It sets limits. If you push past your limits, you "crash" and get a painful flare up of flu-like symptoms that can last for days. This is called Post-Exertional Malaise (PEM); it can occur days after whatever triggered it, and it's a primary feature of ME/CFS. If you push and crash often, your illness gets worse. I spent about five years pushing and crashing, which led to my current, severe condition.

My worst symptoms are:

I'm currently working with an ME/CFS specialist, as well as several neurologists. I have a good team of doctors, but there is no cure. I've tried many treatments, and there are always more to try, but full recovery is rare. For now, I'm doing my best to live within very tight limitations.

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Resources

Want to learn more? There's a lot of misinformation out there; here are some sources that I find helpful:

Quick Facts from #MEAction

Unrest: an accurate and compelling Emmy-nominated documentary about the disease; this is honestly the best place to begin.

Do I Have CFS?

CFS Self-Help: Advice on managing activity levels to minimize symptoms, also known as pacing

Health Rising: the latest ME/CFS related news

Open Medicine Foundation: cutting edge ME/CFS research

MEpedia: a patient-run resource

Phoenix Rising: smart & deep patient forums

r/CFS: quick, newbie-friendly discussions & chats

Clinician Coalition: information for healthcare providers, including free CME credits

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