My husband Luke was unofficially diagnosed with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) in 2014, though looking through his running logs (he was a competitive runner in his past life), he can trace his symptoms all the way back to 2003.
For anyone who is unfamiliar with CFS/ME, it’s basically an almost impossible illness to diagnose (hence the unofficial diagnosis). It kind of feels like a doctor’s way of saying “I don’t know what else to diagnose you with, so you must have CFS.” If you’re really interested, I very highly recommend you watch a documentary called Forgotten Plague, which chronicles the lives of a few patients and talks about the difficulty we have getting funding for research.
Symptoms include extreme fatigue (not just feeling sleepy but deep in your bones fatigue), increased susceptibility to illnesses, headaches, digestive problems, brain fogginess, sleep problems including insomnia (oh the irony), and more. In sum: it’s awful, and without the understanding of its root cause, doctors can’t really treat it.
Anyone who knew my husband when he was running knew him to be energetic, laid back, funny and ridiculously skinny because, well, that’s what happens when you run 70-some miles per week.
At his lowest, about two years ago when he finally went to see a doctor, Luke had next to no energy and couldn’t walk for 20 minutes without getting sick the next day. He had also put on a substantial amount of weight (for him–he was really just about at a normal person’s weight for his height, but without being able to run, his muscle mass was quickly deteriorating). We were left just scratching our heads, wondering what in the world happened??
We still don’t have any concrete answers, but I’ve done a ton of reading on the subject, and have some theories based on what I’ve read and how Luke’s decline has gone. He’s nowhere near normal, but his health and quality of life has significantly improved as we’ve slowly added things into our daily life/routine that have helped.
The biggest piece of the puzzle fell into place when his doctor suggested that he might have Leaky Gut Syndrome. (Sidenote: if there were ever a competition for the worst illness names, I’m pretty sure Leaky Gut and Chronic Fatigue would be the top two battling it out).
Basically, Leaky Gut is exactly what it sounds like: a leak in your gut. Imagine the whole host of problems that happen when stuff that’s supposed to move through your intestines gets out and ends up in your bloodstream instead. Like CFS/ME, Leaky Gut isn’t taught in med school, and most doctors won’t even look for signs to diagnose it. The fact that Luke had a doctor who mentioned it is something of an anomaly, but I’m glad she did because it set us up on the path to start a new way of eating that, so far, has helped Luke feel better, even if he’s nowhere near normal.
Next up: How I found the 45 day reset diet and how it’s working so far!