CFS Chronicles - Part 1

jny published on
8 min, 1421 words

Categories: Mental Health

Tags: cfs

This post (or rather me collating the data contained wherein) has been a long time coming. Really I should have started recording back at the beginning, but -as with many problems- at first it didn’t seem like it was a problem, and then it was too big of a problem to analyze. Now, in the future of the past, my goal is to keep it documented what I did and when. Every stupid thing I tried, every test and theory, every doctor and every supplement. In addition to this being the main crux of this blog (at least for the CFS third), collating all possible cures might prove useful to someone, somewhere in the future. That’s a very distant hope.

And while I refer to it as “Chronic Fatigue”, there are a lot of other weird, bizarre symptoms that may show up and then fade away. The main crux is oversleeping and never feeling rested, but there’s also a giant menagerie such as dizziness/drowsiness, lack of mental clarity, being nauseated and tired after eating, beaches and visual problems. Eventually I made a list of all these things to take to the doctor, but that’s getting ahead. In the beginning, it was just about being tired.


Was unable to program.

Depression was getting better; mental was limited by physical.

January 2013 - Sleep Study

While I’ve always “needed more sleep” as my mom always told me, it very slowly got worse and worse to eventually become an annoyance. When I finally went to ask my family doctor about it, he said there were two things that generally effected quality of sleep: (1) sleep disorders such as apnea and (2) depression. Because I was already being treated for depression, sleep disorders seemed the next logical step. Instead of a full sleep test, the doctor gave me a “home test” and then if that showed anything, I’d do a “real” sleep study. Needless to say, the test revealed nothing out of the ordinary.

This was the first time I was let down by western medicine, not that nothing was found but that I was dead-ended without any effort made. No referrals to specialists, just a “well that’s it.” I wasn’t even given a copy of the test results, just a verbal “everything’s normal”. At the time I believed that doctors were the wise sages of the human body, so I believed what he said, that nothing else could really be done, especially for something that is annoying but not disruptive.

February 2013 - Gluten Free Diet

I had had several friends that had gone through similar health problems, several of which found gluten one of the key components. Because I still felt dead-ended with western medicine -and going gluten-free costs very little compared to dozens of supplements- I decided to try it, with only a fair amount of regularity and absolutely no success.

March 2013 - EDS

As time went on and my conditions (mostly fatigue/lack of restful sleep) continued to worsen, my mother referred me to a friend of a friend who practiced something called “Electro Dermal Stress Analysis” (or EDS). While there is supposed an amount of science behind the process (though still not approved by any major medical body), I found it extremely suspicious. The basic idea is you hold a metal thing connected to a wire in one hand while the EDS practitioner takes a prong connected to another wire and pushes on various parts of your body. Apparently it’s related to acupuncture and eastern medicine, but for me I found it to be woefully underwhelming. The machine would beep when the practitioner pressed, but sometimes it would barely beep, so he’d press again at which point it would beep louder and he would be satisfied. Sometimes he would retry multiple times. The session ended with me receiving a foot bath with some special salt or whatnot to cleanse toxins which would supposedly make the color darker (to be more impressive, I guess), and then by taking a nap on a table with some kind of crystals underneath. Yeah.

This was first time that I was let down by alternative medicine. I’m not going to pretend that I understand the process behind it (if there is one), but ultimately that’s the point: for this type of alternative medicine, you aren’t supposed to understand. The enlightened practioner makes a diagnosis and you, as the patient, accept it and do whatever you are told without question. Not that I was told nothing; I was given supplements and told what bodily system they were treating, but not the actual problem was and how the supplements helped. And really the diagnosis covered such a wide variety I wondered if the approach wasn’t just “throw everything at the wall and see what sticks”:

  • Metatox = mercury, ethyl, lead
  • KLS Plus = kidney, liver, spleen drainer
  • Irie = depression, anxiety
  • Adrena Plus = energy adrenals
  • Thryo Plus = Thyroid Plus
  • Intestinal Formula = intestines
  • MG/K [Magnesium/Potassium]

Nevertheless, I did take all of the pills prescribed (about $350 worth), a staggering 18 pills and 100 drops a day. I took this for months, with a better than fair amount of regularity, and saw no noticeable difference over the long term.

May 2013

What started out as an annoyance in the beginning of the year moved to something a bit more disruptive by mid-year. I could still function, but it was getting more and more difficult. Here’s an email I wrote to a family member about my condition at that time:

It’s really hard to describe. It doesn’t really feel like a lack of sleep, since I’ve pulled an all-nighter a ton of times and I know what that feels like. An all-nighter feels like your brain is just going numb and you cannot even process what’s going on around you. My fatigue feels more like I am perfectly awake and conscious, I just don’t have the energy to devote to deciphering it all and reacting. It feels like a car that has no problems, it’s just out of gas. Other than that, I don’t know how to describe it. I have a really hard time getting out of bed in the morning, regardless of how much sleep I got last night, which is why I usually set 2-3 alarms. Some days even when I’ve been able to force myself to get up (or because of the dogs) on the first one, I just cannot wake up, so I have to go back to bed.

In terms of how often, it’s hard to say. I have a hard time waking up pretty much every single day, and I never feel rested, except usually there’s about 1 hour of the day that I feel energized, and the hour varies. Then every once and a while I have “crashes” that last a few days, where I sleep for 16 hours and feel utterly exhausted when I am awake. I’m not sure how often they are, maybe once every 2-3 months. I haven’t been keeping track, but I just had last week so I guess we can see how long until the next one.

I haven’t really been paying attention to when I’m eating, but I think it’s about 15 minutes after that I feel even worse (like collapse into bed worse) and that lasts for maybe an hour. One other symptom that I’m beginning to think is related is that ever since I had the flu about a year ago I’ve been really sensitive to sounds. Like hearing certain sounds make me feel disoriented. “Dizzy” is another word I would use. It kind of even makes me feel tired, or at least wanting to lay down. It used to be really bad, to the point that I could hardly pay attention in class to certain professors due to his voice or the buzzing of the lights overhead, but it very slowly got better over time. But then after last week, it feels as though it’s come back a bit.

In the end, 2013 was an absolutely fruitless year for me concerning this issue. And while I was unaware of just how much of a problem it would become, in hindsight I still wish I had done more and been more focused.

What was actually found

Older tests indicate that I had a slightly higher RBC count (6.06 compared to 5.80), but I would later learn that this is also just an indication of dehydration.