This is a synopsis of my experiences coming down with Chronic Fatigue Syndrome/ME/Fibromyalgia symptoms and living with them. I have a longer, more real-time series of blog posts about my gradually realizing what I had, and the various twists and turns the disease and my education took, but this’ll just be a quick synopsis.
In early 2015, I was 37 and in the best shape of my life. I had had some irritating bowel issues for a couple years (constipation, bloating; interestingly, these largely went away when I got CFS symptoms), but aside from that, I was feeling good. I was exercising regularly; I could easily run four miles at a decent rate, I could do ten pull-ups in 30 seconds or so, I could do 25 push-ups easily.
In April of 2015, a few weeks before the major CFS symptoms began, I got food poisoning while visiting in Panama. I was out of commission for a couple days. Have no idea if it’s related to my illness, but many acute-onset CFS cases are preceded by virus/bacteria diseases, so worth mentioning.
A week or so after arriving home from Panama, I went for a run and noticed I had no energy in my legs; my legs felt like blocks of wood; they had no “push.” I also noticed when I did push-ups that they had become much harder. An analogy I’ve seen before that is apt; if a human body is a battery, I felt like I was at like 10% power.
Around the same time, I also noticed other weird changes in my body. Not long before I noticed the above, I had gone for a run and had gotten a strange single spot of pain in my leg, unlike anything I’d ever had before, that caused me to stop running and limp back home. I noticed that I was sweating more than usual, just sitting around doing nothing. Weird things.
Not long after noticing the weakness, I got pain. Not intense pain, more like an aching pain in my arms and legs that was not like any pain I’d ever experienced. It was not like workout pain; it felt more like my muscles contained some slightly corrosive chemical that burned slightly, constantly, but especially after working out. Workout pain had always felt good; this felt bad.
Throughout the onset and duration of the disease, I tried to work out, although it was difficult and I can’t do much. It was hard to even climb stairs. So I didn’t exercise often, as it was so difficult mentally and physically, but I figured the more I could stay active, the more it would help combat whatever was happening. (Although as I learned more about the disease I was no longer sure that was true. But I do think a little exercise is good no matter what to avoid deconditioning/atrophy.) Nothing I did felt good or helpful in any way; if I exercised too hard, I felt very weak and out of it.
More symptoms developed over the first few months.
One of the worst symptoms was the pain. There was a slight aching everywhere, but especially after exertion. But worse than that was that my body became extremely sensitive to things that used to be normal. So, for example, pushing with my finger on pretty much any part of my body, especially the more fleshy parts, caused pain. Not a lot of pain, but more than should have been there. If I stubbed my toe, it would hurt five times worse than it should have. Things like that. I was very sensitive to cold and cold water; I used to enjoy taking cold showers to wake up, and enjoyed doing ‘polar plunge’ type things; this was now unthinkable because it was too painful. I could feel the pulse/rush of my blood in my veins and chest when lying still at night; it was a very unpleasant sensation. All of this was very aggrevating and still is (although it got a lot better after the 2-year mark).
The other bad symptom was my lack of control over my body. Fine motor controls were shot; it was hard to operate my phone, it was hard to control lots of things with my hands. I felt perpetually clumsy and this created a feeling of rage/frustration that seemed out of proportion to the symptoms. (While this improved a lot over the 2-year mark, I still have this. Typing this now, my hands seem clumsy and unresponsive; combined with the constant, slight pain whenever I flex any muscles, it is amazingly irritating.)
At one point, a few months into the disease, my body went through some sort of strange adjustment process. My legs and arms became very tight and painful. For a few nights, I had to sleep with pillows under my knees and elbows, because it was too painful to have them all the way outstretched. It was almost like my body was undergoing some change to adjust to the disease. ( haven’t seen anyone else with CFS talk about a similar thing yet.) The great pain period lasted for a few weeks, then just ebbed away.
But the worst symptom were cognitive; after a few months, it became obvious to me that I was having cognitive issues. In the first few months, I wondered if it was just depression-related; that I felt slow and weird just because of the immensity of the disease and how much it had impacted my life. But I started to realize like a year into the disease that I was having more and more cognitive issues that would be hard to explain by just depression.
Some of these cognitive/head issues:
- Mental ‘fog’ and physical/mental malaise; people with CFS often describe this mental slowness/degradation as a ‘fog’ and I think it’s pretty accurate. Mine was undoubtedly a lot better than the much-worse-case CFS sufferers, but it was very miserable. I often described it as feeling like you have the malaise of the flu, when you feel just horrible and dead physically and mentally, without the other normal flu symptoms. This mental malaise was one of the worst things; there were days when this was at its worst that I didn’t know how much longer I could take the disease.
- Extreme forgetfulness. I would forget my train of thought frequently. This is very unusual for me.
- I would forget the words I was writing in the middle of a sentence. I would forget common words when speaking.
- I would write a sentence and look back and realize I’d forgotten several words from it. All of the above, as a writer, were very worrisome and disturbing and abnormal for me.
- Long-lasting headaches. I never used to get these.
The scariest incident I had was when I was playing poker in L.A. in mid 2016. (Short preface for this story and why it was so disturbing and impactful to me; I used to play poker professionally and have written several popular books on the subject.) I was playing in a $5-5, $1K max buy-in cash game. During the course of playing in this game for only five hours, I lost $3,000. This is a lot to lose in that game; I’ve never before lost near that amount in one session in a game that size. I was feeling a little mentally foggy but I thought I was functioning okay. I believed that until the hand I’ll describe next.
It was a big pot, where I was the aggressor in the hand, and where I was (so I thought) fully mentally focused the entire time. But somehow I did not notice a) that there was a flush draw on the flop, and b) that the flush draw completed on the river. Not seeing this caused me to a) bet small on the turn with trips in a big 3-way pot, and b) pay off a large bet from a very tight player on the river, not seeing anything logical that beat me.
If you play poker frequently at all, you’ll know this is disturbing; noticing the suits of community cards is one of the most fundamental aspects of poker. It’s as basic as breathing. And I was sitting right in front of the cards; they were easily visible. This was so disturbing to me not just because of this single hand, but because it called into question every previous hand I’d played in that session and my cognitive state outside of the game.
That incident scared me more than anything I’d ever experienced in my life. A bit of that might have to do with fear of insanity/mental incompetence being high for me as far as the greatest fears of my life. After that hand I didn’t play poker for a year and a half. Some similar incidents when driving also convinced me to avoid driving and other potentially dangerous things. And the other mental stuff got me to question and double-check anything mental-related I was working on.
The weirdness of the cognitive stuff was the strange “blind spots” of it. I could feel completely normal and all of a sudden realize there was something so blatantly obvious that I’d missed. I have quite a few stories from that time about it. It was scary.
Related to the malaise aspect of the disease; for most of my illness, I’ve been quite intolerant to alcohol. In the same way, when you are sick, you have no interest in alcohol; it seems horrible and poisonous. This was directly tied to my level of physical/mental malaise; it would be an accurate gauge of how miserable I felt physically/mentally to judge how disgusted I was with alcohol. When I was feeling decent, I could drink it. But even after the two-year mark, when I dramatically improved, I no longer enjoy it like I used to. My body has become sensitive to all things.
Learning about the disease
Over the first year, I saw several doctors, including a neurologist and an athletic performance lab. All tests looked normal. I researched things on my own, looking into a bunch of potential diseases it could be that might give normal results for common tests but lead to such symptoms. I considered a bunch of fairly rare diseases or improbable causes: Spinal Muscular Atrophy (which my cousin has), Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), Pompe Disease, a Chiari Malformation. The tests and doctors ruled these out.
I’d heard of CFS type diseases before, but I had never really believed in them. I’d always thought something like, “If such serious diseases were real and not just psychological, modern medical tests would show something wrong.” Looking back, I had a blind faith in how much modern science/medicine knew that was not based on any real-world experience. During the first year or so of my disease, it was hard for me to accept that I had CFS/ME, because I thought something like “There’s no way something this serious and debilitating could be CFS; it has to be something much more serious.”
About 14 months or so into the disease, I finally accepted that I had the condition called CFS/ME. As I saw more doctors and learned more about other people’s experiences with CFS, I realized that that was what I must have, as unsatisfying as it was. It was probably a year or so into it that a rheumatologist straightforwardly said that I had all the textbook symptoms of CFS/ME/Fibromyalgia (all the same mysterious condition in the opinion of many people, just different symptom definitions). When she told me that, I cried a bit in her office, because it was my first time accepting that I did have this mysterious, unexplainable, uncurable disease. Before that, doctors had mentioned it as a possibility, but nobody had put it in such blunt, certain terms.
At the time, I was so miserable, and things seemed so hopeless, that I would have preferred to have any disease, even a deadly one, as long as there was an answer. This is a common point of view for people with this condition, I’ve learned. But of course logically, I recognized that I was on the minor end of what this condition is possible of meting out; I was able to do activities, get around, and work on stuff. Around 25% of people with these conditions are bedbound or nearly bedbound. So as miserable as I’ve been, I also recognize that things can always get worse. Although when you’re suffering a lot and miserable and wonder how much longer you can live in such a state, such knowledge is cold comfort and not really something that gives you any peace of mind.
Improvement at the two-year mark
Apparently many CFS sufferers improve dramatically around the 2-3 year mark. I did not know this before my own improvement, but read it afterwards when I searched for people talking about it. I’d always heard that people have it for life, and that it doesn’t go away, but I hadn’t heard that many people get significantly better around then. Maybe the body is just getting used to whatever it is.
My own improvement came almost two years after I’d gotten it; in June of 2017. It was right after a several-month stretch of being at my most miserable; my days consisted of me dragging myself to work and coming home and lying in bed, feeling energyless and drained, existing in a mental fog of miserable malaise, and also not being able to sleep much despite feeling exhausted.
But then suddenly, for no apparent outside reason, things lifted. My muscle control improved significantly. I was less sensitive to pain. I could think more clearly again. The malaise lifted. I could drink alcohol again. I had an appetite again. I could exercise and run a bit without feeling like I was dying; instead of feeling like I had 10% energy/mojo, I had maybe 50%.
That last sentence is a good estimate for how much things have improved. I’m still far from feeling normal and good; I still have a lot of symptoms (all the ones I’ve mentioned, just much less extreme than they were at their peak). But it is a matter of degree that is much, much more bearable than things were at their nadir.
Things seemed so bad and hopeless at the beginning of the disease, before even my symptoms had gotten to their worse point. I’ve long been a regular runner, and I’d gotten back into shape in years preceding the disease; I had a bunch of physical activities I wanted to get into. I enjoyed climbing trees. I enjoyed reveling in a strength I hadn’t had since I was a kid. I wanted to climb rocks, do parkour-like stuff, do sky-diving. So when the disease first hit, I was very depressed and everything seemed much worse than it was. My physicality was something I had taken for granted my whole life.
But as the symptoms got worse, and I learned more about what other people went through with the disease, I accepted things more. I saw what the worst-case scenarios were, beyond my own worst-case scenarios. When it was at the worst point, where I didn’t know how I even got through the day, let alone couldn’t imagine getting through many more days, I lost the illusion that being very physical was important; I just wanted to feel normal and decent again. So when the symptoms lifted substantially at the 2-year mark, I felt surprisingly good mentally, despite being at a much lower point physically and symptoms-wise than I was in the first few months of the disease. What I’m trying to say is my expectations are lowered, and if I can feel decent mentally, without that crazy malaise, then I’m doing pretty well. I no longer have those initial feelings of great loss just for the physical stuff.
That’s pretty much it
That pretty much wraps it up. Again, this is kind of a synopsis. I have a much longer series of blog posts that go into a lot of my education and learning as I went along, as well as random, rambling thoughts on the condition. If you have CFS, you might find some of that interesting.
Love to hear from you if any of this is remotely similar to your experience. Or hear any thoughts/feedback on something I sound ignorant on. Or if you just want to tell me your story for sharing’s sake. I promise I will respond.