5 ms·
I was diagnosed with Chronic Fatigue Syndrome in the fall of 2006. Its impact on my life was fairly catastrophic, but everything is much better now. I still ha
by mikelevins 4y ago
I was diagnosed with Chronic Fatigue Syndrome in the fall of 2006. Its impact on my life was fairly catastrophic, but everything is much better now.
I still have CFS, but mostly I don't notice it, so long as I obey some rules it took me around a decade to learn.
A longer and more detailed account of it all follows.
The trouble began in the fall of 2004. At that time I was prosperous and had a generally good life, but it was stressful and hectic, and had been for about a decade.
I worked long hours for a successful startup. I had two teenage children. I owned a business on the side teaching people Chinese martial arts and serving as a Bay Area contact for a well-known Chinese martial arts teacher.
I was a busy guy, and had been for a decade. I was prospering, but I was very tired and stressed.
In the fall I developed what I thought was a cold or the flu. Week after week went by and it only kept getting worse. By Christmas I was sleeping eighteen hours a day or more.
My doctor had no idea what it was. She scheduled every test she could think of. I was tested for things that were extraordinarily unlikely (tuberculosis, AIDS, et. al.) given my circumstances, just because the Doc ran out of ideas.
We did allergy panels. The results were preposterous. The exact words of the person who called me with the results were that I was "violently allergic to everything."
The startup hung on for over six months, paying my full salary in return for no work. In the end, though, they had to pull the plug. I have no hard feelings. They were good to me.
It took two years and several doctors before one of them listened to my whole story and said, "Hunh. Sounds like a textbook case of Chronic Fatigue Syndrome."
I went home and looked it up and, sure enough, Wikipedia's description of a typical case could have been exactly the sstory I told my doctor. Both I and my doctor wondered why no previous doctor had proposed that diagnosis before.
(Later, though, I heard from a friend of a friend who was an RN, and who had some relevant experience. She said that physicians were generally reluctant to diagnose CFS because it was a controversial diagnosis and it was hard to get insurance companies to cover anything for it. That was circa 2006; perhaps the situation is better now; I don't know.)
The new doctor proposed some short-term things to try to get me to a point where I could stay awake and alert more than a few hours a day, and some longer-term things to try to reach some sort of stable accommodation. Things got better right away. He didn't cure me, but he helped me reach a point where I could work again.
Over the ensuing sixteen years the same doctor and I have rebuilt my life. We started with steroids and CNS stimulants, which helped me re-establish a baseline level of wakefulness for some kind of a workday.
For the couple years that I was sleeping all day every day, my general condition deteriorated rapidly, and my diet suffered considerably--partly because I just ate anything I could get my hands on that didn't require me to be awake or upright.
So I started working on my diet. I also began to exercise again--carefully. I had been an exercise nut, often working out at the martial arts school for twenty hours a week or more, on top of fairly grueling work schedules. That all went out the window when I got sick. Now I started to try to build it back.
It was a two-steps-forward-one-step back kind of thing. CFS screws with your metabolism. You can't recover normally from fatigue (which is where the name comes from). I had to gradually learn how to tell when I was exercising appropriately, versus when I was exceeding a boundary that was going to put me flat on my back with intense vertigo for several days.
We tried several drugs to combat the intense sleepiness. Modafinil and armodafinil did the trick for me. They enabled me to stay awake for a stable fraction of the day. I got my sleep cycle under control after about ten years of struggling with non-24 sleep/wake syndrome. I experimented with various approaches to exercise. Plain old walking ended up doing the trick. It worked much better after I got a standard poodle who would bug me to go for long walks several times a day.
Slowly, slowly, I got my weight back to normal, my body fat back where it belongs, my general condition into good shape, my nutrition healthy, and most of my blood tests good.
Annoyingly, I developed type II diabetes during the worst nadir of my physical condition, but in the course of learning to manage everything else, I got that well under control as well.
My life is very good now, and it has been for a number of years. I still have diabetes and CFS, but if I obey the rules of behavior that I have painstakingly discovered over the years, I don't really notice either one much. Well, I do seem to need at least one short nap most days, but that could be because I'm in my early sixties now.
Whatever.
CFS didn't kill me. It briefly made me think I was dying, and then briefly made me want to die. It was a decade-long struggle learning to adapt to it, but I did.
That RN I mentioned offered the advice that you won't die from CFS, but you'll die with it. My eventual response was to accept that it was now a permanent part of my life, and then to work on finding out what kind of life it could be. I did that, too. In most ways, my life is now better than it ever was.
I hope you can do much the same thing.