Ask HN: What has been your experience with chronic fatigue syndrome?
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.<p>I still have CFS, but mostly I don&#x27;t notice it, so long as I obey some rules it took me around a decade to learn.<p>A longer and more detailed account of it all follows.<p>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.<p>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.<p>I was a busy guy, and had been for a decade. I was prospering, but I was very tired and stressed.<p>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.<p>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.<p>We did allergy panels. The results were preposterous. The exact words of the person who called me with the results were that I was &quot;violently allergic to everything.&quot;<p>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.<p>It took two years and several doctors before one of them listened to my whole story and said, &quot;Hunh. Sounds like a textbook case of Chronic Fatigue Syndrome.&quot;<p>I went home and looked it up and, sure enough, Wikipedia&#x27;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.<p>(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&#x27;t know.)<p>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&#x27;t cure me, but he helped me reach a point where I could work again.<p>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.<p>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&#x27;t require me to be awake or upright.<p>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.<p>It was a two-steps-forward-one-step back kind of thing. CFS screws with your metabolism. You can&#x27;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.<p>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&#x2F;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.<p>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.<p>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.<p>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&#x27;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&#x27;m in my early sixties now.<p>Whatever.<p>CFS didn&#x27;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.<p>That RN I mentioned offered the advice that you won&#x27;t die from CFS, but you&#x27;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.<p>I hope you can do much the same thing.