A Sudden Illness (2003)
I developed CFS in late 2004. I was diagnosed in 2006.<p>My doctors were initially no help. My primary care physician ran battery after battery of blood tests. She loved blood tests. Her nurses called her &quot;Doctor Dracula&quot;. I learned that I didn&#x27;t have AIDS or tuberculosis or any of a long list of other illnesses. I also learned that I was, in her words, &quot;violently allergic to absolutely everything.&quot;<p>I couldn&#x27;t work anymore. Pretty much all I could do was sleep, eat, and go to the bathroom. When I couldn&#x27;t sleep anymore, I played games in bed.<p>I lost my (very good, very satisfying, very lucrative) job. I lost my savings. I lost my home. Friends and family took me in.<p>I saw various doctors. They were no help until I saw a guy in northwest Arkansas. He was different from the others: he actually listened to what I said. After I described the onset of my illness, he said, &quot;that sounds like a textbook case of CFS. Let&#x27;s try something.&quot;<p>He tried a steroid injection. He said it would temporarily counteract the systemic inflammation he was seeing. Suddenly I felt great. That lasted a few days.<p>He prescribed modafinil, a drug that promotes alertness. Modafinil worked great, too. It enabled me to stay awake longer than an hour or two at a time, and gave me back my memory and about thirty IQ points. I could work again.<p>Every few weeks the modafinil would stop working for a couple of days, and I would be back in sleep-all-day mode. The doc tried an amphetamine. Before the illness I was hypersensitive to stimulants. A canof coke too late in the evening and I&#x27;d be unable to sleep. Now, though, I could take an amphetamine and go right to sleep.<p>Twelve years later I don&#x27;t need stimulant drugs anymore. I&#x27;m much better. I won&#x27;t go so far as to say that I&#x27;m recovered--there are still things I can&#x27;t do--but my life is mostly normal and even comfortable now, so long as I obey some rules that I gradually discovered by trial and error.<p>It&#x27;s important to get enough sleep, and to try to get it at roughly the same time every day. It&#x27;s important to eat in a healthy way. It&#x27;s important to have a steady routine that stays pretty much the same from day to day. It&#x27;s important to monitor levels of activity, both mental and physical. I need to be active, but I need to avoid exceeding some limits.<p>It&#x27;s very important to get some exercise, but I have to control the amount and intensity of it carefully.<p>If I don&#x27;t get any exercise, it&#x27;s bad for the same reasons that&#x27;s bad for anyone. If I get too much all at once, it&#x27;s bad for different reasons. It puts me back into useless lying-in-bed mode.<p>CFS causes an unusual response to fatigue--namely, you get fatigued and then don&#x27;t recover from it. (Maybe it&#x27;s related to abnormalities in energy metabolism. If you google for some combination of terms like &quot;cfs&quot; and &quot;calcium&quot; and &quot;metabolism&quot;, you&#x27;ll get references to a bunch of research about abnormalities in several metabolic pathways in CFS sufferers.)<p>If you&#x27;re a normal person and you run hard around the block, you&#x27;ll get back and rest and breathe hard, and you&#x27;ll be back to normal in a few minutes. If I do that--If I could do it without collapsing partway through--I&#x27;d rest and breathe hard and be back to normal in a few days to a week or so.<p>The best exercise for me is walking. I built up my stamina slowly and gradually, and now I walk between three and five miles every day, in sessions of about fifteen or twenty minutes at a time. For a while I tried biking, but biking seems to tempt me to exert too hard, and if I exert too hard I&#x27;m flat on my back again.<p>I&#x27;ve learned to recognize when I&#x27;m pushing too hard. There are some distinctive sensations. I feel dizzy, and a sensation that feels like I&#x27;m falling. I lose coordination and ability to focus. The more intense I let it get, the longer it takes to abate.<p>If I avoid those sensations, I feel pretty good, pretty normal. After years of experimenting, the boundaries have become habit, and I rarely feel those sensations anymore unless something unusual tempts me out of bounds.<p>I don&#x27;t know that what works for me will work for anyone else, but <i>something</i> worked for me. Maybe something will work for others, too. Maybe it will be helpful to know that it sometimes gets better for some people.<p>There&#x27;s a lot of skepticism about CFS. People seem to be quick to jump to the assumption that it&#x27;s psychosomatic, but it probably isn&#x27;t. You can google around and satisfy yourself that evidence exists that it&#x27;s organic. The trouble is that there&#x27;s still no consensus about what exactly it is, or what causes it.Some say it&#x27;s a viral illness. Some say it&#x27;s an autoimmune disease. Some say it&#x27;s a genetic defect. Some say it&#x27;s all of those--for example, a genetically-caused autoimmune syndrome with a viral trigger.<p>All these unknown mean that we don&#x27;t even have a very good name for it. &quot;Chronic fatigue syndrome&quot; only sort of describes part of the symptoms. &quot;Myalgic encephalomyelitis&quot; seems sort of speculative. Yeah, there are some muscle aches, and some inflammation, but do we really know that it&#x27;s inflammation of the myelin in your head? I dunno.<p>Apparently we do know that CFS sufferers have abnormal energy metabolism, and anomalies in several metabolic pathways.