I developed CFS in late 2004. I was diagnosed in 2006.
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 "Doctor Dracula". I learned that I didn't have AIDS or tuberculosis or any of a long list of other illnesses. I also learned that I was, in her words, "violently allergic to absolutely everything."
I couldn't work anymore. Pretty much all I could do was sleep, eat, and go to the bathroom. When I couldn't sleep anymore, I played games in bed.
I lost my (very good, very satisfying, very lucrative) job. I lost my savings. I lost my home. Friends and family took me in.
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, "that sounds like a textbook case of CFS. Let's try something."
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.
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.
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'd be unable to sleep. Now, though, I could take an amphetamine and go right to sleep.
Twelve years later I don't need stimulant drugs anymore. I'm much better. I won't go so far as to say that I'm recovered--there are still things I can'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.
It's important to get enough sleep, and to try to get it at roughly the same time every day. It's important to eat in a healthy way. It's important to have a steady routine that stays pretty much the same from day to day. It's important to monitor levels of activity, both mental and physical. I need to be active, but I need to avoid exceeding some limits.
It's very important to get some exercise, but I have to control the amount and intensity of it carefully.
If I don't get any exercise, it's bad for the same reasons that's bad for anyone. If I get too much all at once, it's bad for different reasons. It puts me back into useless lying-in-bed mode.
CFS causes an unusual response to fatigue--namely, you get fatigued and then don't recover from it. (Maybe it's related to abnormalities in energy metabolism. If you google for some combination of terms like "cfs" and "calcium" and "metabolism", you'll get references to a bunch of research about abnormalities in several metabolic pathways in CFS sufferers.)
If you're a normal person and you run hard around the block, you'll get back and rest and breathe hard, and you'll be back to normal in a few minutes. If I do that--If I could do it without collapsing partway through--I'd rest and breathe hard and be back to normal in a few days to a week or so.
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'm flat on my back again.
I've learned to recognize when I'm pushing too hard. There are some distinctive sensations. I feel dizzy, and a sensation that feels like I'm falling. I lose coordination and ability to focus. The more intense I let it get, the longer it takes to abate.
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.
I don't know that what works for me will work for anyone else, but something 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.
There's a lot of skepticism about CFS. People seem to be quick to jump to the assumption that it's psychosomatic, but it probably isn't. You can google around and satisfy yourself that evidence exists that it's organic. The trouble is that there's still no consensus about what exactly it is, or what causes it.Some say it's a viral illness. Some say it's an autoimmune disease. Some say it's a genetic defect. Some say it's all of those--for example, a genetically-caused autoimmune syndrome with a viral trigger.
All these unknown mean that we don't even have a very good name for it. "Chronic fatigue syndrome" only sort of describes part of the symptoms. "Myalgic encephalomyelitis" seems sort of speculative. Yeah, there are some muscle aches, and some inflammation, but do we really know that it's inflammation of the myelin in your head? I dunno.
Apparently we do know that CFS sufferers have abnormal energy metabolism, and anomalies in several metabolic pathways.
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 "Doctor Dracula". I learned that I didn't have AIDS or tuberculosis or any of a long list of other illnesses. I also learned that I was, in her words, "violently allergic to absolutely everything."
I couldn't work anymore. Pretty much all I could do was sleep, eat, and go to the bathroom. When I couldn't sleep anymore, I played games in bed.
I lost my (very good, very satisfying, very lucrative) job. I lost my savings. I lost my home. Friends and family took me in.
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, "that sounds like a textbook case of CFS. Let's try something."
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.
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.
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'd be unable to sleep. Now, though, I could take an amphetamine and go right to sleep.
Twelve years later I don't need stimulant drugs anymore. I'm much better. I won't go so far as to say that I'm recovered--there are still things I can'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.
It's important to get enough sleep, and to try to get it at roughly the same time every day. It's important to eat in a healthy way. It's important to have a steady routine that stays pretty much the same from day to day. It's important to monitor levels of activity, both mental and physical. I need to be active, but I need to avoid exceeding some limits.
It's very important to get some exercise, but I have to control the amount and intensity of it carefully.
If I don't get any exercise, it's bad for the same reasons that's bad for anyone. If I get too much all at once, it's bad for different reasons. It puts me back into useless lying-in-bed mode.
CFS causes an unusual response to fatigue--namely, you get fatigued and then don't recover from it. (Maybe it's related to abnormalities in energy metabolism. If you google for some combination of terms like "cfs" and "calcium" and "metabolism", you'll get references to a bunch of research about abnormalities in several metabolic pathways in CFS sufferers.)
If you're a normal person and you run hard around the block, you'll get back and rest and breathe hard, and you'll be back to normal in a few minutes. If I do that--If I could do it without collapsing partway through--I'd rest and breathe hard and be back to normal in a few days to a week or so.
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'm flat on my back again.
I've learned to recognize when I'm pushing too hard. There are some distinctive sensations. I feel dizzy, and a sensation that feels like I'm falling. I lose coordination and ability to focus. The more intense I let it get, the longer it takes to abate.
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.
I don't know that what works for me will work for anyone else, but something 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.
There's a lot of skepticism about CFS. People seem to be quick to jump to the assumption that it's psychosomatic, but it probably isn't. You can google around and satisfy yourself that evidence exists that it's organic. The trouble is that there's still no consensus about what exactly it is, or what causes it.Some say it's a viral illness. Some say it's an autoimmune disease. Some say it's a genetic defect. Some say it's all of those--for example, a genetically-caused autoimmune syndrome with a viral trigger.
All these unknown mean that we don't even have a very good name for it. "Chronic fatigue syndrome" only sort of describes part of the symptoms. "Myalgic encephalomyelitis" seems sort of speculative. Yeah, there are some muscle aches, and some inflammation, but do we really know that it's inflammation of the myelin in your head? I dunno.
Apparently we do know that CFS sufferers have abnormal energy metabolism, and anomalies in several metabolic pathways.