A Sudden Illness (2003)

In case you missed it, there is another good post on HN right now about Chronic Fatigue Syndrome

https://news.ycombinator.com/item?id=18321537

Earlier this year I was diagnosed with Epstein Barr Virus which then became Post Viral Fatigue (PVT). PVT is basically Chronic Fatigue Syndrome except the symptoms are new and as a result of a viral infection. If you're still suffering 6+ months later the diagnosis becomes Chronic Fatigue.

It was a nightmare. I went from an athlete training 14+ hours per week to a bed bound individual. There was a period of 3 months where all I did was work and sleep. My children, who normally eat healthy, were getting nuggets and chips for dinner nightly as I was too exhausted to cook and would just buy them take away. I would buy them dinner, out on a movie and tell them to wake daddy when it finishes. I personally gained around 9-10kg over 5 months due to not cooking and not moving.

I'm at the 8 month mark now and I'm very close to being 100% better. I'll be back training 7 hours per week this week, I've started losing the weight I gained, and I'm not spending all my free time sleeping.

The worst part of the experience is the doctors not having much of an understanding of the disease. Being told "you should be better in 12 months but it might last year's" is a horrible thing to hear when the disease is making your life fall apart. The only positive is that I've had every blood test you can think of, most tests twice, and I'm a bill of health.

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.

This article is from 2003, and Laura has improved quite a bit since then:

"I began to try to inure myself by getting in a car and riding for five minutes. It would be awful and I would feel terrible. I was so dizzy for an hour afterward, but I just wanted to see: If I keep doing this, can I teach my brain how to tolerate it? I’d go a little longer and a little longer. And over two years, I went from being just miserably dizzy after five minutes to being able to go two hours."

http://stanmed.stanford.edu/2016summer/leaving-frailty-behin...

Oh my God. I have been out of it for ten years. I got a seriously nasty flu in 2004 and never recovered. Lack of sleep, trying to work 40-50 hours per week with two babies at home to care for...

I lasted not quite 2 years then had to go on medical leave. I had amazing support from employer, my supervisor, and insurance. It took another 2 years of tests, then qualified to receive long-term pension.

Today is a particularly painful day. They call it ME/CFS and PVT.

Some people seem to get over this, within a year or two. One person I have met was crashed out for 20 years but claims to have recovered.

I used to have days that almost felt like normal, just enough to convince me that this is really tough and I am not imagining things.

There are days where I can barely walk. Most days are not quite that bad.

I have seen many medical centers, I have seen people who cannot get the 4-5 years of total support needed to either find effective treatment or to qualify for disability-insurance income. I have seen people who lose everything.

I can walk and talk and see my kids grow into awesome people. In a good neighborhood, great schools, a fantastic landlord. Lots of folks don't get that chance.

I got a bad flu (or similar) in 2001 and never recovered fully. It was like half my energy capacity went permanently missing. I had been quite active and athletic, but that all ended. I did as much as I could, and, despite needing to drop out of school, managed all right for nearly a decade, although I would burn out every few months if I tried to accomplish anything. In 2012 I got a nasty tooth and sinus infection that laid me out completely. I spent all my energy for the next few years trying to get to the bottom of my issue through a bunch of doctors and tons of tests, and came out the other side with the "non-diagnosis" of chronic fatigue syndrome.

I always knew CFS fit my condition, but ignored it because there was no cure or effective treatment. But once I started to look more closely at it, I discovered some useful community wisdom out there: The crippling symptoms are mainly triggered by overexertion, and can often be managed by lots of rest and very strict pacing at all times. Since that discovery, my life has become extremely boring in many ways, but the worst of the symptoms -- crushing depression, pain, restlessness, brain fog, dizziness, and many others -- have largely abated. I can do a few things if I'm careful. There is some promising research ongoing, although not nearly enough, and I'm hoping that I don't have to spend the rest of my life on the couch.

What an incredible read.

This article somewhat reminds me of my struggles with LPR: the sudden onset, the myriad of symptoms all pointing in different directions, the intense, daily stress that keeps you from thinking about anything else (is it cancer? am I getting worse?), the dreams of death, the endless and fruitless search for answers, the lack of a cure and the community of sufferers who all seem to have their own rituals and fixes, the way the disease seems to work in cycles, the seemingly half-physical, half-psychological nature of it all.

Laura’s experience is way, way worse that mine, but it’s still quite scary that the body can just break for no good reason.

Has anyone tried BHT for EBV/CFS? It is active against lipid containing viruses like EBV:

https://en.wikipedia.org/wiki/Butylated_hydroxytoluene#Healt...

I used to think medicine was about science and then quickly realized it about engineering with respect to the body. I was thinking of attending medical school but am glad I chose the route to get a Phd in EE instead. It seems much more science and discovery focused instead.

I picked it up in 2004 and never fully recovered. Interesting that there are multiple comments in this thread were people had a similar experience from 2001-2004.