The book at right is very good so far. I bought it curled up in bed that second night in Palo Alto, after my Stanford doc told me that I had Chronic Fatigue Syndrome, not Fibromyalgia. We went back to our lodgings to rest (I’d walked 12k steps that day, a huge mistake I would pay for later), and I figured I ought to download a book and start reading about this new thing-that-isn’t-Fibro.
It’s well-written, chock full of research and studies, but it doesn’t bog you down. Topics are tightly organized and it’s easy to find what you’re looking for (the editors obviously recognize that their audience could be suffering from brain fog and general fatigue).
Today I choked on my granola when I read this description of a “sensory storm”:
Dr. Luis Leon-Sotomayor, the cardiologist who documented the 1965 CFS/ME epidemic in Galveston, Texas, described a type of neurological dysfunction that he called a “sensory storm.” These storms affect the autonomic nervous system, which is regulated by the hypothalamus.
A person experiencing a storm may first see an aura, or sense that something very bad is about to happen. Sensory storms produce sweating, pallor or flushing, elevated blood pressure, slowed respiratory rate, tachycardia, dizziness, and the feeling that one is about to lose consciousness. These storms are terrifying, but the effects generally pass within an hour. After such an experience, a person may feel lingering tiredness or malaise.
I’ve been having these for years. Exactly as described. They are really scary. Mine have gone on for closer to two hours, rarely edging into three. When I try to explain to them to ER doctors, they say it’s just a weird sort of panic attack and just call the nurse to stick more Ativan in my IV line. It was shocking to read this and to suddenly have a name for what I experience as “those other attacks” or “those shaky episodes”. People have actually studied this! This experience is actually visible to someone as a real thing that is happening. So much of what I experience in my body is invisible, everyone just says it’s from being tired, or it’s some panic attack variation.
Knowing that what I have is actually Chronic Fatigue Syndrome is helping me a lot to make sense of the last decade.