It doesn't rain but it pours....

With CFS comes a cascade of other problems.

I’ll admit that my sinus headaches started in college. But those were different. They hurt, but they were not blinding, and they were never accompanied by infections. I might use them as an excuse to cut a class I didn’t enjoy, but they didn’t prevent me from doing the things I loved.

After CFS, I went from having pain around my eye socket a few days a year to having pain in my face and scalp dozens of days, sometimes blinding, sometimes on the level of a migraine, requiring me to lie absolutely still in a dark room. (One such day, my friend Peter called to cheer me up and I had to ask him to please not make me laugh, because the vibration even from a light giggle was head-splitting.) I also started having sinus infections rather than just headaches – something that was explained when I learned that CFS damages the immune system. My weakened immune system couldn’t prevent the infection the way it used to.

Soon after the CFS, I began to have problems with wrist tendinitis. Initially, it was assumed to be a result of years of production typing, but then I learned that CFS causes joint and muscle pain.

I also developed digestive problems – first thing in the morning, every single day. For a couple weeks, we thought this was morning sickness, but then came the incontrovertible indication that I wasn’t pregnant, and the problem continued. Again, eventually I learned this is common with CFS: CFS affects many bodily functions because it affects the Central Nervous System. When wrong nerve impulses are sent to the digestive tract, interesting things happen.

I started to fall while walking (tripping over a crack in the sidewalk is different from collapsing from exhaustion after doing a little too much) and to faint without warning – more neurological problems.

In December 1987, I couldn’t make sense of what I was reading, or remember things, or tell time, or do simple math, or find the right word when speaking. I was sure I’d just become world’s youngest Alzheimer’s victim (though I’d never heard of someone going from above-normal to advanced dementia in a matter of months, but if I was going to set records for age I might as well set records for speed, too), until I learned this was just another symptom: the virus that causes CFS also causes lesions in the brain, and Dr. Sheila Bastien has developed a neuropsychological "signature" for CFS that verifies that some partsremain untouched and other functions (like math and memory) are "worse than patients with traumatic brain injury". Apparently thanks to my age and gender, I did eventually recover most of that function, only to lose it again when I relapsed in 2000. At this point, at peak efficiency, I can pass for normal for a couple hours, but I can’t sustain peak efficiency for an 8 hour work day, not even with a long nap in the middle.

At first, some doctors mocked CFS as beyond credibility because patients complained of "every symptom under the sun", but then a neurologist clarified that every symptom on the list could be caused by Central Nervous System dysfunction. (As one of my teachers warned us, "a little learning is a dangerous thing", and never more so than when it’s a generalist who scoffs at something without consulting a specialist who knows that it’s not as bizarre as it sounds.)  If it were truly imaginary, some of those patients would be slipping in symptoms that aren't neurological in nature, but the symptom list remains consistent.

Quite early on, Dr. David Bell observed that whatever the cause of CFS might be, it was something that affected every organ without causing organ damage; and certainly the nerves touch every inch of the body. If you’re just feeling around looking for a swollen liver or enlarged spleen, you aren’t going to be able to feel a nerve dysfunction. But most doctors don’t think to do a nerve conduction study on someone who has digestive problems: it’s easier (and cheaper) to pin the blame on their diet or their stress level.

 

 

 

Tags: CFS,