5:04am December 28, 2012

➸ Bowsher's Criteria: The Diagnosis of Central Pain

Again, without my DPA reading this and knowing me really well I’d never have been diagnosed. This article too describes many reasons people with central pain have trouble describing it to doctors.

Our current guess, based on testing done of my mother, is that I have some kind of hereditary small fiber sensory neuropathy causing these symptoms. Everything I have ever heard about central pain applies to what I have. Except that since I got it so young, I grew up with no frame of reference until some of my epilepsy meds began to reduce the pain. It sounds like people who get it as adults have the same problem though because they rapidly forget what normal felt like.

I’m posting this stuff because if anyone else with chronic pain recognizes these descriptions, it can completely change which medications and other treatments you need to try to get rid of it.

For me, it always felt like someone had taken my skin, burned it, and then rubbed it with sandpaper, except that sometimes instead of burning hot it burned cold, like I imagine liquid nitrogen must feel. And it would spread around areas that were already in pain, so instead of heartburn, I’d get the feeling that someone was pressing a huge sheet of impossibly cold metal over my whole back.

I’d forgotten about this website before my DPA reminded me that when I made that long post about the aftermath of pain, there was no aftermath, I was still in pain but didn’t realize it. And these articles explain how someone can be at 8 on the pain scale and not know it’s pain, describing only effects on functioning, not sensations.

And even knowing that. I still do it all the time. It’s one of many reasons I have three friends who can often tell I’m in severe pain before I notice.

Including my DPA, who helped get me diagnosed and treated after reading these articles. If they sound like you or someone you know, read through the rest of the site, print stuff out, and talk to a doctor if you have one you can trust. You have to go through the Internet Archive as the site no longer exists, because it’s well worth it.

I know it sounds weird but reading this stuff somehow helped me remember I’m still part of humanity. It had gotten so bad I spent all day curled in a ball moaning, yet I didn’t know it was pain. The story of my life, I swear, even with much more normal forms of pain. (I have several conditions that cause pain, they overlap and cause my body to declare war on me.)