Some words hang in the air when your doctor says them. Words like biopsy, fracture, or non-viable. Those words have meaning when you hear them. They take on a life of their own because you know the bad news is coming next. It’s like thunder and lightning, the flash that shocks you awake, then the punch in the gut.
Other words are just words though. They are not presences. They don’t hit you in the chest, they don’t take away your breath. They just wash over as part of everything else that is expected.
So when the dr. said Complex Regional Pain Syndrome today, it didn’t sound like much. I’ve had syndromes before, but they’ve cleared up. When you wash those words away and replace them with letters CRPS they lose even more of the weight they may deserve. Then the words got scrambled again by the Dr. coming out as Chronic Regional Pain Syndrome.
It’s been 12 hours since my teenage daughter got her diagnosis. It’s not confirmed yet though and we still need to rule some out some other things. But one thing has become absolutely clear: (Lesson 1) Medicine is an ongoing process to understand and help people. But CRPS is not yet clearly understood, which makes it difficult to help people.
So when the Dr. had some clues, but not clear answers, it was a little disconcerting. But that’s where we seem to be. And when I say “We”, I mean all of us. Everybody.
I’m not a doctor or an astronaut, so I’m not going to pull a Mark Watney and “Science the shit of out this.” But what I can do is internet the shit out of this and guide you through everything that’s out there. Why makes me qualified to be your guide? Don’t worry, I’m not qualified. I’m just trying to leave breadcrumbs for myself and maybe somebody else will find them too.
(Lesson 2) Google is your friend. Instagram is your enemy.
Instagram will only show you the worst outcomes. Example: https://www.instagram.com/thegoodleg/ https://www.instagram.com/burningnightscrps/ the people who’s lives have been fundamentally altered by CRPS. What you won’t easily find there are the people who recovered and now manage a chronic condition. Don’t start with anything on Instagram. That will come in time. Today is not that day.
Reddit is… https://www.reddit.com/r/CRPS/ well I don’t know yet. Gotta check it out.
(Lesson 3) In early days, move quickly: Synthesized from links below.
- Start Gabapentin
- Take vitamin C
- Get a unicorn physical therapist lined up quickly
This is the first day, so here is scattershot capture of what I’ve found useful, or what to look into some more:
Good background (warning: containts dr. talk) on what your dr. doesn’t completely understand: https://player.fm/series/the-pmr-podcast/episode-18-complex-regional-pain-syndrome
FAQs & Background:
Things to learn about more tomorrow:
Good company in a journey makes the way seem shorter. — Izaak Walton