How to run with RSD/CRPS

As you probably know by now, I have RSD in my right leg. At least, that's what it was called when I was diagnosed in 2000. Now it's CRPS or RSDS. (Read more here or here, or if you're into the scary stuff, do a Google image search. My mom actually blocked internet searches on the subject when I was first diagnosed because there is some scary stuff out there. My leg looks relatively normal most of the time, thankfully.)

And as you probably also know by now, I run the Muddy Buddy every spring in Richmond (see here and here-- this was actually my fifth one though!).

This year was more nerve-wracking (so punny) than past years because 1. I'm now a year and a half out from my last treatment, as I've been without health insurance that long, so I went into the race in poor condition, and 2. I watched a girl break her ankle on one of the obstacles first thing in the morning and had to think/worry about that all day, until I actually finished the race in one piece.

So, I was entirely too focused on the dull but ongoing pain that I usually ignore. My toes felt like they were in a vice. My heel felt like it was so cold, it was burning. My ankle felt like it was on fire. My calf felt like it had several knives lodged in it, and my shin felt like it was going to explode. My knee felt all kinds of loosey goosey.

My left hip ached because I've been walking and running funny for weeks, compensating for this nonsense.

My quad felt like you would expect a thigh to feel after getting on a bike and riding quickly up and down hills after not riding a bike since the last Muddy Buddy, but at least my quads were in this together.

This is a real, physical disorder. It's not psychological, but stress definitely makes it worse. And man, I was stressed. I was pretty sure I was going to die and/or break my leg on that obstacle at the end. I fell on it last year and bruised my forearms. The thing about why I keep exercising, why I keep doing anything, is because I can't let my leg win. It's just a stupid drama queen. My pain doctor gave me the go ahead years ago to stay active and push myself. The pain isn't really causing any damage (unless I'm actually causing damage, which sounds stupid but you know what I mean), so as long as I can tolerate it, which I mostly can, I can keep going. So: Muddy Buddy 2013.

Aside from the panic brought on by watching that ankle snap so early in the day, it was a great day and I had a blast. We finished the course in a little over an hour, and I don't even care if you aren't impressed, because I FINISHED THE COURSE, and that is all I care about. (1'11" is a lot less impressive when you realize that half of it was on bike, but I deserve some credit back for all of the freaking obstacles along the way, and the creek crossing, and the mud pit at the end.)

One of the best/more embarrassing moments of the race: at mile 1, I came upon a woman having an asthma attack. A friend was with her, and she had her inhaler, and they insisted she was ok, so I gave her my water and continued on. She passed me at mile 3. (I later passed them both again, and when I was limping along at mile 5, they passed me and offered help, but I encouraged them to go finish strong because there wasn't anything to help.) I was actually really glad to see her at mile 3, and know she recovered and eventually finished. It's a very positive, fun race. We want to see everyone finish ok.

And finish ok we did. We had about five minutes before running the Mini Muddy Buddy with my buddy's kids, so mud pit round 2. The mud pit is the whole point for me though, so that was pretty awesome.

Anyway, how do you do a Muddy Buddy, or running at all, with RSD in your leg?

SLOWLY.

But the point is, you do it. I also have these other helpful tips:

1. Skip one of your main triggers, the weather, by spending winter in a desert. Specifically, the Mojave Desert, not Antarctica. This was a huge luxury for me this year. I realize this is not especially practical, but the basic idea here is, find superficial solutions. Which leads me to number 2:

2. Maintain a good relationship with someone who is always warm and doesn't mind you sticking your cold foot on them every chance you get. Thanks, Mike.

3. Make sure you like your doctor and your treatment. One of my favorite professors once accidentally turned her lecture into an important life lesson about not just settling for any old doctor or treatment plan, but seeking out something you are comfortable with. I have been under the care of the same pain doctor for all 12.5 years of this diagnosis, and my visits with him are extremely efficient and effective. We came up with a long-term plan before my insurance ran out, and he was very supportive of me starting that regimen on my terms this month (and at a very steep discount, no less!).

4. Low impact exercise. This year, this meant not really training at all? I hiked and walked a lot. Surely that counts.

5. Maintain a race partner who is not competitive. Brian Campos, you are the best. He doesn't ever seem to care about our time, as long as we finish. We always do. His encouragement after the fourth obstacle, when I was really starting to fret about breaking my ankle at the final obstacle, and his promise to make sure I made it over the wall before he attempted it, basically carried me through the last legs of the race. This tip is also related to number 6--

6. Less stress. This is the one I've been struggling with lately. There was the stress of getting myself all sorts of lost in being unemployed, and then there was the stress of realizing the nerve problems were creeping up on me despite my best efforts, and then there has been the resurgence of many of my high school concerns. While this is not a psychological disorder, as I mentioned, I have big fears of people assuming/treating me like I'm crazy, because some days I limp, and some days I don't. My pain doctor focused on this one when I saw him a few weeks ago. I just need to let it go. I'm great at handling my own worries about it, I'm not so great at handling the worrying about other people's worries about it. Don't worry, I'm fine. And don't assume I'm crazy or faking it. The only faking I'm doing, is fake it till I make it. If I ignore it, it's not as bad.

7. Get health insurance. Check! Coming soon to a Colleen near you! (And I will seriously write more about this soon!)

8. Honesty. This should probably actually be item 6b. Honestly: this thing is getting to me. I'm struggling with it. At this point, it's persistent. I have returned to my old friend Tramadol in lieu of a nerve block until I have health insurance again (and I returned after the race instead of before, because I wasn't ready to deal with the side effects-laden transition into a regular dosage, and I also don't know how this works for me if I have a beer, and I wanted to enjoy the beer garden at the end of the Muddy Buddy, sorry not sorry, Devil's Backbone and being coherent afterwards turned out to be totally worth it).




Moral of the story is: life goes on, as well it should.
tl;dr-- RSD is stupid but I win anyway.