Open-sourcing my (literal) Pain In The Butt

Update 2015-11-06.

Imagine you have a painful medical condition, and the doctors aren’t able to help you. What do you do?

This is the situation I find myself in. Since March, I have been in almost-constant pain, deep inside my butt, and down my leg. I have seen close to a dozen doctors, physical therapists, massage therapists and chiropractors, have done so many MRIs, tests and various treatments, but there is little improvement. The only thing that works, fortunately, are the pain killers. I currently have no reason to believe that if I see another dozen-plus doctors, they will be any smarter and their answers any better.

Spending just 10 minutes on Google, you can find many others who have the same Pain In The Butt, and most haven’t been helped by their doctors either. It affects young and old, active people and couch potatoes. So “Piriformis Syndrome“, as the condition is called, is not rare at all, even if much of the medical establishment, for whatever reason, does not want to acknowledge that it exists. (Well, dear medical establishment, would you like to trade butts? I think you’d change your mind rather quickly.)

So I decided to do an experiment, and I need your help: it only works if many people who have the same condition participate, so please share, tweet, e-mail … Know anybody who does not like to sit down for long? Nobody with Piriformis Syndrom ever, ever, wants to sit down. Tell them, please!

Know the old open-source saying?

Given enough eyeballs, all bugs are shallow.

I’d like to think this could apply to health problems, too, like this:

Given enough smart people in pain, all conditions can be healed.

So I started a Wiki at openpiriformis.org, where so far, I have collected some links to some relevant articles and videos, personal observations, and wild theories on my very own Pain In The Butt. I hope that others with the same condition could read it over, agree or disagree, and add their own observations, facts and wild theories. Perhaps together we can even come up with some systematic testing, like:

• comparison of the nature of pain (when, where, correlated with what, …)
• exercises and their impact (or lack thereof)
• massage techniques, chiropractic interventions etc. and their results
• etc. etc.

And because wikis aren’t so great for arguing, I also created a sub-Reddit (/r/openpiriformis) that is intended for discussion and quick-and-easy link sharing.

It’s not clear to me that the National Institute of Health has to fund a dozen million-dollar studies on Piriformis Syndrome before we can all get better (not that they are about to do that, but it seems to be the usual way medicine progresses forward). Instead I believe that, say, a few dozen smart and motivated people may very well be able to accomplish the same, or more. I sure am motivated, and I bet others with a butt like mine are too! After all, decentralized collaboration by motivated individuals works so brilliantly to produce world-class open-source software; something few people would have considered possible just a generation ago. Why not world-class approaches to healing pain?

Let’s bring open-source-style problem solving to healthcare, and fix our pain ourselves if the doctors are no help.

Can you help by spreading the word?