My little cycling buddy, Max, has been helping me raise awareness of a relatively rare neuro-inflammatory disease. It’s called Complex Regional Pain Syndrome, or CRPS for short. Its former name is still often used, too; Reflex Sympathetic Dystrophy, or RSD.
Very few people, other than the physicians and other healthcare professionals who work with chronic pain patients, have heard of CRPS. This condition is so little known that it doesn’t even have an official awareness day, here in Canada!
CRPS does have a disease awareness colour, though, thanks to some international patient organizations. That colour is orange; the same shade as a flame, of fire. And a flame is the most common symbol, or logo, for these different awareness groups, around the world.
That’s because CRPS usually starts with an excruciating burning pain, in an extremity. It starts in the fingers or toes and can then spread up the limb, following the nerves. To the entire arm or leg, to another arm or leg, to all of them. In rare cases, to the internal organs.
The flame symbolizes the feeling of CRPS. In my case, it first felt as though someone was holding a blowtorch to my fingertips. There were many nights when I got out of bed and turned on a light, convinced that my fingers must be blistering somehow from that burning heat!
Now, about Max. Who is he? He’s a plush rabbit, a stuffed animal, about 9 cm (3”) tall. He he fits perfectly into the pocket of a cycling jersey; the kind of shirt that cyclists wear, with pockets across the back to hold our snacks, and other stuff so we don’t have to get off our bikes to get at them.
If you look closely at Max’s photo, you’ll see that he’s holding his own little cycling snack. Do you see it? It’s an orange carrot, in his right paw. Do you remember what the awareness colour is, for CRPS? You got it – it’s orange! Just like Max’s snack. So he ties in with the disease awareness activities ‘-)
For a while now I’ve been taking smartphone photos, to create my own awareness images for CRPS. I can’t do “real” photography anymore because I can’t use a camera with my left – wrong! – hand, but I can still apply the principles of photography with my phone. Composition, angle, natural lighting. No filters or photoshop for my photos!
I thought it’d be fun to show Max in one of my photos. The first time I did this, a couple of weeks ago, was as a joke. It was for a loved one’s birthday, in an Instagram post. You can read about the Biking Bunny here. The joke was on me, though, because that post got a whole lot of likes!
Which gave me an idea… Why not take Max cycling again, and post his photo on Instagram and other social media, but with hashtags and links to disease information this time?
Max agreed ‘-) so he rode with me to a waterfront park, and was posing for some photos. I was trying to be inconspicuous, as an adult taking pictures of a toy… but another cyclist saw me, and came over to ask what I was doing.
Somewhat embarrassed, I gave him a quick overview of CRPS. I explained that I was going to post the photo of Max on social media, to help me raise awareness of this disease.
This guy, Robert, seemed to be a serious rider. He was wearing the jersey of a cycling club, and had a good-quality bike and helmet. So I mentioned to him that cyclists should know about CRPS, because the disease can be triggered by a fracture or sprain – injuries that are common when riders fall off their bikes.
At that point, Robert asked whether I’d be willing to talk about CRPS with his nearby friends, and – of course! – I said yes. I laughingly told him that this was the point of my awareness-raising activities , -)
He brought me (and Max!) over a group of 5 guys, standing near a picnic table in the park, all wearing the same club jerseys. They were speaking in French so, after Robert introduced me, I did the same short talk about CRPS – but in French this time. (Like many in the Montreal area, I’m fluently bilingual, able to speak and write in either language).
That day, because of Max, I got to talk about CRPS with six people – complete strangers. Which symptoms to look for, in themselves or in friends, after a cycling injury. That it’s important to get a diagnosis and to start treatment quickly, within three months, to avoid long-term repercussions of the disease.
These guys seemed to be genuinely interested in the condition, and asked me quite a few questions. They were all concerned that CRPS affects women more than men, because one of their wives had just undergone surgery for carpal tunnel syndrome. And yes, CRPS can also be triggered by surgery.
As I was getting on my bike, to continue my ride, Robert came over to thank me for talking to his friends. It felt as thought I should have been thanking them for listening! He told me that I should keep taking Max along on my rides, and posing him for photos. To give other cyclists a chance to ask what I’m doing, and to find out about CRPS.
If follow me, or the #CRPS hashtag over on Instagram or Twitter, you’ll be seeing more of Max! As always, thanks so much for reading, and have a lovely day.
