Last summer I received an out of the blue email, from the Executive Director of PARC. That’s the national patient organization for my rare disease, Complex Regional Pain Syndrome (CRPS). CRPS used to be called Reflex Sympathetic Dystrophy (RSD), so the new label for the disease meant that many groups had to change their names.
PARC, a very small organization, simply rebranded itself to “Promoting Awareness of RSD/CRPS in Canada”; very economically using the “C” for both CRPS and Canada ‘-)
Why did PARC email me? I’m so glad you asked! They had seen some of my disease-awareness posts on social media, and had read about some of my patient advocacy activities. Based on these, they asked whether I’d be willing to write a short article for the winter edition of their newsletter. If you know me at all, you’ll immediately guess that I said yes!
This volunteer assignment was for a 500-word piece with my advice for anyone else living with CRPS. The number of people with this disease in Canada is quite small, which is why it’s considered to be a rare condition.
A 2017(1) report put the number of CRPS cases here at 9,000, while our population was about 36.5 million. That’s about 0.02% of the population who might have CRPS; put another way, that’s 2 out of every 10,000 people, or 1 out of 5,000.
“It’s not clear how people get it but it usually is believed to be caused by damage or malfunction of the central nervous system, which controls most functions of the body and mind…
Emanuela Campanella. Global News. 2017
Over time, if the syndrome is not treated in the first six months, it can become a long-term disability, leaving people unable to move and in constant excruciating pain.
There is no cure for CRPS.
There is what they call a pain scale, which rates the most painful conditions.
Labour [giving birth] is right up there, but CRPS is higher and it’s constant day and night.”(1)
It’s, at the best of times, a difficult condition to live with. I loved the idea of writing some advice for other patients with CRPS, but soon came up against a significant roadblock. Each person with this disease may have a different version of it, a different set of the multiple symptoms.
That means that what works – sometimes! – for me might not be appropriate for anyone else with CRPS. So this is what I wrote. It has now been published in the PARC newsletter, which is available only with a paid membership. Because of that, I agreed to write a story for them only if I could also post it here; for free:
Diseases like CRPS can teach us a lot. Scientists and doctors can learn by studying how our brains, neurons, and other biological features interact in CRPS. Some search for genetic markers, while others look for ways to prevent it. Ideally science will someday eliminate CRPS, maybe through prevention.
As people living with CRPS, we learn a lot as well. How tough we are, in the face of horrific pain. Even on the days when we don’t feel all that strong, we are. It’s important to remember that. Each of us, individually and together, are strong. If you’re reading this, it’s because you’re strong. You’re making an effort to read this, to be here in this moment.
For this story, I was asked for my advice to others coping with CRPS. I had all sorts of ideas of what to write, things that have helped me. But CRPS isn’t one-size-fits-all. When the medical journals say ‘each patient presents differently’, it means that we each have a different version of CRPS.
HealthLink BC sums this up well:
“CRPS isn’t the same for all people. Many have mild symptoms and slowly get better over time. But some people may not recover and may be left with long-lasting pain and disability.”(2)
Healthwise, Inc. HealthLink BC. 2017.
What works for me, to help me to deal with CRPS, may not work for you. Beyond that, though, is my advice: Find something you love, and adapt it to what you can do.
I loved outdoor sports, being in nature. Cycling was one of my favourite activities, before CRPS. So I found a way to ride my bike, without using my right arm. It was scary at first; I was terrified of falling onto my CRPS-affected arm.
There’s a paved bike path close to our home, so we started there. My husband rode right beside me, that first time. His left hand gripped my right shoulder, keeping me from falling. After a few minutes, I asked him to let go.
Do you know what I felt? Joy. Freedom. Exhilaration. I could do this!!! My arm was hurting, but I’d have been in pain even if I’d stayed home. I realized in that moment that I needed to do things that bring me joy. I thought I’d never do nature photography again, with right-hand CPRS, but decided to find a way. Now I use my photos to raise CRPS awareness!
Yes, I’ve had pain flares while cycling. Sometimes I have to stop riding to vomit, from pain, over and over again. Most of the time, though, my pain doesn’t feel quite so bad when I’m riding. For hours afterwards, I feel better; sometimes just a bit. But with CRPS, a bit less pain can make a huge difference.
After a ride I can concentrate more, even sleep a bit better. “Physical activity is a well-documented, viable therapeutic modality for chronic pain conditions with beneficial effects on pain, sleep, cognitive function and physical function.”(3) Exercise and nature are what help me deal with CRPS.
And that’s it, my five hundred words of advice-but-not-advice for others who live with CRPS. Which is, of course, also applicable to so many other chronic pain conditions: “Find something you love, and adapt it to what you can do.”
Whatever your reason for stopping by, I hope you enjoyed this post ‘-) Thanks so much for reading, and please feel free to comment over on Instagram or Twitter!
References
(1) Emanuela Campanella. Living with CRPS, an excruciating chronic pain condition that can ‘happen to anyone’. Global News. 21 May 2017. Online:
https://globalnews.ca/news/3451619/living-with-crps-rsd-chronic-pain-condition/
(2) Healthwise, Inc., for HealthLink BC. Complex Regional Pain Syndrome. Updated 09 Oct 2017. Online:
https://www.healthlinkbc.ca/health-topics/abn2964
(3) Ambrose, Kirsten R, and Yvonne M Golightly. Physical exercise as non-pharmacological treatment of chronic pain: Why and when. Best practice & research. Clinical rheumatology vol. 29,1 (2015): 120-30. 23 May 2015. Online:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4534717/