My CRPS Journey

The story of Jacinta

Hi, my name is Jacinta and I am writing you to educate you on a disease that until last April, I have never even heard of before. 

Complex regional pain syndrome (CRPS) also known as Reflex Sympathetic Dystrophy Syndrome (RSDS) is a chronic pain condition that most often affects one limb (arm, leg, hand, or foot) usually after an injury. CRPS is characterized by prolonged or excessive pain and changes in skin color, temperature, and/or swelling in the affected area.

Today I chose to share my CRPS journey with you. This past year has been scary, rough, sad, yet full of hope. As of April 2019 I was diagnosed with complex regional pain syndrome. 

Since October 2018, I’ve been tested for every disease from diabetes to MS. I’ve had countless bloodwork, x-rays, CT scans, ultrasounds, and MRI’s. There was a 6 month gap where I had no idea what was wrong with me. 

In August 2018, I ended up with tendinitis in my left hand/arm. After dealing with it until October, where I could no longer stand the pain. I went to the ER and received a cortisone injection for relief. Little did I know, that would of been the biggest mistake I’ve ever made.

As soon as I received the injection, I felt an instant intense burn up my arm and in my hand. I told my family doctor a couple weeks later how painful it was and he suggested I see a pain specialist for further diagnosis because there was no way I should be still feeling an intense burn from the injection.

So how do you get CRPS from a cortisone injection? Who knows considering doctors don’t know exactly how you get CRPS in the first place! I’m not the only one who ended up with it after an injection, or even a needle prick. I’ve spoken to another lady who got CRPS in her left knee from cortisone injections. I’ve also read other people’s stories and some got it from a spider bite while others are a mystery and just woke up one day with it. 

The most common way to get CRPS is an accident or surgery. This disease only happens to 3-5% of the population. 

Since my diagnosis, I have tried many different medications, treatments and therapies. It has been a hectic year of fighting flare ups and pain I didn’t think was humanly possible. I am doing physio 4x a week with physiotherapy and occupational therapy.

So far I have tried: mirror therapy, acupuncture, whirlpool therapy, wax therapy, compression therapy and laser therapy. I have tried lidocaine injections and stellate ganglion blocks for treatments and over 30 different medications.

So why am I writing you and telling you this? For awareness of course! Because a year ago, I didn’t know what complex regional pain syndrome was.  

For more information, you can visit “Color The World Orange” page on Facebook. Also visit www.rsds.org.

Thank you so much for your time,
Jacinta