National CRPS Day: What Fun This Is

November 7th is National CRPS Day. CRPS is a debilitating pain condition that affects approximately 200,000 Americans, and greatly impacts the lives of those suffering from it. But it’s more than just your average chronic pain condition. So what does that mean? It’s time for another interview!

Let’s welcome my friend Ari, who will be joining us today to talk some about his experience living with CRPS.

So, Let’s Talk About CRPS For National CRPS Day.

Part One: History

Me: So, Ari, can you tell us a little bit about your history with CRPS?

Ari: When I was 14, I was on a bike ride with my dad. My dad likes to do tricks on his bike, so after he did a little jump, I attempted the same jump. But instead of landing swiftly on the ground, I went one way and my bike went the other. I fractured my left wrist and was in a cast for 6 weeks, then a brace for 3 weeks with 2 weeks of OT. Despite still being in pain, I was cleared to play volleyball.

After the first day of conditioning, I was in an immense amount of pain. I continued to stay in the brace for a few more weeks. My mom and I just knew that something wasn’t right. I shouldn’t still be in pain. My wrist shouldn’t still be swollen. (I want to note that I am transgender and during this time, I was still identifying as female) We went to 5 specialists (all men, I should mention). I was told to “Stop babying it,” “Toughen up,” and “You’re overreacting,” so we gave up. Maybe I was overreacting. So I took off the brace and just lived with the pain, taking Tylenol like it was candy. I lived like this for almost two years.

Fast forward to my junior year of high school. I was in German class, and of course, my wrist was hurting. I started to rotate it, trying to loosen it up and then crack! I’m always cracking my bones, but never in my life have I heard such a loud crack come from my body.

Then total numbness. I couldn’t feel or move my wrist. I went straight to the nurse, called my mom, and my mom took me to urgent care. They put me in a brace and told me to see an orthopedic surgeon. Ugh! I don’t want to see another doctor just to tell me I’m overreacting! We still went and believe it or not, he believed me. Because of the numbness, he sent me to a neurologist. The neurologist also believed me. He sent me to a pediatric hand specialist. She took one look at my case and diagnosed me with Complex Regional Pain Syndrome.

Part Two: Living With CRPS

Me: Do you have CRPS Type 1 or Type 2? Can you tell us a bit about the differences between them?

Ari: I have Type 1 because I did not have direct nerve damage. Type 1 occurs after surgery or injury. Type 2 occurs after direct damage to the nerve. It’s not uncommon for amputees to be diagnosed with Type 2, since they are literally having their nerves severed.

Me: As we all know, CRPS is different than just your standard, run-of-the-mill chronic pain, something both you and I have our fair share of experience with. Can you talk a little bit about how the two are different?

Ari: It’s not just pain. There’s burning, numbness, tingling, sensory issues. I know when my Stellate Ganglion Blocks are wearing off when I can’t touch velvet. On the McGill Pain Scale, CRPS pain is an 11, right above childbirth. I live with this pain every day. SGBs (Stellate Ganglion Blocks) have helped greatly, but that doesn’t mean the pain and burning are gone.

Me: How has living with CRPS impacted your life? What, if any, changes have you had to make to your life?

Ari: I’m not going to lie, I’ve lost a lot that I’m still grieving. I played softball, volleyball, played guitar, danced. I had to stop it all. I’m grateful to be back at dance and playing the guitar, but I still struggle. It’s been a matter of finding new hobbies. There’s also just living with pain in general. I was 14. It was scary, confusing, embarrassing. I tried so hard to keep up with everyone and that only made the pain worse. I’ve learned to go at my own pace. It’s tough finding people who get it but when you find them, they’ll be some of the greatest people in your life.

Part Three: National CRPS Day

Me: Are there any treatments available for people who have CRPS? Can you tell us about them?

Ari: Yes! I do want to mention that what works for me may not work for others and what works for others may not work for me. I get Stellate Ganglion Blocks every 4 months. Stellate Ganglion Block involves inserting a small needle through the skin to the sympathetic nerve system. This is best for those who have CRPS in their upper extremities. Along with the blocks, I take Gabapentin, which basically “quiets” my nerves.

My friend, who also has CRPS in her foot and ankle, has a Spinal Cord Stimulator. This fun device has tiny electrodes and sits within the epidural space close to the spinal cord. The electrodes release a small electrical current to the spinal cord that inhibits pain transmission. She also gets intravenous Ketamine. Ketamine is a strong anesthetic that substantially alleviates pain.

Me: What does having a National CRPS Day mean to you?

Ari: This is actually the first “official” National CRPS Day. It’s a day that brings our community together to shout from the rooftops that we need further research and funding. Having a whole day of awareness gives us the opportunity to educate our friends and family. CRPS is not a well-known condition. I’ve had to explain it to many doctors.

Me: What are some of the biggest things you want everyone to know about CRPS?

Ari: CRPS is not a psychological condition; it is a nerve condition. If someone says they are in pain, they’re in pain. I would have been diagnosed earlier if only some medical professional believed me. It took two years to find an answer. That is not uncommon whatsoever.