My CRPS Story
November is CRPS awareness month, and, after five years, Dave is ready to share his story with the life-changing disease.
“Complex Regional Pain Syndrome, CRPS, formerly known as RSD (Reflex Sympathetic Dystrophy), is a progressive disease of the Autonomic Nervous System, and more specifically, the Sympathetic Nervous System. The pain is characterized as constant, extremely intense, and out of proportion to the original injury. The pain is typically accompanied by swelling, skin changes, extreme sensitivity, and can often be debilitating. It usually affects one or more of the four limbs but can occur in any part of the body and in over 70% of the victims it spreads to additional areas. CRPS is ranked as the most painful form of chronic pain that exists today by the McGill Pain Index.” (source)
In September of 2012, I was laid off by a construction company in Northern Arizona and returned to central Arizona where I’d spent a good deal of time as a cigar salesman and working in a cigar shop. Weekly parties and poker games were held there with lots of customers. I returned to find all my old friends and a couple of new ones. One of the new being a Russian gentleman named Ivan. He had a contagious smile, and everyone loved him. The next day Ivan was carrying a beastly cross made of thick steel. Having an ample collection of Cuban cigars, I quickly asked him if he’d make me something for trade. A couple days later, he brought me a chaveta (cigar roller’s knife) he’d made out of a lawn mower blade, customized just for me. Everyone was so jealous. I begged him to show me how he made the cross. He did, and I fell in love with metal work.
Ivan had been blacksmithing since the age of 7 when he started working the bellows for his village’s blacksmith. It was illegal to believe in God in Russia, and Ivan was a preacher. They can take your children and imprison you. Long life and story later, he and his family were able to leave. With a wife and 4 children in tow, he stepped off the plane in California (a church helped them get out) with $500 after exchanging his currency.
By the time I met Ivan in 2012, he had built a very successful metal business and was THE TOP metal artist in Arizona. Completing one job on a $24+ million mansion in Scottsdale that took an entire year and his WHOLE 18 person shop devoted to it and no other jobs. Only problem was when he was in Russia he was diagnosed with high blood pressure and prescribed medication for it. Years later in the states, a doctor told him the medicine was wrongly prescribed and destroyed his kidneys.
I learned that Ivan’s business had recently closed and all the contents were in his daughter’s backyard. He made too much money to receive assistance on his twice per week dialysis that cost over $40,000 each time. He couldn’t afford to pay cash for treatment, and his children didn’t want to continue the business without him.
He had a small shop built onto the side of his house where he completed little projects. Two days a week he had treatment and looked like a ghost. I had never been around someone who had dialysis and didn’t realize the effects. He told me this story and my heart sank. I learned that he had been looking for a kidney donor and several of his employees and vendors had tested to see if they qualified. Just shows how great of a guy Ivan is.
Then I found out that we are both O+ blood type, and I went and got tested. Perfect match! I complete all the other tests and procedures, and they asked when I’d like to donate. “We only do these surgeries on Wednesdays”. The next Wednesday was my birthday, November 28, 2012. The surgery staff sang me to sleep with Happy Birthday in the operating room, which was pretty cool.
Immediately after surgery, I knew something was wrong. I started experiencing what I called electric jolts in my torso and severe pain in my belly/groin. It felt like I was kicked in the ‘beans’ ALL DAY LONG. I started seeing a pain specialist and received tens units, creams, injections, medications, etc. – nothing helped. I went through the whole list of doctors and no one knew what was wrong with me. I even got cross looks from those who doubted my invisible pain story.
My scar from the surgery was real bad and purple. I ended up needing another surgery to repair it. While in there, the doctor repaired two hernias with a mesh. I woke up from this surgery and the jolts had spread to the rest of my body, from the tip of my head to the tip of my toes. And BAD.
More doctors and more doctors later, I was finally sent to a Neurological Specialist who diagnosed me with CRPS. I went through spinal injections, among other things, and am given a trial spinal stimulator to block the pain. As soon as the leads were hooked up, I felt a huge relief. I cried it felt so good.
The next day the tables turn. I wake up in a massive panic attack, and can’t get it to stop. The buzz from the stimulator was messing with me pretty bad. Miserable trips to the doctor and emergency room provided no relief, so they have no choice but to remove the stimulator and leads. Now here I am years later trying to get my head right so that I can seek relief again. I have 12-16 hour panic attacks that make me suicidal. I have dizzy spells where I fall down. I have mini panic attacks in restaurants and grocery stores. I cry for no reason. I am crazy sensitive at times and depressed.
I’ve fought to keep working with metal, but it’s heavy (LOL). I was forced to give it up and do lighter weight things. It took me 35+ years to find what I wanted to do for the rest of my life just to have it taken away from me by this disease. Every day is a fight.
Anyone can get CRPS at any time. There is no cure. For more information, please visit the National Institute of Neurological Disorders and Stroke. There is also a wonderful support group on Facebook: RSD/CRPS and Neuropathic Pain Syndrome. If you are suffering with an invisible pain, you are not alone.