Complex Regional Pain Syndrome
CRPS

My CRPS Journey: Part One

May 1, 2020

Diagnosis and Treatment

Definition: Complex Regional Pain Syndrome is a malfunction of the peripheral and central nervous system. It is a chronic pain condition that most often affects one specific limb. The chronic pain develops after injury, stroke, surgery, or heart attack. The condition is rare. Once you develop CRPS, you have it for life.

CRPS is characterized by pain that is far greater than would be expected from the injury that causes it.

CRPS is severe nerve pain.

Throughout my studies, treatments, many doctors, and various medications, I have learned quite a bit about my diagnosis. So before I go into my own journey, I want to talk a little bit about the science behind CRPS.

There is an important balance happening between the Sympathetic and Parasympathetic Nervous Systems. These two systems MUST work harmoniously for the body to function properly. CRPS happens when these systems malfunction. To begin, the Sympathetic Nervous System is in control of the body’s “fight or flight” response to potential danger. It boosts the body’s alertness and heart rate, which sends extra blood to the muscles. Then, there is the Parasympathetic Nervous System, which is responsible for calming and relaxing the body. This system directly affects sleep.

So to simplify…the Sympathetic Nervous System is the accelerator on a car and the Parasympathetic Nervous System is the brakes. When these two do not work in harmony, the body goes haywire. The brain is sending the wrong signals to the body. Specifically with CRPS, the Sympathetic Nervous System takes control and slams on the accelerator, which in turn, makes it incredibly tricky for the body to heal and leads to insomnia.

My journey began in mid-January 2020. I was healthy, young, and active. My diet was predominantly plant-based, with the occasional pizza splurge. And then I was injured at my job. The pain was incredible and I was sure I’d torn a ligament or fractured a bone in my hand. Flash-forward a month and after two sets of x-rays and an MRI, the doctor was certain I had ulnar impaction because my ulnar bone in my right wrist had quite a high positive variance. Meaning, my ulnar is longer than my radius. I began Occupational Therapy and mentally prepared myself to have ulnar redaction surgery.

Then, everything fell to pieces in March. It happened quickly. My fingers, wrist, and forearm became unbearable to touch. My hand was swollen, dark purple, sweating, the tips of my fingers became white and wrinkly, and I could no longer move my hand. The pain was the worst pain I’ve ever experienced in my life. My OT became incredibly concerned and had my visit with the surgeon moved up. The surgeon took one look at my arm and diagnosed me with CRPS.

The craziest part is that all of this was happening in the middle of the COVID-19 pandemic.

Immediately, I became a priority patient and was sent to the pain management doctor. This doctor’s reaction was nearly identical to the surgeon, and he confirmed that it was in fact CRPS. There’s a certain look doctors began giving me once they learned of my CRPS: Sadness, followed by a long stare at my arm, and then a heavy sigh. This response happened over and over and over. 

My initial reaction to the diagnosis was to laugh. I’m young and healthy! What do you mean I have chronic pain and a malfunction in my nervous system? That’s ridiculous! Truly, it took a few days for the news to sink in. As you can expect, I began experiencing all the psychological stages of DABDA (denial, anger, bargaining, depression, acceptance.) For months I went through DABDA on a weekly basis. I would go from how is this happening to me, to fits of rage, I just wanted this to go away, I wanted the pain to go away, and it got hard to get out of bed. But I knew (I knew!) that I had to find a way to toughen up and persevere.

I was soon scheduled for my first Stellate Ganglion nerve block in my neck and was given nerve pain medications. I won’t go into what medications finally worked for me (there was a bit of trial and error), because what worked for me may not work for you. I threw myself into researching about CRPS and came across Doctor Katinka van der Merwe’s book Putting Out The Fire. She specializes in treating CRPS patients and heads up the Spero Clinic in Arkansas. THIS BOOK WAS A GAME CHANGER FOR ME. Not only does she deconstruct the medical science behind CRPS, but she has evidence to show that remission is possible and living a “somewhat” normal life is possible. 

It was the encouragement I so desperately needed.

Not only did this book help me understand CRPS, but it gave me immense hope that there was a light at the end of the tunnel. That may sound simple, but when you haven’t slept more than 4hrs a night for several months because you are in so much pain and your body feels like it’s running on adrenaline, a little bit of hope goes a long way.

I needed to stay positive, be grateful, and fight like hell to get better. Defeat was not an option. I was getting my life back.

When the time came for my first nerve block, I wasn’t sure what to expect. I’m fine with needles and blood; it doesn’t bother me. However, when I walked into the surgical room and laid down on my back on the table, I began to panic. Three nurses immediately surrounded me and began hooking me up to oxygen, I had an IV in my arm for the sedation, and my heart rate was also being monitored. They began slathering the front of neck with iodine…and being allowed to watch all of this was honestly petrifying. I knew the Stellate Ganglion block was close to my throat, but it wouldn’t be until after the injection that I realized just how CLOSE to my throat and carotid artery the injection actually was. No room for error. Thankfully, I have an excellent doctor and the block was a success.

I continued OT for the next six months and was scheduled for another three injections that would turn into ten.

Stay tuned for my next post!

xoxo

Bekah  

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