Written by Sonny Grosso for the RSDSA blog.
In November 2015, “Security to FP2 STAT” came over the radio. As I reached the room, a patient who had just come down from surgery was violently coming out of anesthesia. He was 6’3” and I am 5’9”. After several attempts to calm and subdue him, I held him down tightly as they administered Adavan through his IV. Mission accomplished!
Within 20 minutes, my left hand swelled grossly and began turning purple. The pain was almost unbearable. I went to the ER and they x-rayed my hand and wrist. It showed no breaks or tears. Since it was a work related injury I was forced to stay home and not return until cleared.
After visiting three surgeons, undergoing CAT Scans and MRI’s, I was sent to physical therapy. The ice and heat stimulation made the plane flare up my arm into my shoulder. Big boy tears streamed down my face every time.
After numerous nerve tests and ROM tests, I was referred to a neurologist. After more nerve tests and ROM testing, he whispered, “I hope I am very wrong, but I believe you have CRPS, Complex Regional Pain Syndrome. Formerly known as RSD Reflex Sympathetic Dystrophy.”
“What the hell is that?,” I asked and he explained as neat he could to this layman’s brain. He instructed me to research it online and ordered a complete body scan. The scan showed no evidence of RSD/CRPS.
My next and final stop was to a pain management doctor who immediately confirmed RSD/CRPS after several tests and examinations. After trial and error on medications and my desire NOT take opioids, Gabapentin and Cymbalta were prescribed. It helped with the pain, but not the swelling.
I underwent ganglion nerve blocks, ketamine infusions, and more ice and heat stimulations. Nothing worked which depressed me greatly because I knew other patients who had almost immediately success with both. We raised and lowered the dosages until we found a level field of existence. Over the next four years, it spread from my left hand/wrist up the arm to my shoulder and then down the right shoulder, arm and wrist/hand. Often times it looks like I have cartoon hands.
By 2019, it was also in both feet with similar swelling. Workman’s Comp doctors were more than reluctant to concur with the diagnosis and treatments. Obviously the cost factor was their main ally in these decisions. But over time and much traveling around New York State, they slowly began to concur.
In 2019/2020 I was diagnosed with prostate cancer and underwent CyberKnife radiation. The radiation caused necrotic tissue damage to the prostate and bladder. Many rounds of antibiotics did not solve the burning urination that comes with the tissue damage. I was ordered to undergo 40 rounds in the Hyperbaric Oxygen Therapy (The Michael Jackson Tube).
After 15 rounds I began to notice the swelling disappearing. The pain increased slightly, but it was bearable. After 25 rounds, my hands and feet looked almost normal again. So while the HBOT didn’t help my prostate problems, it visibly had a positive effect on the abnormal swelling and discoloration. I’ll take it!
With all of the theories and practices out there, it was this fluke that helped me. But the key is to keep pushing. Keep asking the questions. Many people still look to us as fakes, hypochondriacs and scammers. Even though the disease, syndrome, disorder (whatever they want to call it) has been around.
The only mental thing about RSD/CRPS is what we allow it to do to us. Once we can understand that not everyone will grasp what we go though, unless there is grossly visible swelling, we can explain, advocate, and even teach/preach about this physically and mentally debilitating medical condition. If they get it, fine. If they don’t get it, fine. It’s our battle, our pain, our lifestyle change.
Surrounding ourselves with a great support group (regardless if they are family are not) , is just as important as any medication, physical therapy or counseling out there. Do what you love. Do not shut people out. Sing, dance, swim, visit, whatever brings a smile to your heart and gives you a mental break from the pain. We must also remember to sometimes put our superhero capes in the closet, swallow our pride and ask for the help we need to live each day.
I pray every day for all people, of all nations suffering from all diseases and disorders. As a cancer survivor now for the third time in my life, this is clearly the hardest fight I ever fought. So my fellow Warriors, I stand with you, fists up, ready to kick the medical alphabet around the world. I love you all and pray for your healing.
God Bless!
Connect with Sonny on Instagram via @sonnygrosso_songfthr.
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