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You Will Be Found

Published on November 17, 2021 under RSDS General Info
Written by Shannon Leidig for the RSDSA blog. Everyone who knows me knows how much I love music (classical as well as Broadway show tunes). Music has always been a huge lifeline for me, even more so the past four years as it rescued me from the pits of hell battling the beast known as RSD/CRPS. Being diagnosed with this during my freshman year of college detoured what I started out majoring in; however, it has been my one steady constant. Today as I was playing with my eight-year-old Bichon, Finian Blue, I was listening to my tunes and this song from Dear Evan Hansen "You will be Found” hit me like a ton of bricks. I have heard this song…
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Her Words Were the Ripples in the Pond That Just Helped Me Survive the Biggest Crisis of My Life

Published on November 10, 2021 under RSDS General Info
Barry M. Wein, MSW (He/Him) is a writer, storyteller, advocate and ally. For more than 20 years, he has helped good causes share their stories, so they can do even more good in the world. These days, Barry feels compelled to share his own stories because they simply demand to be told. In the video below, Barry shared his experience with CRPS for an event with the Madison Reading Project, a nonprofit organization that promotes literacy to underserved children where he lives in Madison, Wisconsin. He shared this video with us as he believes that "it might be helpful for other people living with CRPS." The RSDSA team always enjoys hearing from Barry as he has such a way with…
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The Key Is to Keep Pushing

Published on November 3, 2021 under RSDS General Info
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…
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FAQs – RSDSA’s Treating the Whole Person: Optimizing Wellness Conference – 2021

Published on October 22, 2021 under RSDS General Info
The RSDSA team is excited to have you join our second virtual conference from October 25th through October 28th. Below are a few FAQs to ensure you have an amazing experience!   Q. Is the conference free? The conference is 100% free to join!   Q. When does registration close? Registration does not close! You can register at bit.ly/rsdsa2021b anytime, even once the sessions have started!   Q. What time does the conference begin? The conference officially begins with networking and our expo hall at 6:30p Eastern / 3:30p Pacific each night. Sessions begin at 7p Eastern / 4p Pacific each night.   Q. Which browser should I watch the conference on if I'm on a desktop or laptop? Hopin…
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But the One Thing You Cannot Ever Do Is Quit

Published on October 6, 2021 under RSDS General Info
Written by Belinda Conarty for the RSDSA blog. How and when did you develop CRPS/RSD? I had surgery on my ankle in July 2000 and the doctor nicked a nerve during surgery while repairing a torn ligament. When I did not heal after surgery, I was bounced from doctor to doctor. In October 2000 I got the proper treatment and diagnosis that changed my life forever. I was diagnosed with CRPS stage II and a week later I was told I had Fibromyalgia and Lupus. My world as I knew it was shattered. It started in my left leg and almost 21 years later I have full body CRPS. What has daily life been like since your diagnosis? Living with one…
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Let Us Know That Our Capabilities Are Enough

Published on September 29, 2021 under RSDS General Info
Written by Shannon McMullen for the RSDSA blog. How and when did you develop CRPS/RSD? I developed CRPS about three and a half years ago after two left ankle sprains led to a bad case of peroneal tendonitis. We now know that EDS also contributed to those sprains not healing. I went through physical therapy, aqua therapy, MRI’s, X-ray’s and eventually was immobilized, which really led to the CRPS symptoms coming to light. Within a short time, it spread throughout my body and I began to experience some other symptoms, like nausea and dizziness. I also have Median Arcuate Ligament Syndrome, which caused a compression of my celiac artery and damaged the surrounding nerves, causing severe GI pain and symptoms.…
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There’s So Much More Out There for Me to Live For

Published on September 15, 2021 under RSDS General Info
Shared with permission from Alexis Byers for the RSDSA blog. CRPS Warrior Alexis Byers posted the below video message on her YouTube Channel focused on her journey with CRPS. When we connected with Alexis, she said, "this is a message I needed when I was 17, scared, and just diagnosed. 🧡" We are so happy that she is using her voice to help others who are newly diagnosed. Connect with Alexis on Instagram at @lexiii_beee. Please consider making a donation to RSDSA today! -- Full video transcript: When I was just 17, I was diagnosed with Complex Regional Pain Syndrome, the worst pain known to man. Prior to having chronic pain, I was incredibly happy, relaxed, and an overall social girl. I…
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We Are All Warriors Now and in This Together

Published on September 8, 2021 under RSDS General Info
Written by the Emily C. for the RSDSA blog. How and when did you develop CRPS/RSD? It was winter break and my best friend and I were so excited to be off from school, so we had a dance party. As a 10 year old diva, I thought it would be a great idea to stand on a dresser and perform like a little celebrity. As the closing act, I jumped off and hurt my left foot. I remember immediately crying. My parents iced it and we went on assuming it was just a sprain, which is what the doctor diagnosed the following day. I was prescribed a boot to help it heal. I remember crying and refusing to wear it,…
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Keep Your Head up High and Keep Going

Published on September 1, 2021 under RSDS General Info
Written by the Inaara Jiwani for the RSDSA blog. How and when did you develop CRPS/RSD? I developed CRPS after a ganglion cyst removal surgery on my right wrist in October 2017. A few months after the surgery I noticed that for some reason the surgery site was still tender and I was feeling much more pain that I was feeling before the surgery. My wrist would feel numb and a tingling sensation and I started noticing I could not do simple daily tasks. I went in for a second opinion on my wrist and we had tried physical therapy, occupational therapy, a Ganglion Stellate Block, Cortisone Steroid Shots, and many more “cures” to help me with the debilitating pain.…
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Heal Your Trauma, Set Your Body Free

Published on August 25, 2021 under RSDS General Info
Written by Dr. Katinka van der Merwe for the RSDSA blog. I have treated almost 700 patients suffering from severe chronic pain to date. An interesting phenomenon I have noticed through the years is that many of my patients have suffered from sexual abuse and/or PTSD. This led me to study the link between physical and emotional pain, as well as sexual trauma.  I want to quote Catherine Woodworth who said,  “Trauma permanently changes us. This is the big, scary truth about trauma: There is no such thing as 'getting over it.' The five stages of grief model marks universal stages in learning to accept loss, but the reality is in fact much bigger: A major life disruption leaves a…
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