I Will Help the Unseen Be Heard

Published on January 5, 2022 under RSDS General Info
Written by Lucy R. for the RSDSA blog. In the beginning of 2015, I was diagnosed with CRPS after I fractured both of my ankles. I was devastated and taken aback to have not only such a painful condition, but also such a misunderstood and under-researched one as well. My life became unrecognizable compared to what it used to be- I went from being an active social fifth grader to a girl in a wheelchair going to appointments and hospital visits every day. Thankfully, after months and months of physical and water therapy, I was able to gain my function back to the point where I could walk on my own again. Despite this, my pain was still raging through…
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I Never Let CRPS Define Me

Published on December 14, 2021 under RSDS General Info
Written by Gianna Harris for the RSDSA blog. How and when did you develop CRPS/RSD? I was diagnosed with CRPS my freshman year of high school about 10 years ago after playing the sport I love, softball. I was at the last practice before our first game, the pitcher threw a pitch that went right for my hand. I did not think anything of it and just brushed it off. About two days later I lost feeling in my hand and half of my arm. It was then I knew something just was not right. After getting an X-ray the doctor casted my hand because it was acting as if it was broken. Within a week the pain was worse…
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My Journey Is Not a Story of a Spontaneous Miracle

Published on December 7, 2021 under Stories of Hope
Written by Tamara Gurin. My CRPS story began, like many CRPS stories, with misdiagnosis and despair over my rapidly worsening condition. Abnormal electromyography (EMG) test results led my doctor to conclude that I had carpal tunnel syndrome (CTS), despite several other symptoms that were clearly inconsistent with CTS. I disagreed with doctors, and kept searching for a more accurate diagnosis, which would offer me a solution for all of my symptoms. Meanwhile, my symptoms were spreading and getting worse: neuropathic pain in hands and arms, uncontrollable muscle contraction (dystonia), Reynaud’s Syndrome, chronic fatigue, brain fog, hypersensitivity to touch and temperature. Once I had a correct diagnosis, which was CRPS, my doctors told me that I had to learn how to…
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I Have So Much to Be Thankful For

Published on November 24, 2021 under RSDS General Info
Written by Dr. Lindsey Williams for the RSDSA blog. Imagine living in fear of losing your ability to live, to have a life.  A very wise friend once told me to live life, and always work towards making my dreams come true. Life is about doing what you love. Since recovering from my first experience with Complex Regional Pain Syndrome (CRPS), I have been determined to achieve my dreams. In the silence and stillness of my mind, the pain sneaks back in. I strive hard to keep busy so that there is no room for pain. Even the slightest tingle, ache, or burning sensation in my foot brings back horrific memories and fear of the unknown. My thoughts race. Do…
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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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