I Try to Be a More Positive Person

Published on March 30, 2022 under RSDS General Info
Written by Tony Gaburick for the RSDSA blog. My story began on October 16, 1991. I was at work leaning on my left arm taking a window out of a home. All of a sudden, I got a shot of pain from my left collar bone down my arm and my arm went numb. After several doctor appointments, I was diagnosed with Thoracic Outlet Syndrome and Reflex Sympathetic Dystrophy (known as Complex Regional Pain Syndrome). I have had 10 major surgeries to present and three pain pumps plus legions in my spinal cord T6-T7.  I have been receiving Brachial Plexus Blocks and Occipital Blocks 2-3 days a week for the past 27 years to stay functional. I also suffer from…
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Focus On Small and Simple Successes

Published on March 23, 2022 under RSDS General Info
Written by Ed McArdle for the RSDSA blog. My name is Ed McArdle, a recovering chef with bi-lateral hand pain. The letters CRPS, have only recently been added to my diagnosis and so like many of you my new life journey has begun. My life will change, has changed, and a new perspective on HOW to live is now my new focus. As one can imagine I was constantly using my hands, chopping onions, slicing and dicing every manner of vegetable and meat, opening an array of boxes, cans and bottles, plunging hands into hot water, removing icy things from the freezer, stirring, flipping and whipping creams to a froth. Frying, steaming, blanching, braising and sautéing plate, after plate, after plate.…
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My Pain Is Not Made Up

Published on February 10, 2022 under RSDS General Info
Written by Valrie Ricketts for the RSDSA blog. How and when did you develop CRPS/RSD? In 2018, I developed CRPS after breaking my left hand during a fall. What has daily life been like since your diagnosis? It has changed my life significantly. I never know when I will experience a flare. My days are determined by how my hand feels. What is one thing you wish those without CRPS/RSD would understand? I would like people without CRPS to understand that even though I look fine, I may be experiencing great discomfort. My pain is not made up. What advice would you give to newly diagnosed Warriors? My advice to those who are newly diagnosed is to pace yourself, do not…
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An Overview of RSD/CRPS

Published on January 20, 2022 under RSDS General Info
Written and researched by Tracey (Tipton) Morales for the RSDSA blog. RSD (Reflex Sympathetic Dystrophy), is what I was diagnosed with and was the name used for years. The current name is CRPS (Complex Regional Pain Syndrome), although the name seems to constantly be changing, I have recently heard it referred to as AMPS (Amplified Musculoskeletal Pain Syndrome) and RND (Reflex Neurovascular Dystrophy). Confusing right? I know, this is probably why there is very little knowledge out there about this disease, especially among medical professionals, and why there is not enough research and no cure. But that subject, the many names of RSD/CRPS, is for another post, on another day. The more information we share about RSD/CRPS the better it…
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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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