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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Do What Makes You Happy and Don’t Give Up

Published on August 17, 2021 under RSDS General Info
Written by Lena Costantini for the RSDSA blog. How and when did you develop CRPS/RSD? I was 17 when I was diagnosed with CRPS after a bunion procedure on my left foot.  What has daily life been like since your diagnosis? Life has definitely had its ups and downs since my diagnosis. It is important to make sure you take care of yourself and know your limits. Do what makes you happy and don’t give up. What is one thing you wish those without CRPS/RSD could understand? One thing I wish those without CRPS could understand is that when we say we are in pain; we mean we are in pain. Don’t push someone in to thinking it’s all in…
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Ask As Many Questions as Possible. No Question Is a Bad Question.

Published on July 16, 2021 under RSDS General Info
Written by Stephen M. Dorian for the RSDSA blog. How and when did you develop CRPS/RSD? I have had CRPS/RSD for over 10 years. My CRPS/RSD started after my right wrist was smashed by a revolving door at my downtown Philadelphia cancer research office building. As I was walking into the office building complex, my attention was momentarily distracted by a co-worker asking me a question. As I verbally responded to her, without looking forward, I stupidly re-extended my arm to continue to push the revolving door. Suddenly, my right wrist was smashed by the revolving door. My wrist made the huge revolving door suddenly stop in its place. The instant pain I felt was the most sudden and extreme pain…
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Why We Walk

Published on June 26, 2021 under RSDS General Info
Written by Bryan Pope of The Cochran Firm - Dallas for the RSDSA blog.   Walking. We all take for granted the ability to do this. Unless we can’t…. and then it makes all of the difference in the world that we do not get to take it for granted. I have been helping clients all over the country fight their legal battles for over 25 years who have various stages of CRPS.  It is devastating to see how someone can be athletic, running, working out and healthy one day and then the next day something happens to change the fabric of their life. The ability to put one foot forward after another becomes a challenge to the point where…
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Shelter Me From The Rain

Published on June 16, 2021 under RSDS General Info
Written by Erica Santiago. Reposted with permission for the RSDSA blog. Back in November 2012, I was on my way to a doctors appointment out in Boston Massachusetts. I was hit on the left side of my car by a very large tractor trailer truck during a merge in the road. I did not know at the time that this accident was going to be the changing point in my life. The condition I developed from this accident made everything different and quickly, seemingly overnight. My left hand ended up not working correctly five days after the accident. I woke up and felt a very strong weakness in my left hand. I called my neurologist that I see for migraines…
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Take Control of Your Journey

Published on May 5, 2021 under RSDS General Info
Written by Joshua Borg for the RSDSA blog. How and when did you develop CRPS/RSD? In July of 2019 I slightly hit my shin against a piece of lawn equipment. Later that day I could tell something was wrong based on how it felt. In the following weeks and months, I visited with multiple doctors who ran multiple tests, yet none of them could explain my pain. After an EMG around February 2020, doctors noticed nerve damage in both legs. After ruling out almost everything else, they determined that I have CRPS. What has daily life been like since your diagnosis? In the simplest terms… different. Having had this for a little over 18 months now, I feel as though I…
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The Horror of Being the Parent of a Child in Daily Screaming Pain

Published on April 7, 2021 under RSDS General Info
Originally written by Dr. Katinka van der Merwe on The Spero Clinic blog. Reposted with permission for the RSDSA blog. To Parents of Children with CRPS – I want to acknowledge one of the groups of people affected by CRPS the most—: parents of children with CRPS. It doesn’t matter if your baby is two years old or fifty-three. As a mother myself, I think the only pain worse than CRPS is watching your child suffer from it. My phone calls with you, brave parents, both horrify me and inspire me. You tell me stories of endless suffering. Stories of your daughter missing her prom, and of your son never being able to walk on to a baseball field. Stories of…
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