Remember, It Is Your Body, It Doesn’t Belong to CRPS

Published on April 20, 2022 under RSDS General Info
Written by Jon Wells for the RSDSA blog. My name is Jon Wells and I have had full body CRPS for ten years now. I contracted the disease after have surgery on my right shoulder. It started in my right hand and arm, but quickly spread to lower extremities and beyond. Needless to say, CRPS completely changed my life. I went from an active person to someone loopy on meds all the time and sitting on the couch all day. Every doctors appointment meant adding another medication. At one point I was on two opioids, fentanyl being one of them. These were very dark times for me. What I wish others that don’t have CRPS would understand is that this…
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Review of The Healing Journal: Guided Prompts and Inspiration for Life with Illness

Published on April 6, 2022 under RSDS General Info
Written by Rebecca Moshay for the RSDSA blog. Our inner thoughts and the words we choose have a tremendous impact on our outlook on life. I found that as I read through some of the affirmations in The Healing Journal, I couldn’t help but feel uplifted. I even caught myself smiling. At other times they made me a bit emotional because they echoed many of the truths that I had arrived at on my own path to healing over the past decade with CRPS. The Healing Journal is filled with thoughtfully worded questions that you might hear at a chronic illness support group. It encourages you to challenge your inner thoughts and beliefs about your life, yourself and your future.…
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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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