Published on November 14, 2019 under RSDS General Info
Written by Barbara Schaffer for the RSDSA blog. My name is Barbara Schaffer. I am 70 years old and have had RSD for 32 years. It started with a stretched brachial plexus and spread through my entire body. I live with my husband, Paul, of 49 years. My daughter,  son-in-law, and three grandsons live a block away and they have all been the lights and motivation in my life.   RSD and PAIN 32 years ago, my life changed when a very minor accident caused by RSD (reflex sympathetic dystrophy). PAIN, disability PAIN, treatments, complications from treatment PAIN, RSD invading my arms, legs, chest, face, lungs, stomach, full body PAIN, great doctors who tried but couldn't help. Lousy doctors who…
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Have Hope and Continue to Fight

Published on November 13, 2019 under RSDS General Info
Written by Patti Sauer for the RSDSA blog. I broke my tibia sometime around January 2018. After walking on it for four months, enduring several misdiagnoses, and fighting for an MRI, it was confirmed in April that I had a stage 4b break with edema in the bone marrow. This is the worst kind of break and worst stage of a break. Adding to it, the edema in the marrow was swelling out of the break, causing the break to stay open and not heal. Unfortunately, I would have a very long and very sensitive healing process. Because of low bone density, surgery to repair the break was impossible. Doctors confirmed that a rod in my tibia "would shatter the…
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Do Not Let The Pain Win

Published on November 12, 2019 under RSDS General Info
Written by Kathleen Fechter for the RSDSA blog. How and when did you develop CRPS/RSD? I hurt my knee at work and my CRPS developed from that injury about 5-6 years ago. I was misdiagnosed about three times. What has daily life been like since your diagnosis? Everyday was limited, I could not walk to the mailbox on my own, and if I did it was a good day. My husband and I could not really enjoy our time as newlyweds because each day was based on my pain levels and what I could handle before needing to go back home. I was able to hold a job, but I was usually on strong pain meds until they did not…
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Nicole Shelton Refuses To Give Up Her Life For CRPS

Published on November 11, 2019 under RSDS General Info
Written by Nicole C. Shelton, J.D. for the RSDSA blog. How/when did you develop CRPS/RSD? In 1990, at the age of 15, I went in for what should have been a routine arthroscopic knee surgery to repair a torn meniscus. When I went in for my two day post-op appointment, the area below my left knee, literally the entire leg, foot, etc., was ice cold, swollen and shiny. At that point in time, RSD was not well known (I think the statistic I was given was that I was one in 500,000). But, my surgeon as a kick-butt surgeon who just a few days before surgery read an article on this new phenomena. He explained that the nerves in my…
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Connie France is Still Here and Still Fighting CRPS

Published on November 10, 2019 under RSDS General Info
Written by Connie France for the RSDSA blog.   In 2016, my father was in his third stage of Alzheimer’s. He was coming out of a truck, but just a little too fast, and I went to grab him so he would not hit the concrete. At that moment I knew I had done something to my back. After getting the test results saying that I ruptured four discs in the lower part of my back, they started therapy and injection. Since nothing was helping after all failed attempts, my doctor said, "You are going to have to have surgery." I was very reluctant to do the surgery, but he explained to me that it was a very simple procedure.…
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Don’t Abandon Your Loved Ones With CRPS

Published on November 9, 2019 under RSDS General Info
Written by Jeff Schwartz for the RSDSA blog. How and when did you develop CRPS/RSD? I do not have CRPS, but my wife battles it. She was diagnosed 2015, but had been battling it beforehand. We believe it resulted from an injury in 2003. What has daily life been like since your diagnosis? As her caregiver, it has been difficult. I have watched this vibrant woman who enjoyed doing things spend days in bed, trying to overcome tremendous pain. When there is a "good" day, we try to make the most of it. We have a saying that works for us: One day at a time.   What is one thing you wish those without CRPS/RSD could understand? This is…
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Emily Baddorf’s CRPS Journey

Published on November 8, 2019 under RSDS General Info
Written by Emily Baddorf for the RSDSA blog. How and when did you develop CRPS/RSD? I developed RSD at the age of 15 following a sprained ankle. The injury did not even hurt at the time and I continued the tennis lesson I was in the middle of. About 24 hours later, my ankle was swollen and was black/blue/purple. The pain was unbearable and I could not walk on it. What has daily life been like since your diagnosis? Life has had constant ups and downs since that day. I have had extremely low moments; being told I would never walk again, experiencing depression severe enough that it caused me to attempt suicide, numerous surgeries and being completely isolated from friends and family. The…
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Don’t Give Up on Me

Published on November 7, 2019 under RSDS General Info
Written by Shannon Schildt-Leidig for the RSDSA blog. Anyone who knows me knows what a huge lover of music I am – and that any time I am in the car it is either on the Broadway or Classical channels; though, when it is football season I tend to listen to ESPN. However, there was a day when I was in the car and the programming on the channels I normally listen to did not fly so I turned to a local radio station and I heard this upbeat song and I liked it (major rarity!) – but I did not find the name of it – so after I got home I went to my friend Google and looked…
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Never Give Up On Yourself

Published on November 6, 2019 under RSDS General Info
Written by Julie Manni for the RSDSA blog. How and when did you develop CRPS/RSD? My journey with CRPS/RSD started in the fall of 2001 when I was 12 years old. I developed a gastric stomach ulcer and while I was on bed rest to heal the ulcer, I developed this severe aching crushing pain in both my legs. Six months later I was diagnosed with CRPS/RSD. The pain started in my legs but over the years spread to my entire body. What has daily life been like since your diagnosis? Daily life has been kind of a roller coaster over the past 18 years. I have had many debilitating years and many functional years. I have had times where…
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Every Person Is Fighting a Battle We Know Nothing About

Published on November 5, 2019 under RSDS General Info
Written by Abigail Bourcy for the RSDSA blog. How and when did you develop CRPS/RSD? My name is Abigail I developed Complex Regional Pain Syndrome when I was 12 (10 years ago). I broke my fibula playing soccer and was put in a boot for six weeks. Doctors assumed it was a simple break, but after six weeks in a boot I was still refusing to put weight on it and complaining of tingling sensations. My mom and I went to every doctor we could find in the Northeast area; it took months to get a doctor to believe me. Finally, we visited an orthopedic physician assistant who within minutes of looking at my symptoms, knew it was CRPS. However,…
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