Do Whatever It Takes to Find a Cure

Written by Melissa Uchic for the RSDSA blog. How and when did you develop CRPS/RSD? My initial injury is more of an educated guess between myself and my doctors. I can trace symptoms back to an epidural during childbirth in 2005. What has daily life been like since your diagnosis? My life has been ever-changing since 2005. It started with just back pain, but as an athlete, I was used to back pain and tried to charge through it. But over the years, and more significantly so in the past two years, my quality of life has been declining. My CRPS has spread to my whole body. I have not been able to use my thumbs for over a year,…continue reading

The Sun Will Rise Again

Written by Juanita Franke for the RSDSA blog. How and when did you develop CRPS/RSD? I developed CRPS in October of 2018. While working as a faculty member at Pacific Northwest Ballet and teaching Pilates, I sustained a minor injury to my left knee. I knelt down, heard a ”pop, ” and spent the afternoon icing my knee. By the next day, I could only walk with crutches. Within two days, I started experiencing the swelling, discoloration, and skin temperature differences that I now know to be symptoms of CRPS. Unfortunately, it took three and a half months for a diagnosis. While I know my diagnosis was relatively quick compared to the averages, it was nonetheless frustrating to endure six weeks…continue reading

We Are All in This Together

Written by Devery Mills for the RSDSA blog. How and when did you develop CRPS/RSD? What has life been like since your diagnosis? I have been a nurse for many years and worked in the ER and Cardiac. In 2007, I was seen in the ER with a nasty stomach bug.  Traditional medications were not working so I was given a different nausea drug two times. It was not given correctly according to pharmaceutical instructions and it caused significant damage to my right arm. I suffered thrombophlebitis and infection. I was in the hospital for a week on IV antibiotics and consequently the beginning of my journey with RSD. My husband and I lived on a 43 ft boat for…continue reading

We Are on Fire, but We Are Strong

Written by Jeannette Pello for the RSDSA blog. How and when did you develop CRPS/RSD? My CRPS diagnosis was in 2015, but before that I had four injuries in my right foot and the orthopedic told me that could be a result of those previous injuries. In 2015, my injury was the worst because the swelling was pretty impressive and the pain was extremely hard. I felt a burning pain, but at the same time I had a lot of sensitivity to everything. I had some changes in the skin texture and it hurts when I tried to move it (even when it is difficult to have muscle movement). I live in Puerto Rico and I cannot even tolerate the…continue reading

RSD and PAIN

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…continue reading

Have Hope and Continue to Fight

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…continue reading

Do Not Let The Pain Win

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…continue reading

Nicole Shelton Refuses To Give Up Her Life For CRPS

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…continue reading

Connie France is Still Here and Still Fighting CRPS

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.…continue reading

Don’t Abandon Your Loved Ones With CRPS

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…continue reading