Category: Stories of Hope

Stories about people in the community that are inspirational or that are fighting back against RSD/CRPS

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…

Living with RSD- Never Give Up On Hope

Published on February 6, 2018 under Guest Blogger for RSDSA

By Guest Blogger Brenda Refior Brenda discusses her life before being diagnosed with RSD and all of the things she endured after a traumatic incident. Through all of this, Brenda is able to find hope and encourages readers to do the same. Find out how below. Before I had RSD, I was a strong and happy person who loved life to the fullest. When I was nineteen, I tried out for an Olympic handball team at the Colorado Springs Olympic Training Center. I was accepted and asked to go to the Lake Placid training camp, but this conflicted with my wedding plans. I was young and felt that all of life was ahead of me, and decided not to go…

CRPS Awareness Day 15: Young Chronicle Featuring Courtney

Published on November 15, 2017 under Stories of Hope

Written by Ashley Epping Courtney developed CRPS when she was 14 years old in her right foot; seven years later at age 21, she is now a pre-med student at Gordon College studying biology. Unusual circumstances happened between Courtney’s story and my own. Courtney and I went to elementary school together in 2006; I then changed school districts as we moved into middle school. Three years later, Courtney was diagnosed and informed that there was another young girl with CRPS in our city. Courtney and I were then reunited by CRPS and went on to connect our families, treatments and therapists. She was the first to enter the Chronic Pain Rehabilitation Program at Cleveland Clinic. My family and I traveled…

Knock Out Pain Together – An Inspirational Story of Coming Together

Published on July 18, 2017 under Events

Sarah Phillips-O’Steen is an ally to the CRPS community. Ever since she was 2 years old, she has been witnessing what CRPS/RSD can do to a loved one. Her father, Julian Phillips, has been living in pain since his daughter was toddling around. As Sarah will tell you, he’s always been good at hiding his pain, but she has never known him without it. In January 2015, Julian took a terrible fall that sent him into one of the worst CRPS/RSD flare ups that he had ever experienced. This guided him into full body CRPS. While Julian was spending time in hospitals, fighting the pain, Sarah witnessed some of the grim realities that come with CRPS. Medical staff didn’t know…

The CRPS Wedding Chronicles – Almost There!

Published on March 22, 2017 under Stories of Hope

By Samantha Barrett, Special Events Coordinator Getting closer to the wedding date, Samantha updates everyone on some of the tips she has learned through the wedding planning process with CRPS. What questions do you have for Samantha? She can answer them in the next edition! Hello friends! It’s been a while since I’ve update you on the wedding chronicles. We are just about 3 months out from the big day (I know, crazy, right)? But I’m getting extremely excited, although a tad overwhelmed. Recently, my health hasn’t been the best it could be. My CRPS has gone into occasional flares, but the EDS and POTS have been what is really affecting me. But the EDS contributes to CRPS pain for…

Chronic Pain and Family Responsiveness

Published on March 7, 2017 under Guest Blogger for RSDSA

Written by Laura Lustig, PhD for the RSDSA blog. Originally Titled: "Chronic Pain And Family Responsiveness: Stories Of Courage In The Face Of Unimagined Change." There are many types of chronic pain experienced by people all over the world, many of which have been well recognized and have treatment regimens that are prescribed regularly by doctors and allied professionals. To categorize the pain of Reflex Sympathetic Dystrophy (alternately referred to as Complex Regional Pain Syndrome) as chronic pain is almost a disservice. To begin with, people suffering from this syndrome go through indescribable pain that can strike without warning and become unmanageable. Then, there is the agony of waiting for someone to diagnose it correctly because, unlike so many other…

Judi Riley’s Art of Storytelling with RSD – You Can Do It!

Published on November 8, 2016 under Stories of Hope

Interview Conducted by Samantha Barrett for the RSDSA blog. Judi Riley is one of our fabulous Facebook community members. When we got word of her books with the incredible images that accompanied them, we knew we had to interview her. Judi, who has had CRPS since May of 2009, is an author, illustrator, graphic designer, artist, and mom who is conquering life with RSD or CRPS. After an introductions, Judi and I exchanged emails for this interview. Say "Aloha" to Judi, everyone! Samantha Barrett: You write and illustrate children's books, which is amazing! What inspired you to do that? Judi Riley: I've always been a storyteller and for as long as I can remember, I have doodled pictures to go…

Jodi’s Story of Hope – DRG Stimulator and CRPS

Published on August 30, 2016 under Stories of Hope

The following story of hope is about Jodi, a CRPS Warriors from Ainsworth Institute of Pain Management. "Jodi, like most women, does it all. She is a mom, Nonna, baker, kickboxing instructor, softball player, wife, sister, you name it! Jodi led a very active, very busy and very happy life. On April 17th, 2014 while on vacation, Jodi was involved in an automobile accident that would leave her with a broken ankle. Jodi’s doctor noticed her ankle wasn’t healing properly and there was a lot of sensitivity in the leg near and around the broken ankle that was not normal. Her doctor had a hunch it was Complex Regional Pain Syndrome, or CRPS… a short time later the became progressively worse and the…

Matthew’s Story – Hope and Perspective

Published on August 9, 2016 under Guest Blogger for RSDSA

By Matthew for the RSDSA blog. When a person is diagnosed with CRPS, often times it can be a confusing, complex time. Read what Matthew has gained from his diagnosis and what he hopes for your future. My name is Matthew. I'm a 19-year-old male from Melbourne, Australia. I was just recently diagnosed with stage 3 Complex Regional Pain Syndrome, but to most people's surprise, it was an absolute relief. My injury started 5 years ago as a 14-year-old kid playing basketball. I clashed knees with an opposing player, which I had done hundreds of times before- everyone in sport has. All the usual symptoms of that type of injury came on and lasted weeks: swelling, bruising, dull ache, and…

CRPS Wedding Chronicles: Photographers

Published on July 5, 2016 under Stories of Hope

By Samantha Barrett for the RSDSA blog. I’m back! We’re officially less than a year away from my CRPS wedding. I’m taking you all on this journey with me. Believe it or not, I have shy tendencies. While I used to be able to perform at Celtics games, competitions, and recitals, that was with a group. When the attention is on me, I get quite nervous. Plus, over the past few years, I’ve become more self-conscious. Because of my inability to constantly be active, I’ve gained weight. My teeth have shifted despite having braces and a retainer for over 4 years (thank you, Ehlers-Danlos Syndrome). So, getting my pictures taken isn’t something that puts me at ease. My fiancé also…