Music & Me- My Way of Coping with CRPS Pain

By Samantha Barrett, Special Events Coordinator We all have our ways of coping with CRPS pain. I've been using music to get me through everything in my life, especially CRPS. It's time for me to share with you. For as long as I can remember, I’ve been singing along to music, making up my own songs, and dancing (even in a wheelchair) to anything and everything that comes on the radio. For a vast majority of my life, I was a dancer, a dance teacher, and a dance team coach. Everyone in my family played an instrument or could sing (not me though, I can’t get my voice to cooperate). I’ve always been on more of the A&R/music business side.…continue reading

The Importance of People- Friends with CRPS

By Samantha Barrett, Special Events Coordinator I started my CRPS journey when I was a teenager. Of course, then, it was known as RSD, but a lot has changed over the years. I remember being diagnosed with “Reflex Sympathetic Dystrophy,” which instantly made me think that the doctor thought I was faking to get people’s sympathy. But, I soon found out it was so much more. Doctors didn’t give me much hope. They actually told me I would never walk again. But, I’ve always been a determined little monster. I did everything in my power to battle the beast that is CRPS/RSD. Physical therapy, acupuncture, medications, desensitization, and anything that was in experimental phases that I possibly could. But, there…continue reading

The Club No One Wants- The CRPS Club

By Guest Blogger Jamynne Bowles Jamynne details her life, from being a young shy girl, to becoming a paramedic that suddenly joined a club she never asked to be in- The CRPS Club. What has life taught Jamynne? What is to come for The CRPS Club? Growing up in Northern Virginia, I remember being the shy girl who always wanted to fit in.  Overweight and pudgy, I was bullied a fair amount during elementary school.  You could say I was that proverbial “fat girl” that no one wanted to play with.  Unless, of course, it was kickball.  I had a strong leg, so generally I was one of the first few picked.  But if we played Red Rover, tag, or…continue reading

Just Wanted You to Know: CRPS PRISMA Trial

Pain Reduction by Inducing Sensory-Motor Adaptation: CRPS PRISMA Trial In research funded by the RSDSA, scientists at the University of Bath in England are investigating a new treatment for CRPS that targets perception of and attention to the affected limb and surrounding space.   People with CRPS often report that the size and shape of their affected limb feels different to its true size or shape. People with CRPS also show changes in their attention to the affected limb and surrounding space. These changes to body perception and attention are reminiscent of symptoms that can arise after damage to certain parts of the brain. It has been suggested that pain and other symptoms of CRPS might arise as a result…continue reading

New Year, New RSDSA Goals – Helping the CRPS Community

 By Samantha Barrett, Special Events Coordinator Welcome, 2017! So many of us were ready for a new year. With the new year comes expectations of resolutions, bettering oneself, and change overall. Not only is RSDSA no different than everyone else, but we also want to help people reach their goals/resolutions and then some! As you may have seen in our emails, we have a set of initiatives for 2017 here at RSDSA. They include: Co-sponsoring Camp for Courageous Kids- a camp for youngsters in pain for our third year Continuing to transform lives with our "Treating the Whole Person Conferences," the next one is scheduled for Nashville in April 2017, as well as utilizing our live-stream Implementing our first statewide…continue reading

Sing a Song- Getting Vocal About RSD This New Year

By Guest Blogger Shannon Leidig Everyone has a song to sing, with every song being our own stories. Shannon writes about her song, what it means to sing it, and why it is important to hear the songs of others, whether they have RSD / CRPS or not. Oh my, time surely does fly – you know the old saying the older you get the quicker it goes? So true.  I can hardly believe that another year is almost done and gone and I can honestly say good riddance – get gone and soon!  While there have been many blessings there have been a heck of a lot of upside downs/inside outs craziness that make me just want to smack…continue reading

From One Family to Another: A Pediatric CRPS Journey

By Guest Bloggers Bobby and Lauren Gellert The Gellert's daughter, Zoe, has faced CRPS head on. She has been inspired to do some great things. See what Zoe and the Gellert family are doing and what they learned about pediatric CRPS. “Dad! You need to come home. The doctor said nothing is broken or torn, but I still can’t put my foot on the floor. It feels like someone is sticking a knife through my heel and it’s burning inside”. These were the words of our 11-year-old daughter, Zoe, who the day before was involved in a crush injury to her right ankle. Zoe was immediately non-weight bearing and was describing pain symptoms that made no sense based on the…continue reading

CRPS & GI – Frustrations From a Nurse’s Perspective

By Guest Blogger Beth Seickel, RN, BSN CRPS and GI issues may have some correlation. Nurse Beth details her perspective on this issue as both a person living with chronic pain and as a nurse. How can we prepare ourselves for hospitals? How can we educate the staff? As we educate the world around us, here is her story: So here goes! The frustration of living with CRPS spills over into everyday life we would all agree. Yet, speaking as a CRPS patient and Nurse, I have gained a unique point of view both as the health professional and now as the patient. Yet, my vulnerability as a patient was tested from an ER visit for acute abdominal pain and…continue reading

Fear of Distance- RSD / CRPS and The Journey Away from Home

By Guest Blogger Rachel Ehrenberg Rachel is a member of the RSD / CRPS community that had the opportunity to be a part of DCP, or the Disney College Program. She details what it is like to be so far away from home, for the first time, with CRPS. 997.2 miles. 997.2 minutes. 16 hours. These are just numbers that form a distance to most people. But when you are living with a chronic illness, 997.2 miles is a long way from home and your comfort zone. That’s exactly what it was for me. In January, I packed up my things and moved from South Jersey to Orlando. I was beginning a journey of a lifetime and starting the Disney…continue reading

Magic Wand- Experiences Living with CRPS

By Guest Blogger Alessia Zen A story of living with CRPS (the struggles and triumphs), the hope for the future, and what the community truly needs. Ever the dreamer as an eleven year old little girl I wrote my life goals on a yellow post-it note, proudly signing it with juvenile cursive writing- in my mind by signing with a "signature" this became official just like a real-life grown up. I wrote that I was going to become a doctor/archaeologist (emphasis on the slash, in my mind these careers were not mutually exclusive), challenged myself to read one thousand books, hoped to write a novel, promised to travel the world seeing all of its wonders, and that I would discover…continue reading