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Ketamine Treatment Centers- Carolyn’s CRPS Treatment Story

Published on March 28, 2017 under RSDS General Info
Please meet Carolyn! Carolyn has been suffering with CRPS for many years now and we are so happy to share her success story.  After undergoing Ketamine infusions at Ketamine Treatment Centers, Carolyn has had a significant improvement in her quality of life and she was gracious enough to share her story and experience with us!     For any questions, please call us at 888-566-8774 or email us at info@ktcpartnership.com Click here to visit Ketamine Treatment Centers' Website. See you in Nashville!!!!   View Carolyn's Ketamine Treatment Centers Story Below: https://www.youtube.com/watch?v=VVgZVvNU3pw
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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…
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You Know You’re a Hospital Kid When… Life with CRPS

Published on March 14, 2017 under Guest Blogger for RSDSA
By Guest Blogger, Melissa Lovitz This piece about being a hospital kid, especially one with CRPS/RSD, was originally posted on The Mighty. When you’re a spoonie you spend a lot of time in the hospital. About 10 years ago, I spent more than 10 cumulative weeks of my freshman year of high school either in the hospital or at doctors’ appointments. During my middle and high school years, my experiences with reflex sympathetic dystrophy syndrome (or CRPS) landed me two six-week stays at Children’s Hospital of Philadelphia, two 10-day stays at Boston Children’s Hospital, and more doctors’ appointments than I can realistically count. When I was in high school, most of my inside jokes were with physicians who liked to dance every morning. I got…
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Chronic Pain and Family Responsiveness

Published on March 7, 2017 under Guest Blogger for RSDSA
By Guest Blogger: Laura Lustig, PhD 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 types of chronic…
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Rare Disease Day 2017: A Rare Game for the CRPS/RSD Community

Published on February 28, 2017 under Events
Today is February 28. It is Rare Disease Day!  This is a wonderful day for educating people about rare diseases and conditions, including Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy (CRPS/RSD). This blog is a little different than what we typically do. We want to help educate people about CRPS/RSD, while helping people find different resources on our website! What could be better than to organize a scavenger hunt?! You will have until Sunday, March 5, 2017 at 11:59 p.m. EDT to complete this scavenger hunt and email your responses to SBarrett@rsds.org. People with 100% correct responses will be entered to win an RSDSA travel mug. The winner will be chosen via a random selection tool online and will be announced…
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How RSD Potentially Stole My Dreams- Cope With RSD/CRPS

Published on February 21, 2017 under Guest Blogger for RSDSA
By Guest Blogger Tatiana Being diagnosed with RSD/CRPS is challenging at any age. Being young and going through the challenges of school can make it hard to cope for children and teenagers. Tatiana writes about her experience being diagnosed with RSD/CRPS, her stolen dreams, and how she has ultimately learned how to cope. When I was a young girl, only five years old, I had crazy dreams. Every single time someone asked me what I wanted to be when I grew up, I’d smile, and tell them that I was going to be a dancer. A ballet dancer, to be specific, though I often dreamed of ballroom dancing. Getting to wear a ballgown, heels, and having a handsome gentleman’s hands…
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Painting CRPS: A Nurse’s Reflection of the Bible and Its Correlation to CRPS

Published on February 14, 2017 under RSDS General Info
Matthew 6:26 inspires artwork of a nurse living with Complex Regional Pain Syndrome (CRPS). This blog was originally posted on this website. Alyssa Skillman, RN, BSN had the wonderful opportunity to create a canvas and acrylic painting for the Boston Scientific Neuromodulation headquarters in California. They have a program that allows their patients with implanted devices to create artwork and send it in to be hung at the corporate office. Alyssa stated, "My rep knew I like to paint so she was excited to get me into the program. The company sent me the painting supplies and guidelines (for consistency purposes). This is what I created and the meaning behind it." Thank you for the opportunity to share my artwork.…
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When Someone Offers You a Cure for CRPS

Published on February 7, 2017 under Opinion
All people that have been diagnosed with CRPS/RSD want in this lifetime is a cure. That’s why so many of us focus on awareness, awareness events, fundraising, and even on keeping up with the latest research. There is nothing more we want than to be the “old” us- the ones that can hop, skip, and play with our dogs, children, grandchildren, nieces/nephews, and so on, without being in excruciating pain and facing all of the consequences that come with it (if we can even get our bodies to move in those ways).  Please note everything in this article is my own opinion. Another common thing is that all of us have been told that someone has a cure. Most of…
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Music & Me- My Way of Coping with CRPS Pain

Published on January 31, 2017 under Opinion
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.…
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The Importance of People- Friends with CRPS

Published on January 24, 2017 under Call to Action
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…
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