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complex regional pain syndrome

Happy Disabiliday – A Letter from A Canadian CRPS Friend

Published on April 25, 2017 under Guest Blogger for RSDSA
This Disabiliday blog was originally featured on Pain Matter's website (Click on the word Pain Matters to see the original article). It was submitted to us by Paula to share with our wonderful #TheTuesdayBurn community. We hope this helps inspire all those living with disabilities, especially CRPS/RSD. "You may remember Paula Orecklin, the inspirational Canadian CRPS patient whom I wrote about in yesterday’s blog post: Let’s Talk To An Inspirational Young Canadian Woman, Paula Orecklin, About CRPS, Sativex, Physiotherapy and Neuroplasticity (There are additional References and Links at the end of this blog post.) This week, Paula sent me a beautiful letter to share with all of you (see below).  Paula’s letter contains a very important message for everyone, on behalf of all people living…
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SPPAN Tracking State Issues- How Can We Help CRPS/RSD?

Published on April 18, 2017 under Call to Action
This blog was originally titled "How SPPAN Went From Tracking A Few State Issues A Year, To Monitoring 1,900- And Changing the Rules in Several States." It was initially posted on Connectivity. You can click here to find it in its original form. At RSDSA's Nashville conference, pain-related legislation was a major hot topic. Some of the most frequently asked questions were about pain legislation and how to move towards change. RSDSA was offered this blog by CQ Roll Call to help explain a little bit of what SPPAN does and how one person can make a difference. How can this help people with CRPS/RSD? How can we move towards progress? The article starts below: "Here’s how one organization (for…
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The Impact of Mindfulness on RSD/CRPS

Published on April 4, 2017 under Guest Blogger for RSDSA
By Guest Blogger Emily Salser Nunez How important is mindfulness and CRPS/RSD? According to Emily, it is crucial. Read Emily's story and then see how being mindful helped her.   Eight months after fracturing my small toe in a simple misstep, I was diagnosed with Reflex Sympathetic Dystrophy (RSD).  I had never heard of this disorder when my podiatrist concluded this was what was causing my excruciating pain and inability to walk.  I knew something was seriously wrong, as over time my foot felt like it was burning and became bluish-black in color.  So, at first, I was relieved that I finally had an explanation for what was happening to me.  But then the podiatrist looked at me with deep…
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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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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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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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