Donate

reflex Sympathetic Dystrophy

You Want to Write About CRPS, But Don’t Know What to Say

Published on May 16, 2017 under blog
By Special Events Coordinator, Samantha Barrett To write about CRPS is to expose a part of yourself that is vulnerable, but so important when it is shared. Members of our community have voiced an interest in writing about CRPS, but didn't know where to start. Here we go! Writer’s Block. Anxiety. Fear. Overwhelming thoughts. All of this contributes to an issue that I hear about all to often. Members of the CRPS community want to write about their experiences, both good and bad, but it can be incredibly difficult to find a starting place. How can you get past the barriers to write about your own experience, whether it’s for public viewing or for your eyes only? Finding a starting…
continue reading

A Thorn In the Flesh-A Chronic Pain Journey

Published on May 9, 2017 under Guest Blogger for RSDSA
By Guest Blogger Gabe King This blog was originally featured on Gabe King's blog site Treasures on the Sand. This blog was submitted to us by Mr. King with full permission to share his chronic pain journey.   For many of us with chronic pain, we can only remember suffering. It can be very hard to think of the times that were pain-free, living our lives like normal human beings. However, this is not the path Our Heavenly Father has in store for us, for He has a greater purpose at hand. Though this is the case, it can still be a difficult journey, walking through life with what the apostle Paul referred to as a "thorn in the flesh."…
continue reading

Managing RSD/CRPS As A Chronic Illness from a CRPS Warrior

Published on May 2, 2017 under Opinion
By Guest Blogger Emily S. Nunez Emily has been living with CRPS/RSD and learning how to best manage it. Here, she includes her tips and tricks to control your CRPS/RSD as a chronic illness. She finds the following tips helpful for her own pain.   The reality of living with RSD/CRPS is that it is a lifelong chronic illness, which requires management and attention to avoid exacerbating symptoms.  I consider myself very fortunate to have most of my RSD symptoms under control at the moment.  But I do get flare ups of pain and swelling from time to time, and I’m always aware of how my affected foot is feeling in order to prevent symptoms from getting out of control. …
continue reading

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…
continue reading

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…
continue reading

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…
continue reading

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
continue reading

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…
continue reading

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…
continue reading

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.…
continue reading