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complex regional pain syndrome

The Club No One Wants- The CRPS Club

Published on January 18, 2017 under Guest Blogger for RSDSA
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…
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New Year, New RSDSA Goals – Helping the CRPS Community

Published on January 3, 2017 under Call to Action
 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…
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Fear of Distance- RSD / CRPS and The Journey Away from Home

Published on December 6, 2016 under Guest Blogger for RSDSA
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…
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Don’t Judge a Book By Its Cover- What CRPS Taught Me

Published on October 18, 2016 under Guest Blogger for RSDSA
By Guest Blogger Shannon Leidig Greetings everyone!  Happy Autumn! I so cannot believe we are almost to the end of October, which means the cold and snow of winter is just around the corner. I for one so am not NOT ready for that.  I truly hope everyone is doing well.  I have been meaning to write another blog for quite a while; however, this thing called LIFE just happened to get in the way – as this was not the blog I had planned to write.  That being said – there has been a situation that has happened that has totally rocked my world and that [is why] I feel I need to write this one titled: “Don’t Judge…
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RSDSA’s Longest Day of Golf- Meet Zach

Published on September 26, 2016 under Events
Interview Conducted by Samantha Barrett Monday, September 26 is RSDSA's very first Longest Day of Golf. We wanted to find someone that would represent us in a great way. That's when Zach Baron came along. As this is being posted, Zach is trying to complete as many holes of golf as possible for RSDSA. People have been making pledges per hole and one-time donations to make this event a success. The more holes of golf Zach completes, the more fundraising is done for RSDSA. We interviewed Zach before he took to the green. Samantha Barrett: Hi Zach! Thank you for participating on behalf of RSDSA for the Longest Day of Golf. Can you tell us a little bit about yourself?…
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Jodi’s Story of Hope- DRG Stimulator and CRPS

Published on August 30, 2016 under Stories of Hope
Read this story of hope about Jodi, who lives with CRPS, 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 diagnosis…
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Being Told to Keep My CRPS Quiet

Published on August 23, 2016 under Bully Free Zone
=== By Samantha Barrett Sometimes, people can be downright mean. When awareness is a crucial part of living with CRPS/RSD, what do you do when someone tells you that you should keep quiet about it? I’ve had CRPS for just about 10 years now. I was diagnosed as a pediatric patient. Being a teenager, I got easily irritated when people didn’t know what CRPS/RSD was or why I was still on crutches. People wrote posts on MySpace about me, calling me a faker. I lost a lot of friends because they didn’t understand why I couldn’t go to the movies or have sleepovers. To say I was angry would be an understatement. But I didn’t want to let that anger…
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Manual Ligament Therapy (MLT) and RSD/CRPS

Published on July 26, 2016 under Guest Blogger for RSDSA
By Arik Warren Gohl LMT, MMLT   Part 1- A Short History of Manual Ligament Therapy (MLT) In 2003 when I first began creating Manual Ligament Therapy (MLT), it was for this simple but important reason… Something different had to be done in the approach of helping those with pain. In those days as a medical manual therapist working in a Physical Therapy clinic, I became frustrated with the amount of time it was taking for people to heal while getting multiple therapies such as PT, Chiropractic, Massage , and anti-inflammatory injections. Inspired by an old chiropractic technique called the “Logan Basic” that a good friend, a Chiropractor named Dr. John Mishko had shown me, I decided to do something…
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You Have to Be There- Friendship and RSD

Published on July 19, 2016 under Guest Blogger for RSDSA
By Shannon Leidig, Guest Blogger "You have to be there, you have to Without you I drown in the deep Too far, too far from land The waters drag me down I reach for your hand" From the Musical Kristina I remember several years ago driving to my weekly massage appointment, listening to the Broadway channel on Sirius XM, when all of the sudden, out of the blue, came a song that I had never heard, from a musical I had never heard of.  I remember driving and sobbing/crying as this song sucker punched me in ways that I had thought about over my 26.5-year journey with RSD, but could not quite find the words. This song did it. I…
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RSDSA’s Final Achilles- Our Swan Song

Published on June 29, 2016 under Events
By Samantha Barrett, Special Events Coordinator This past weekend, RSDSA participated in their final Achilles Walk. We have been doing the Achilles Walk as an organization for over a decade. The event has run its course. We have decided we need to move on and change things up a bit for the CRPS/RSD community. For me personally, this was my third Achilles Walk. I attended my first Achilles when I started interning for RSDSA. That first year was absolutely beautiful. It was my first time staying in New York and seeing Central Park. I met so many people and made so many lifelong friends. It was amazing to me that, after 8 years with CRPS/RSD, I was still learning so…
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