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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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Long Island and CRPS- RSDSA’s New Walk

Published on August 16, 2016 under Events
By Samantha Barrett, Special Events Coordinator There is a new event coming to the RSDSA community. I have been particularly excited about it since I’ve been working with the three wonderful women from the walk committee for months now. Millie, Debbie, and Beth all live with CRPS. They hadn’t known each other very well until this walk started to get planned. These three women have been working day in and day out to ensure that the Long Island CRPS/RSD Awareness Walk is a success. Every two weeks, we have a giant conference call and I get to hear about everything they have planned for September 10, 2016 in Eisenhower Park. It is an event not to be missed. Because I…
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Matthew’s Story- Hope and Perspective

Published on August 9, 2016 under Guest Blogger for RSDSA
By Guest Blogger, Matthew When a person is diagnosed with CRPS, often times it can be a confusing, complex time. Read what Matthew has gained from his diagnosis and what he hopes for your future. My name is Matthew. I'm a 19-year-old male from Melbourne, Australia.  I was just recently diagnosed with stage 3 Complex Regional Pain Syndrome, but to most people's surprise, it was an absolute relief. My injury started 5 years ago as a 14-year-old kid playing basketball. I clashed knees with an opposing player, which I had done hundreds of times before- everyone in sport has. All the usual symptoms of that type of injury came on and lasted weeks: swelling, bruising, dull ache, and redness. 4…
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Feeling Good (Again) at CCK’s Pain Week

Published on August 2, 2016 under Youth
  By Sammie Barrett Last year, you may recall that I had my very first camp experience at the Center for Courageous Kids in Scottsville, Kentucky. I liked it so much that I went back to represent RSDSA again this year! If you thought the inaugural year was amazing, wait until you hear about this year. Thank you to The Coalition Against Pediatric Pain for allowing me to tag along with you. Another thank you to the US Pain Foundation and Rock Out to Knock Out RSD for co-sponsoring this camp, too! Last year, we had about 19 children total, which was a great first year! This year, we had 49 children total and then parents/guardians. We completely filled the…
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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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We’re Partnering With The Mighty!

Published on July 12, 2016 under Bully Free Zone
CRPS/RSD, RSDSA, and The Mighty (Oh My). We are so excited to announce that we have a new found partnership with The Mighty. This partnership will bring RSDSA's resources in front of The Mighty's wide-reaching readership. We will now have a growing home page on The Mighty and will appear on many stories on the site! How exciting is that? The Mighty is a story-based health community focused on improving the lives of people facing disease, disorder, mental illness, and disability. More than half of Americans are facing serious health conditions or medical issues. They want more information. They want to be inspired. The Mighty publishes real stories about real people facing real challenge (like CRPS). Much like our own…
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CRPS Wedding Chronicles: Photographers

Published on July 5, 2016 under Stories of Hope
By Sammie Barrett, Special Events Coordinator I’m back! We’re officially less than a year away from my CRPS wedding. I’m taking you all on this journey with me. Believe it or not, I have shy tendencies. While I used to be able to perform at Celtics games, competitions, and recitals, that was with a group. When the attention is on me, I get quite nervous. Plus, over the past few years, I’ve become more self-conscious. Because of my inability to constantly be active, I’ve gained weight. My teeth have shifted despite having braces and a retainer for over 4 years (thank you, Ehlers-Danlos Syndrome). So, getting my pictures taken isn’t something that puts me at ease. My fiancé also gets…
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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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CRPS Supporters: You and Me Against the World

Published on June 21, 2016 under Guest Blogger for RSDSA
By Guest Blogger Shannon Sometimes, it just takes one person to make a significant difference in the life of someone with CRPS/RSD. For Shannon, that person is her mother. See how Shannon's mom has helped her on her CRPS/RSD journey and how music tied them together even more.   I remember growing up and hearing the song “You and Me Against the World” on the radio. At the time, I did not appreciate all that it stood for; however, I do now.  This could be yet another theme interwoven in my 26.5-year journey dealing with RSD, as this is how it has been for my mom and me.  She has been by my side helping me to fight the battle,…
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