Feeling Good (Again) at CCK’s Pain Week

  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…continue reading

Manual Ligament Therapy (MLT) and RSD/CRPS

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…continue reading

You Have to Be There- Friendship and RSD

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…continue reading

We’re Partnering With The Mighty!

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…continue reading

CRPS Wedding Chronicles: Photographers

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…continue reading

RSDSA’s Final Achilles- Our Swan Song

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…continue reading

CRPS Supporters: You and Me Against the World

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,…continue reading

Team Caroline: A CRPS Story of Hope & Of Giving Back

By Caroline Bert, Guest Blogger for RSDSA Caroline is a CRPS/RSD warrior that has been fighting for about 9 years. Now, Caroline is doing what she can to defy CRPS "limits" and to make a difference in the CRPS/RSD community through fundraisers. My name is Caroline Bert and I am 21 years old. In 2007 I broke my left wrist, when the doctor took my cast off my arm was crooked. After 11 months of many doctors ruling things out, my diagnosis was Reflex Sympathetic Dystrophy. Dr. Neil Kirschen treated me by a series of 3 stellate ganglion nerve blocks , and then on the first treatment of the second series I woke up with full relief. I went into…continue reading

A Journey with CRPS/RSD Through the Gift of Music

  By Guest Blogger Shannon L. Everyone has that one thing that gets them through their CRPS/RSD battle. For Shannon, it is music. Read her story below. “WOW” is all I can say as I sit back and reflect on the past 26.5 years in dealing with RSD (yes, I know the correct term is CRPS but I still call it RSD).  In the midst of all the changes in my life as a result of RSD, the one constant in my life has been my music and how it has helped me deal with the pain. I have been wondering how to even start this blog, as so much has happened over 26.5 years - all the doctor appointments,…continue reading

The Friend Who Didn’t Tell Me About Their Chronic Illness

By Melissa Lovitz, Guest Blogger for RSDSA Dear Friend, I think you didn’t tell me about your chronic illness because I didn’t create a space for you to share with me more about your whole self. I wasn’t fully open and honest with you either – I’m sorry. Living with an invisible illness isn’t easy, and sometimes the shame and stigma that is associated with our conditions hinders our ability to be forthcoming about this important aspect of our lives. But, our silence perpetuates the invisibility of our illnesses – just saying. I think you didn’t tell me because you’re so used to, and good at, managing your condition on your own.  I am too! I wonder if you thought…continue reading