CRPS, a New Four-Letter Word from Hell

Published on June 5, 2019 under RSDS General Info
Written by James Doulgeris for the RSDSA blog. August 30, 2018 is the first time I ever heard the letters CRPS, and they are four letters I can assure you that you will never want to hear preceded by “You have …” as I did. This is not my story, but one about the challenges of sufferers of little understood orphan diseases told by a healthcare professional. CRPS stands for Complex Regional Pain Syndrome, formerly known as Reflex Sympathetic Dystrophy, or, RSD. There is another, more sinister, name for it, “The Suicide Disease.” I’ll get to why shortly. It's now ten months later and I push through day by day. In my work as a healthcare executive and now life…
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The Light Side of Pain

Published on May 29, 2019 under RSDS General Info
Written by Maria Martinez for the RSDSA blog. I am 50 years old and have been married 30 years.  I have a beautiful 27-year-old daughter and a 25-year-old son. They both decided to get married within 6 weeks of each other last year. One gave us a months’ notice and the other 2 days. As a wife and mother, I could not be happier about their choice of spouses. I adore my husband and had so many plans for this time in my life. All those plans were waylaid in 2008 after a cervical mitre.  The neurosurgeon explained that my neck is literally not put together correctly and that these issues were inevitable. The major nerve bundle going to my…
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An Interview with Ride For Warriors’ Eric Moyal

Published on May 22, 2019 under RSDS General Info
Written by Lauren Bentley for the RSDSA blog. As the editor of the RSDSA Newsletter, there are many aspects of the job that I love such as reading about the latest research studies, promoting community awareness events, learning about alternative methods for coping with pain; but perhaps my favorite part is making connections with other members of the RSDSA community and listening to their stories. I recently had the privilege to interview Eric Moyal, an energetic, enthusiastic young adult who recently earned his masters’ degree and works in fundraising for Brandeis University. He is also the brother of a CRPS Warrior. Throughout our conversation, there seemed to be one theme that prevailed above everything else: Eric really loves his sister…
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CDC Issues Clarification of Guidelines for Prescribing Opioids for Chronic Pain

Published on May 15, 2019 under RSDS General Info
Written by James W. Broatch, MSW, RSDSA Executive Vice President, Director Three years after the Centers for Disease Control and Prevention (CDC) released its Guidelines for Prescribing Opioids for Chronic Pain, which was intended for primary care providers (PCPs), three of the authors recently wrote an article in the April 24th issue of the New England Journal of Medicine acknowledging untoward consequences related to the misapplication of the Guidelines. For the past three years, RSDSA's staff, Board of Directors and I have struggled to help individuals with Complex Regional Pain Syndrome (CRPS) and other chronic pain syndromes deal with the misapplication of the Guidelines. Individuals on long-standing high-dose opioid therapy, who reported being abandoned by their PCPs or pain specialists,…
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Those Who Say It Cannot Be Done Should Get out of the Way of Those Who Are Doing It

Published on May 8, 2019 under RSDS General Info
Written by Wendy Kahn, MD for the RSDSA blog. I’ve always been very active, at least until one day in the fall of 2000, when I got a stick stuck in my rollerblade when I stood up to start my ride. I decided to have a controlled fall, but the impact on my sacrum turned out to be anything but controlled. During the next three years, I developed multiple cases of pneumonia, until the fifth pulmonologist figured out that I had twisted my spine, kinking one lung. In 2003, a nerve in my left calf became painful, limiting my walking.  My twisting deformity increased steadily until 2005 when suddenly I had such excruciating pain in my legs - first left,…
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A Patient’s Experience Inside the Neurologic Relief Center in Fayetteville, AR

Published on May 1, 2019 under RSDS General Info
Written by Angie Jones for the RSDSA blog. Four years ago, I was happy, healthy and pain-free. I owned my own business, volunteered in dog rescue, traveled with my family, and enjoyed my life. I had driven three hours to Kansas City and was standing in line when my blood pressure tanked causing me to collapse, spiral downward and was left with an ankle that required reconstruction. Within days my casted foot had swollen, turned dark purple and felt as if it was on fire. The pain was incredible. Nothing helped. Ice, pain meds, elevation… there was no relief. Although I shared my concerns with my doctors, they failed to recognize the symptoms of Complex Regional Pain Syndrome (CRPS). When treated…
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Baby Steps

Published on April 24, 2019 under RSDS General Info
Written by Tatum Bunnett for the RSDSA blog. “Baby steps” has been my motto for half of my life. At the age of nine, I started experiencing intense pain in my feet and lower legs. My doctor discovered that I had a congenital birth disorder in which several of my bones in my feet and ankles were fused together. First, a series of casts were used to non-surgically correct the problem; I spent 12 weeks of my fifth-grade year in a wheelchair with casts on both legs. Unfortunately, as a result of this treatment, I developed Complex Regional Pain Syndrome (CRPS). It was then determined that I needed a series of surgeries to correct the original foot deformity, but my CRPS…
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Introducing Jeri Krassner RSDSA’s Special Events Coordinator

Published on April 10, 2019 under RSDS General Info
So, who am I, Jeri Krassner, formerly an NYC gal working for New York City Hemophilia Chapter, now Special Events Coordinator for RSDSA. I work for Jim and you. And I am a fundraiser and that means I ask people for money, which is hard, but there are two things to remember that make it easy. You are not asking for yourself. You are not asking your family, friends, neighbors and community to help pay your VISA bill or make a car payment. You are asking people to give because you are passionate about the cause, it’s important to you and giving = doing good. I say when someone gives me any amount from $2,500 to $10 Thank You –…
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We want to Introduce you to Phillip Robert, Chief Encouragement Officer of the Burning Limb Foundation

Published on April 3, 2019 under RSDS General Info
Please watch this short video of Mr. Phillip Robert who spoke at our conference in Fayetteville, AR as he tells his story and introduces his Foundation which is helping individuals with CRPS and others suffering with chronic pain.  You will not disappointed: To learn more about The Burning Limb Foundation, please visit their website #TheWednesdayBurn
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Independence Redefined

Published on March 27, 2019 under RSDS General Info
By Elisa Friedlander Hello dear readers! This post below is from an article I wrote a few months ago. It was published in the Inner Peace Column of our local newspaper, the Ashland Tidings. Enjoy, and please pass on! Click here for the link to her article. Recently, during a dinner outing with my wife and another couple, I mentioned my plan to try driving again (it's been several years since disabling neck pain and other medical problems made driving a thing of the past). One friend responded, "Great! You can finally be independent!" There was no ill-intention in her comment. Still, it felt like an eyelash jabbing my cornea. At the time, I just nodded. My "response" came later…
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