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CRPS Awareness Day 9: My CRPS and DRG Story

Published on November 9, 2017 under Guest Blogger for RSDSA
Writen by Marcia Nolting for the RSDSA blog. Treatments for CRPS or RSD vary per person. We would like to note that you should always consult with your medical team about treatment options. For Marcia, DRG was the right answer. See what she was able to do due to DRG. My name is Marcia and I've had RSD for almost ten years and as of writing this, am post Abbott DRG stimulation surgery 4 months. A decade ago, I tripped over a step and thought someone had cut my left ankle/foot off, it hurt so bad. The pain was instant, continuous and unrelenting. The ER thought I was insane and sent me home with what they termed a "sprain" and…
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CRPS Awareness Day 8- The Young Chronicle with Vicky

Published on November 8, 2017 under Guest Blogger for RSDSA
By Ashley Epping The Young Chronicle is a new blog series started by Ashley to get insight on CRPS/RSD from young adults. Each blog will offer insight to the unique challenges that young adults with chronic pain face and their ways of coping, healing, and continuing on. Vicky is a 25 year-old from Illinois who was diagnosed with CRPS nine months ago. Her original injury was a trauma to her foot while playing soccer. As she started seeing doctors and making trips to the emergency room, her pain was dismissed as a bruised bone. Once she was accurately diagnosed with CRPS, the doctor said to her “If you don’t act on this fast, you will be disabled for the rest…
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CRPS Awareness Day 7- Ketamine Treatment Information

Published on November 7, 2017 under Guest Blogger for RSDSA
By Guest Blogger Allison Wells, MD Dr. Wells shares her take on ketamine treatment information for CRPS. She offers insight to what she thinks works best, the effects CRPS can have on a person, and the impact of infusions. Please note that this is Dr. Wells' opinion and we advise that all members of the CRPS community consult with their doctor about the best options for them. CRPS / RSD can cause intense, chronic pain and can be debilitating. Many CRPS patients have lost jobs, friends and family relationships due to their illness. Many have been forced to give up activities they love and most also suffer with anxiety and depression related to their condition. Physicians and researchers are still…
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CRPS Awareness Day 5: My CRPS Story

Published on November 5, 2017 under Guest Blogger for RSDSA
By Guest Blogger Suzanne Stewart Suzanne is an active advocate for all things chronic pain. She is the voice behind social media sites like RASEforCRPS and is an active ambassador for the US Pain Foundation. Suzanne also helps RSDSA with our awareness and fundraising efforts. Read her story below. My name is Suzanne and I have been disabled since 1999; 1st from PTSD and stage two chronic kidney disease. In August 2002, I was in a motor vehicle accident which caused multiple injuries, including a Traumatic brain injury, hearing loss (I acquired 2 hearing aids), vision lessened & eye issues, many surgeries, & 3 years of TBI rehab. I still suffer with short term memory loss and other effects from…
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CRPS Awareness Day 3: The Media Coverage of Chronic Pain

Published on November 3, 2017 under Guest Blogger for RSDSA
By Guest Blogger Melissa Lovitz Melissa initially featured this blog on her blog site. The post was called: The Media Coverage of Chronic Pain is Oversimplified. Read what Melissa's thoughts are on the media's coverage of RSD and chronic pain. You can also click here to see her blog.   The Washington Post recently published an article about CRPS titled “The Strange Pain that can Overcome Kids, Especially High-achieving Teenage Girls.” The article was shared with me by someone who has never experienced a chronic, physical illness and believes that you can actually have unlimited spoons. The premise for sharing this article was simply, “I thought it could be interesting”. Here’s the thing about living with CRPS: it’s not interesting, it is…
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CRPS Awareness Day 2-Burning Nights CRPS Support in the UK

Published on November 2, 2017 under Guest Blogger for RSDSA
By Guest Blogger Victoria Abbott- Fleming Our friend, Victoria, runs a support network for people with CRPS in the United Kingdom (UK). We asked her to write up a little bit of what Burning Nights does. Here is what she wrote. Thank you, Victoria! Burning Nights CRPS Support finally began and went live in September 2014 and we became a registered UK charity in April 2016. At the time of it being set up not a single UK charity or website existed that was dedicated to raising awareness & supporting people affected by Complex Regional Pain Syndrome (CRPS) not only those living with CRPS but including the carers, family members, friends and loved ones. There was just insufficient and no…
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CRPS Awareness Day 1: A Glimpse Into My Life

Published on November 1, 2017 under Guest Blogger for RSDSA
By Guest Blogger Tracy Coval Tracy Coval gives RSDSA a look into her life with CRPS and dystonia. See what she has done through her journey. Note this was initially posted on her blog, which can be found at this link (click here). Some of the images may be too graphic for some readers. I was first diagnosed in 2002 with Complex Regional Pain Syndrome (CRPS/RSD) when I was 11 years old after a running injury. I was running in gym class and twisted my left ankle in. When I told the gym teacher I couldn’t run anymore, he wouldn’t believe me and had me keep going. The pain kept progressing, and I saw an orthopedist who diagnosed me with…
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A Halloween Tale for CRPS With a Fun Message

Published on October 31, 2017 under Events
By Samantha Anderson ‘Twas the day of Halloween, and all through RSDSA, Anticipation was occurring, for another important day. While others prepared costumes of Wonder Woman and Zeus, Samantha was writing a Halloween blog, although for another use. Tonight, she would dress as a unicorn in full, To pass the trick or treaters candy by the bagful. The clock will strike midnight, and a new month will arrive, Just in time for a new campaign to thrive. The first of November means it is the time, To shed some awareness through story and rhyme. A new blog will be posted every day, For members of the RSDSA community to relate to in some way. Tips, tricks, and stories we hope…
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RSDSA: The People and Programs Behind the Website

Published on October 24, 2017 under Call to Action
By Jim Broatch, MSW, Executive Vice President, Director With CRPS/RSD Awareness Month approaching, we wanted to feature a message from our Executive Vice President and Director, Jim Broatch. So many people rely on RSDSA for resources. Here at RSDSA, we want to be able to best help you and best support you. We want to create a hopeful environment. Every day, we look to see what we can do better for our community. Jim Broatch too the time to write up a bit of what we do daily. We will continue to move towards progress. Please join us in shedding more light on CRPS/RSD, not only in the month of November, but every month of the year. I would like…
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A Nurse’s Fight Back Against CRPS – Impacting Other Nurses

Published on October 17, 2017 under Giving Back
Written by Nurse Beth Seickel for the RSDSA Blog When RSDSA was asked to be a part of ASPMN-LI's 16th Annual Pain Conference, we were happy to join. Nurse Beth, a CRPS warrior, was one of the first people we wanted by our side during this. She was kind enough to write about her experience as she is a nurse fighting CRPS while also educating others. RSDSA was invited to be a part of the American Society for Pain Management Nursing-Long Island Chapter’s (ASPMN-LI) 16th Annual Pain Conference at the DeMatteis Center for Cardiac Research and Education in Greenvale, New York, an annex of St. Francis Hospital on Long Island. ASPMN-LI's mission is "to advance and promote optimal nursing care…
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