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CRPS From An Outside Perspective- Interview With a Husband

Published on August 15, 2017 under Opinion
By Samantha Anderson, Special Events Coordinator After several requests for my husband and I to give a bit of our story and let everyone know how things work with us, I decided to interview him to find out what he thinks about CRPS/RSD as a person that lives with it daily without physically experiencing it. 10 years ago, I started dating my now husband. We were each 14 years old. This was less than a year after my CRPS/RSD diagnosis. As a matter of fact, I was still on crutches when I started dating the boy with the blue mohawk. At that point, I didn’t know the extent that CRPS/RSD would actually impact my life. I know the doctors told…
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How DRG Differs from SCS- The Idea of Pleasant Stimuli in CRPS

Published on August 8, 2017 under RSDS General Info
By Guest Blogger Dr. Chu Dr. Chu details studies that have been done, treatments that have been done in the past, and findings for DRG versus SCS. As most patients suffering from Complex Regional Pain Syndrome know, long-term data regarding standard treatment for this oftentimes debilitating condition has been mediocre at best. In fact, most of the usual treatment available, until recently, have been extremely limited. Nerve-specific medications can have intolerable side effects and low responder rates. Injections such as sympathetic nerve blocks are typically short-lived. Even more advanced therapeutics such as Dorsal Column Stimulation (traditional SCS) have mixed results with patients reporting unwanted areas of stimulation or loss of pain relief over time. The idea behind neuromodulation is simple,…
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RSD Is An Angry Ocean- Why It’s Okay to Be Angry

Published on August 1, 2017 under Guest Blogger for RSDSA
By Guest Blogger Sara We love to post uplifting stories about people living with CRPS/RSD. But, what about the moments where it is nearly impossible to be positive? Do we let that go unnoticed, or should we reach a point of acceptance that RSD comes with a range of emotions. Sara covers her feelings on RSD and how it is like an angry ocean.   Each day, I face the endless ocean, scanning the horizon, tipping my head to the sky searching for signs of storms.  Will the currents be calm, allowing me to drift easily under a sunny sky with my aching and ancient bones; or will the storms clouds gather, thunder booming, lightning splitting the horizon with the…
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“A Happy Seven” Short Film Review- Relating Back to CRPS

Published on July 25, 2017 under RSDS General Info
By Guest Blogger Juli Wordgirl Chronic Pain Blogger, Juli Wordgirl, offers her insight into the short film entitled "A Happy Seven." How does she think this relates back to the CRPS/RSD community? Life with Complex Regional Pain Syndrome (CRPS) is very difficult for me. Over the past nine-years I’ve made some difficult decisions, and I’ve had to face the consequences of those decisions—whether they are my fault or not. But in the past two-years (especially the last six-months), I’ve made the decision to be pro-actively more positive in my mind-set. One of the steps I’ve taken in my pro-active path is finding a local chronic pain support group. The following review is based on my post on the support group’s…
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Knock Out Pain Together- An Inspirational Story of Coming Together

Published on July 18, 2017 under Events
   Sarah Phillips-O’Steen is an ally to the CRPS community. Ever since she was 2 years old, she has been witnessing what CRPS/RSD can do to a loved one. Her father, Julian Phillips, has been living in pain since his daughter was toddling around. As Sarah will tell you, he’s always been good at hiding his pain, but she has never known him without it. In January 2015, Julian took a terrible fall that sent him into one of the worst CRPS/RSD flare ups that he had ever experienced. This guided him into full body CRPS. While Julian was spending time in hospitals, fighting the pain, Sarah witnessed some of the grim realities that come with CRPS. Medical staff didn’t…
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RSD and Me- A New Full Time Job

Published on July 11, 2017 under Guest Blogger for RSDSA
By Guest Blogger Sylvia Miller Being diagnosed with RSD CRPS can cause people to go through a range of emotions: denial, frustration, confusion, sadness, incompleteness, etc. Sylvia writes about what it was like trying to find an answer that wasn't RSD/CRPS. What happens after the RSD diagnosis? How can you impact your life regardless of the pain?   3 years ago, I suffered a fall and fractured my ribs.  From that point forward, it seemed to be that I reached out to any doctor to [try to] understand the pain I encountered.   A physician diagnosed me as having RSD, but I thought, surely, this doctor is wrong.  So, I continued to research and search for any understanding about RSD and…
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My CRPS Experience at the Young Adult Weekend

Published on July 4, 2017 under Events
By Guest Blogger Jess Henry-Cross Jess was a participant in our very first CRPS Young Adult Weekend this past June. She was more than happy to write a brief blog about her experience and how it changed things for her. Why are events like this so important? Read about what Jess experienced to learn more.   Around 2:30 in the afternoon on Sunday, June 18th I found myself holding back a few (happy) tears.  I was driving home after spending the last 45 hours with a group of women who recharged me in a way I had never even dared to hope for.  I didn’t want the weekend to be over.   I signed up for the RSDSA Young Adult Weekend…
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How CRPS Is Like a Wailing Alarm That Never Shuts Off

Published on June 27, 2017 under Guest Blogger for RSDSA
By Guest Blogger Roberta Hierath This blog about CRPS being a wailing, screaming alarm that never shuts off was originally featured on The Mighty. We were given permission to post it as a part of #TheTuesdayBurn, especially since it explains the overwhelming feelings that CRPS can bring on. One thing I’ve learned in seven years of living with Complex Regional Pain Syndrome is that there is almost no one in the regular course of my life who truly understands what constant, unwavering and intense pain really feels like. I am glad for that fact as I wouldn’t wish this on anyone, but it does make it harder for people to relate to my daily experience. So I am going to try…
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7 Things I Can Do When The Pain Is Too Much- CRPS Blog

Published on June 20, 2017 under Guest Blogger for RSDSA
By Guest Blogger Kelly Hodgkins This blog was originally posted on Moonglotexas. Click here to view the original post. This post, entitled "7 Things I Can Do When The Pain Is Too Much" was posted with permission and offers great insight into things that you can do, or try to do, when your CRPS/RSD pain feels like too much. My CRPS has a habit of flaring up on days I’ve made plans to do fun things that rejuvenate my soul. Snuggled up under my duvet, I visualize the landscape before me trotting along on my horse. I rearrange flower beds, trim branches and try out that great idea from a book. Coffee in hand, I catch up with a friend…
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Knowing When To Push Yourself with CRPS

Published on June 13, 2017 under RSDS General Info
By Samantha Barrett What is your limit? How far can you truly push yourself and your CRPS? How do you gauge each and every day  when your ability changes by the hour? Samantha has experienced this and has some stories that may help. As someone who has been living with CRPS for over a decade, I ultimately know what my limits are. Did I learn what they were right away? Absolutely not. There was a lot of trial and error in the process. But overtime, I’ve learned to read the signals that my body has given me. I’ve met a lot of people with CRPS in my time with it, and the one thing everyone is trying to figure out…
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