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The Highs and Lows of CRPS

Published on March 25, 2020 under RSDS General Info
Written by Sandy Geddes for the RSDSA blog. I turned 50 in January 2019. Fifty was supposed to be my year. I even did the SNL Sally O’Malley skit as a joke on my birthday. You know the one: “I like to kick & stretch & kick! I’m 50! Fifty years old!” I set big goals for myself that year. The biggest one was to run the slalom waterski course which is very challenging. I trained and practiced so hard even though I had a broken toe! I just taped it up and got to it. My pain threshold was very high. My husband and I would drive eight hours to Orlando five times in one year so that I…
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One Hour at a Time, One Day at a Time

Published on March 11, 2020 under RSDS General Info
Written by Kathleen Derby for the RSDSA blog. How and when did you develop CRPS/RSD?  I was in a bad car accident in 1977, the year I graduated from high school. The following year, I had surgery on both of my feet. It was a bunionectomy on each foot. I was 19 and my doctor said I had the feet of a 40-year-old. I was admitted to the hospital and released in a few days. That was the beginning of my nightmare. It took me a very long time to heal from that surgery. It was a good year before I could even bend my big toes. I had tremendous pain by the end of each day after work. No…
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Be Your Own Advocate

Published on March 4, 2020 under RSDS General Info
Written by April Ball for the RSDSA blog.  How and when did you develop CRPS/RSD? I had an epidural injection for a herniated disc that I had a reaction to. It was my third injection and it hurt pretty bad when the pain doctor did it. It was unlike the others I had. I cried when the doctor stuck me. I could feel him pushing on my lower back. 24 hours after the injection I could not move my head from side to side. I could not bend slightly and I had to have help walking. I could not lift my right leg or put my sock on my foot. It took almost a year for me to get diagnosed.…
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RSDSA’s Rare Disease Week – 2020

Published on February 24, 2020 under RSDS General Info
Rare Disease Day is held on the last day of February every year to raise awareness of rare diseases. This year, Rare Disease Day is Saturday, February 29th, 2020, but RSDSA is working to spread awareness for CRPS all week long. Check out our daily virtual activities and join us! Monday: Make your voice heard: Share your CRPS journey photos on social media by using the hashtag #RSDSArare. We want to make sure that those without CRPS understand what CRPS is and what it looks like. Tuesday: Write and/or visit your local and state representatives to educate them about CRPS. Check out this sample letter that you can share. Wednesday: Join the #SpoonieChat on Twitter at 8p ET to connect with…
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CRPS Warriors Are Not Pretending

Published on February 19, 2020 under RSDS General Info
Written by Judi Soderberg for the RSDSA blog. How and when did you develop CRPS/RSD? For 25 years I had a shoulder issue that doctors diagnosed as Thoracic Outlet Syndrome. I tried very hard to work with that and just let it go, but the pain increased over the years. So when a vascular surgeon told me it could be corrected with surgery, I was all for it. Of course he did not warn me about the consequences of such surgery, namely CRPS. He removed the first rib, the anterior and middle scalene muscles, and low and behold, found my brachial plexus bundle was twisted. Normally it has nerves on one side, artery on the other, vein on top. Mine…
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CRPS Guided Me to My Calling

Published on February 12, 2020 under RSDS General Info
Written by Marisol Pérez for the RSDSA blog. Hi there. This is a part of my CRPS story. I developed CRPS following a right ankle surgery in 2012. I was 25 at the time. I enjoyed the outdoors, jogging, and walking my dog (now I have three). Prior to the surgery, I was told it would be minimally invasive and that life would go back to “normal.” That surgery changed my life. I knew something was wrong right after the surgery. The pain was unbearable and every time I would go back to the doctor for a follow-up, I was brushed off and told that this was all part of the healing process. I knew in my gut that something…
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Awareness Will One Day Bring Us a Cure

Published on February 5, 2020 under RSDS General Info
Written by Shannon Beckman for the RSDSA blog. In 2009, I was at a concert to see my favorite band. I was downstairs and I heard the music start so I ran up the stairs in my flip flops. I stumbled and ended up falling backwards, landing on the step behind me, and hyperextending my big toe. While I was in a lot of pain in the days that followed, I heard from everyone that, "There is nothing you can do for a broken toe" and hoped it would heal on its own. It began to get worse and eventually I ended up in a walking boot, with instructions to ice it frequently for six weeks. As weeks went by,…
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What Happens When the Strong Get Tired?

Published on January 29, 2020 under RSDS General Info
Written by Scott Setchel for the RSDSA blog.   What happens when the strong get tired? What happens when we don't want to fight anymore? Is this what I am reduced to? Once I was full of life Once I was full of joy Once I was full of laughter I endured cancer, not once, but twice I could dance I could skate I entertained hundreds and hundreds Of people over the decades But, now I am tired I am fighting a disease that has no cure I am fighting a disease that no one understands Unless you, yourself, have it as well The constant pain is 24/7 It is wearing me down It robbed me of who I was…
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Set a Goal Each Day

Published on January 22, 2020 under RSDS General Info
Written by Christopher Skinner for the RSDSA blog. Your struggles don't have to be lonely or a family struggle! There are good people out there to help! I am a Christian man with full body Complex Regional Pain Syndrome (CRPS). I have been full body for about a year now. I was playing basketball with two students at a drug and alcohol rehabilitation school working as a student advisor/teacher and was forcefully pushed from behind causing me to fall into a heavy stage bench. This caused me to tear my rotator cuff, hit my head, and hurt my neck. Either this event or the surgery about five months later caused me to develop CRPS in my entire right arm. I…
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Thoughts From The Parents of a CRPS/RSD Warrior

Published on January 15, 2020 under RSDS General Info
Written by John and Mary Ann Schildt for the RSDSA blog. It was a day like all days, but one that would change our lives forever. Our daughter was a freshman music therapy major at Shenandoah University in Winchester, Virginia. On February 12, 1990 she called us about extreme pain in her right hand/wrist. There was surgery for what was thought to be carpal tunnel. However, it was not carpal tunnel at all. In April of 1990, we received the dreaded diagnosis of RSD or Reflex Sympathetic Dystrophy. It was the beginning of a pain that does not go away just like a fire that continues to smolder and burn. Thus began a thirty year journey of suffering for Shannon…
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