RSDSA’s Rare Disease Week – 2020

Published on February 24, 2020 under RSDS General Info
Rare Disease Day is held annually on the last day of February 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 if you can! 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…
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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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Incomparable Pain

Published on January 8, 2020 under RSDS General Info
Written by Hydi Godsey for the RSDSA blog. My name is Hydi Godsey, I am a 51-year-old woman who has been married for 30 years. I have two girls. One of them is a 23-year-old in pharmacy school and the other is a 19-year-old freshman in college. This is the first year my husband and I have been empty nesters. My injury which caused RSD/CRPD, occurred 16-17 years ago and was such a stupid accident. I am right hand dominant and was opening a door at work when my wrist popped. When I first went to the doctor that January, they stated that the pain in my wrist and thumb area was carpel tunnel. From the beginning of January until…
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Thoughts From The Sibling of a CRPS/RSD Warrior

Published on December 18, 2019 under RSDS General Info
Written by Susan L. Schildt for the RSDSA blog. I have been asked, as a sibling of an RSD Warrior, to share my thoughts and feelings on this wicked disease. I am not good at sharing my feelings, but as I thought through this I thought that using the letters of the acronyms of this disease might be the way to go to describe what the disease does to the patient and family. RSD - Letters that define a disease of Intense burning sensation. R Robber of quality of life for patients Robber of quality family time due to suffering of patient Robber of anticipated fun events, hopes, and dreams due to the burning sensation that cripples the individual and…
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5 CRPS Lessons From My Pain Psychiatrist

Published on December 11, 2019 under RSDS General Info
Written by Carrie Cleary for the RSDSA blog. I had my first spine surgery, a laminectomy in 2008, at the age of 45. That was followed by a multi-level fusion in 2009. This is where we believed the CRPS started. I had two cervical spine fusions a few years after this. I had nerve blocks for the lumbar nerves every three months for years. After years of pain on and off then just on, I had a Spinal Cord Stimulator implanted in 2016. I was still taking opioids and living in Northern Illinois where the barometric pressure changes and months of bitter cold were killing me. Barometric pressure changes cause the tissues in your body to swell and push on…
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