Thoughts From The Parents of a CRPS/RSD Warrior

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…continue reading

Incomparable Pain

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…continue reading

Thoughts From The Sibling of a CRPS/RSD Warrior

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…continue reading

5 CRPS Lessons From My Pain Psychiatrist

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…continue reading

Olivia Erdman’s New Life with CRPS

Special thanks to Olivia Erdman for the taking the time to create this amazing vlog for her YouTube Channel. Take a moment to watch to learn more about her diagnosis, journey, friendships, and more. Please consider making a donation to RSDSA today!continue reading

I Have Made It This Far

Written by Colleen C. Ross for the RSDSA blog. How and when did you develop CRPS/RSD? Well, that is actually a really great question! I suffered a back injury around 2008ish, did not really get adequate medical treatment until 2009, and opted for a laminectomy at L5-S1. I pretty much knew right after surgery that things seemed much worse, but all of my concerns were dismissed and I was basically told that I just wanted the pain pills. After horrible results from a round of epidural cortisone injections, I opted to just realize that this was my new normal. That really did not last long though because by 2011 I was a hot mess, literally. My new PCP chalked it…continue reading

Be as Positive as You Can

Written by Lisa Marie Weiner for the RSDSA blog. How and when did you develop CRPS/RSD?  I developed CRPS/RSD after I had a knee surgery. Originally, I hurt it playing softball when I was 15 and aggravated it again when I was playing again at age 21. I had surgery and it was supposed to heal in four to six weeks. My knee was super swollen for 12 weeks. I went to many doctors to try to figure out what the problem was. First, they thought it was a neuroma. So, I had another surgery which did not help the pain any and then they thought I had a torn meniscus. This ended up in another surgery. Finally, I saw…continue reading

Buckle-Up Young Warrior: An Inspirational Story for Adolescents with CRPS

Written by Madison McKune for the RSDSA blog. I know your favorite stories start with the classic phrase of “once upon a time”, or have these amazing, colorful, vivid, superheroes that somehow in the brink of the scariest moments turn bad into good. I know that this diagnosis you just received seems like one of those scariest moments. That all these new faces and doctors, needle pricks, and hospital stays seem like you are living your least favorite fairytale, or that you are now a pawn. Let me assure you sweet child; you are exactly where you are supposed to be. You are not lost; I and all the other warriors in this community are holding your hand. I, Madison…continue reading

Turn to Those Who Have Your Back

Written by Alissa Brown for the RSDSA blog. How and when did you develop CRPS/RSD? I turned around too quickly on a tile floor which resulted in a sprained knee and CRPS. This happened in January of 2010. What has daily life been like since your diagnosis? Somehow, every day is the same, but also extremely different. I am always in pain and struggle to force myself to get out of bed, but once I am out of bed, it is all up in the air. First, I will let my dogs out and figure out what kind of weather is going on outside, then I pop my pills and start to get ready. I have to decide what to…continue reading

Through It All I Persevere

Written by Kelly Considine for the RSDSA blog. How and when did you develop CRPS? Imagine being turned away from doctors when they learn of your CRPS diagnosis. Imagine being told you would be better off having cancer. Imagine not one, but several doctors recommending an amputation when they do not fully understand the underlying issue. These are just a few of the things I have faced after being diagnosed with Complex Regional Pain Syndrome (CRPS). On September 5, 2005, the first week of my senior year in high school, my life changed forever after spraining my ankle playing volleyball. I had sprained my ankle and suffered various sports injuries growing up, so I was very upset when I quickly…continue reading