Find Anything to Help Cope

Written by Julianne Williams for the RSDSA blog. How and when did you develop CRPS/RSD? I developed RSD when I was 38. I fell down some outdoor stairs and flew into a parking lot. I crushed about eight bones in my foot and ankle. What has daily life been like since your diagnosis? My life has been destroyed by this disease. I was an avid runner and an RN both of which I have never been able to do again. My day to day life is totally controlled by pain. I have no ability to make plans because I never know how bad my days will be. What is one thing you wish those without CRPS/RSD could understand? I wish…continue reading

My Life and Pain Levels are Constantly Changing

Written by Jessica L. for the RSDSA blog. How and when did you develop CRPS/RSD? I first developed CRPS in June of 2014 at the age of 16. On June 12th I was playing Giant Jenga with friends when someone lost their balance and came down hard on my left foot. I had broken that foot four times in the past and barely thought anything of it. A few days later my foot began to change colors, swell, and become cold. Soon the pain was too bad for me to walk, but when I went to the doctor nothing was broken. After weeks of increasing pain I was referred to a pain specialist and was seen a few weeks later.…continue reading

A High Degree of Uncertainty

This piece was written by Jenny Picciotto and first appeared on ForGrace.org. My journey with chronic pain began with a repetitive stress injury to my foot from playing tennis. Tennis was new for me, but it was an activity my husband had loved his entire life. With kids approaching college, I saw it as a common interest that would sustain us into our lives as empty nesters. I took up the game and dreamed of playing doubles together well into our sunset years. We joined a social tennis club where I found friends and developed a love of the game. My retirement fantasy was not to be. I developed pain in the ball of my foot that felt like bone…continue reading

In Tune

Written by Sue Racaniello for the RSDSA blog.   My body used to walk through life unaware of it's surroundings It was a vehicle to get me to point B It's supposed to be that way, or is it? Should I feel every nuance around me? Every whisper of the wind on my hand, every inch of earth beneath my foot?   I'm still trying to sort this out And figure out how to go about I have to strike a balance To stay in tune with people around me While I control the pain inside thee   Each step with my foot Or grasp of my hand Transports me to a no mans land I hear people talking, And…continue reading

Continue Pushing, Continue Fighting

Written by Destinee Macklin for the RSDSA blog. How and when did you develop CRPS/RSD? On May 11, 2018, I was the passenger in a vehicle we were using to conduct patrol. During a routine traffic stop, a suspect bailed out of the passenger side of vehicle armed with a handgun. As I excited my vehicle to pursue the suspect, I took two footsteps and saw a headlight. I put out my left arm in fear at which time I was struck by a truck. I was able to gain my balance, continue to pursue the suspect, place him into custody, and retrieve the handgun. I was sent to shock trauma and six months later, October 2018, I was diagnosed with Complex…continue reading

In A Flash

Written by Sue Racaniello for the RSDSA blog.   In a flash A life can change In a flash, the flame ignited In a flash, my world divided   Minutes to hours, hours to days My mind is unable to leave this maze   Days to weeks, weeks to months Time is racing yet I feel so stuck There are moments I can't even speak And that's when everything feels so bleak   Weeks to months, months to a year I go outside but still with great fear The flames have subsided, but the pain is still here   I've made great progress nevertheless And now it's time to reassess I promise to my family and to myself That I…continue reading

The Highs and Lows of CRPS

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…continue reading

One Hour at a Time, One Day at a Time

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…continue reading

Be Your Own Advocate

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.…continue reading

RSDSA’s Rare Disease Week – 2020

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…continue reading