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CRPS Wedding Chronicles: Venue Hunting

Published on April 5, 2016 under Stories of Hope
By Samantha Barrett, Special Events Coordinator Last week, you were able to read about a bit of my engagement story. I got engaged in October and we instantly started planning (hey, I’m an event coordinator by trade, it was only natural). We signed up for all of the wedding planning websites, bought a giant wedding planning binder, and started keeping a wedding planning idea notebook. So now it's time for the next story in the CRPS Wedding Chronicles! Since we’ve been together for almost nine years, we’ve talked about some of our wedding details before. Our colors are purple and silver, our theme is Beauty and the Beast, our bridal party was selected instantly, and our potential vendor list was…
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CRPS Wedding Chronicles- The Engagement

Published on March 29, 2016 under blog
By Samantha Barrett, Special Events Coordinator   In 2015, I had one of my worst CRPS flare ups, thanks to a dislocation from EDS (Ehlers-Danlos Syndrome). It was scary to me because it was the one limb I had not experienced pain in. But, it happened and I was in a wheelchair. I fought my way out of the wheelchair and back to my zebra print cane after a few months. I was ultimately used to flare ups at this point, as I was nine years into my diagnosis with CRPS. What did I do when I was able to move again? I went to a renaissance fair with my boyfriend and a group of friends. I had been looking…
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How My CRPS Pain Plot Twist Changed My Life

Published on March 23, 2016 under Guest Blogger for RSDSA
By Guest Blogger Audrey Johns I came across this meme on Facebook this morning and some emotions (both good and bad) came flooding back from yesterday. I have a disease called CRPS, a painful nerve disease that makes everyday a new struggle… heck I’m writing this to you from my bed, atop my 4 inch memory foam mattress pad, the only place I can be when in extreme pain. Yesterday I was working with a new pilates instructor, I was exclaiming how wonderful it was to feel pain from exercising, not CRPS pain but pain that was positive and that I knew was making me stronger. She did not understand, I had given her some guidelines before we started like…
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5 Do’s and Don’ts When It Comes to People with CRPS

Published on March 8, 2016 under Guest Blogger for RSDSA
By Guest Blogger Anna Evenosky   So often we find ourselves in situations where people are trying their best to help us when in reality they very well may be hurting us. I can see how being a loved one of someone with CRPS can be challenging in more ways than one. You may find yourself not knowing what we want from you. I hope these 5 Do's and Don't give you more insight as to how you can help and comfort us.   DO: Ask us how we are doing. Our CRPS is something that is always on our mind and we appreciate knowing that somebody is thinking about us. You don't need to worry about bringing up a…
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Living Beyond Your Illness- Getting By With CRPS

Published on March 1, 2016 under Guest Blogger for RSDSA
By Guest Blogger Suzanne Stewart. Originally Featured on her Tears of Truth blog. Hello Luvs, IF you haven’t read any of my blog before, you won’t know that I always start out my blog with “Hello Luvs”.  I had meant to write this long ago, but time gets away from all of us, so today the phone was on mute and the kitty was lying in her spot with me in the same room and it seemed a good time to write about this.  We can all get down and sad sometimes, even depressed.  I mean, having a chronic illness, or a list of chronic pain illnesses can get pretty monotonous to say the least! If you let yourself get…
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Early Predictors of Complex Regional Pain Syndrome

Published on February 23, 2016 under Guest Blogger for RSDSA
By Randall Kaye, MD., Chief Medical Officer of Axsome Therapeutics, Inc. What could help identify patients with CRPS earlier? While increasing one's index of suspicion is likely the best way to promote early detection, please consider the strong predictors described below.   CRPS is often triggered by minor or major trauma, such as needle stick, wrist fracture, surgery, but it can also occur spontaneously. In the general population, CRPS seems to occur most often after fracture (40%-60% of CRPS cases) and surgery is the next most common precipitating event. Sprains, contusions, and crush injuries are also known triggers. Retrospective population-based studies founds that CRPS is 3 to 4 times more frequent in women than in men, more commonly affects the…
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Think Twice About Eating That- CRPS and Diet

Published on February 16, 2016 under Guest Blogger for RSDSA
By Patricia Calderon, Guest Blogger for RSDSA   Who would have ever thought that what we eat while having CRPS/RSD would cause us more pain then we already experience? I found out the hard way when my symptoms were getting worst and worst each day, then some days not so much. "There has to be a reason for this," I said to myself. So, I kept a diary of all the foods I ate and my pain scale throughout the day. Low and behold, I found out that I was making my pain increase each day with the foods I was eating. Consuming a lot of processed foods was one of them. Because I am always in pain and can’t…
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RSDSA Spotlight: How CRPS Taught Me to Live In the Moment

Published on February 9, 2016 under Guest Blogger for RSDSA
By Anna Evenosky, Guest Blogger Rewind to that time that is so vague in my head that I can barely remember it. The time of my life when I was as free as a bird spreading its wings for the first time. The time of my life when I didn’t know CRPS existed. I can’t recall what being pain free feels like. Although, I can recall the happy times I would be lying if I said I didn’t miss. Going from a life where my biggest worries were passing a class, or getting something done on time, to a life of chronic illness, was an adjustment to say the least. Something I wasn’t exactly ready to take on. Although, I’m…
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So You Want to Dance- A New Way to Help CRPS

Published on February 2, 2016 under Guest Blogger for RSDSA
By Ryan Ferrell Do you sometimes struggle to get Enrique out of your head? Yo quiero estar contigo, vivir contigo Bailar contigo, tener contigo So does Lucrecia Martinez, a physical therapist from the Silicon Valley. She wrote about wrestling with her chronic pain after an injury in last summer’s Community Update (page six): Until then, my passion in life had been dancing. My husband and I met dancing. We loved to escape on date nights to dance salsa, cumbia, merengue, and any other Latin-infused music. At first, I denied that pain could rob me of my passion. I would grit and push myself through the pain. I feared that, if my husband and I could no longer dance, he would…
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Crazy Sock Walk Raises Awareness for CRPS/RSD and More

Published on January 26, 2016 under Events
By Samantha Barrett, Special Events Coordinator For the past few years, I have participated in Crazy Sock Day. I am a lover of crazy socks and have quite an inventory of them, so every day is Crazy Sock Day for me, but on January 24 it is embraced by the invisible illness community. I had heard it was for a young girl named Melanie who had several of the invisible illnesses that I did. As the years went by, I learned more about this young lady’s story. January 24 is her “painiversary.” To raise awareness and bring a little bit of sunshine to this girl’s life, Crazy Sock Day was started. It quickly took the CRPS Community by storm through…
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