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Walking the fire. My journey to pain management living with CRPS

Published on July 11, 2018 under RSDS General Info
By Roy N Greenwood I was diagnosed with CRPS in my right leg in late 1996, before the internet had really become a thing and most research was still done at the local public library. A simple slip and fall while working on a cold and rainy night back in December of 1995 changed my life forever. I found out quickly that going through the Worker’s comp system by itself was going to be a total an abomination, but doing it while suffering through the first stages of CRPS when early intervention is critical, would be even more distressing. At first, the insurance refused to accept the diagnosis or even pay for any of the treatments or durable medical equipment.…
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24 Tips For People With CRPS

Published on June 27, 2018 under Guest Blogger for RSDSA
By Guest Blogger Jennifer Ginsburg Jennifer has been living with CRPS for 24 years. In her 24 years with Complex Regional Pain Syndrome, she has learned a lot about herself and about the nature of CRPS. How can her experience help you? She created 24 tips to help you! As I just entered my 24th year with Complex Regional Pain Syndrome, I’ve realized I lived with this disease for well over half of my life.   I’ve had the “benefit” of being a child with CRPS and just wanting to move on in life.  I’ve suffered the “disadvantages” too and had to end my career in my mid-thirties.   My CRPS gave me 8 glorious years of remission.  It’s also…
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When Treatment Offers Hope For Normalcy

Published on June 20, 2018 under Guest Blogger for RSDSA
By Guest Blogger Jamynne Bowles Jamynne discusses a potential co-morbid condition of CRPS- Dysautonomia. How does this impact her life? How did the treatment of CRPS impact this condition? What does she do to make the most of each good moment? Find out what happens when treatment provides hope for a better day, but makes some of your days more complicated.   Yesterday, I was feeling brave.  I was feeling invincible.  I was feeling like I “could.”  And so, I did.  I grabbed the car key, put it in the ignition, put it in “drive,” and went.  I just went.  I think I drove a good 20 miles.  Admittedly, it was tough at times to see the road through my…
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Experimenting With Treatments/Modalities

Published on June 13, 2018 under Guest Blogger for RSDSA
 By Guest Blogger Lorna Fortner This blog comes at the perfect time, as RSDSA has been asking the community for different treatments or things that they do to minimize their pain or reach remission. Lorna took the time to write about the various methods of treatments that she has tried and why the "opioid crisis" is a problem for those with chronic pain. Hi, y’all! I’ve been seeing some conversations regarding “What now?”  Okay.  Got a diagnosis, but what is the best way to treat it?  All of us individually made-we’re as differently as our fingerprints.  Some people may respond best to physical therapy, some to epidurals, sympathetic nerve blocks, some may do better with medications, or a combination of…
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From Professional Patient To Young Adult Photographer

Published on June 6, 2018 under Guest Blogger for RSDSA
By Guest Blogger Caroline Bert We were lucky enough to meet Caroline at our Achilles Walk and then at our Long Island walk. As a young adult with CRPS/RSD, Caroline did not want to just be the "sick" girl, she wanted to be known for her dreams and talent. See how she did that here.   My name is Caroline Bert and I am 23 years old. I was diagnosed with RSD when I was 12. It started with an injury on my left wrist and then spread over time. In school I was known for being the girl that “always has a broken arm.” I was the girl who felt right at home when I was with my pain management…
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Life With CRPS In Europe With The RSDSA Board

Published on May 30, 2018 under RSDS General Info
By RSDSA Board Member, Ilona Thomassen What is it like for people living with CRPS in Europe? Ilona, a member of the RSDSA Board and of the Dutch Patient Society, addresses some of the similarities and differences between CRPS in America and in Europe. While some approaches are similar, some are quite different. What surprises you the most?   I am writing this blog from the other side of the earth, in Europe and, more precisely, in the Netherlands. There are also a lot of CRPS patients here.  There is a patient’s society to [help] inform patients, to support them, and to organize meetings. I have been the chair of that organization for many years and there are about 1800…
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CRPS- Find The Fruit Or Rot Inside

Published on May 23, 2018 under Guest Blogger for RSDSA
 By Gracie Bagosy-Young This blog was originally posted on The National Pain Report. Click here to see it there. Gracie discusses how CRPS helped her learn a lesson about herself. This involved finding the fruits of life every day. I was diagnosed with Complex Regional Pain Syndrome many years ago. Sometimes I forget how long it has been. Of course, no one explained what those 4 letters meant to me, they simply wrote them on a piece of paper and told me to google them. I left there irritated and confused. After some research, I landed on words like “incurable” and “lifelong” and those feelings soon turned to anger. That anger ate me up! It was rotting me from the…
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Belated Mother’s Day- Honor Thy Caregiver

Published on May 15, 2018 under RSDS General Info
By Guest Blogger Melissa Wardlaw As a patient who has been living with a multitude of painful chronic illnesses for over 15 years now, I have had to reluctantly rely on caregivers. Being a highly independent and self-sufficient person my entire life (even living in my own apartment at 16), this has been a very difficult pill to swallow! The most pivotal caregiver and unsung hero in my life has been and still is my mother Donna. So on this Mother’s Day 2018, I honor her! Further, I will share some lessons learned about honoring the caregiver(s) in your own life. Throughout my entire 20s, my focus was on my upwardly mobile and successful business career. But when I suffered…
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When Is Physical Pain Emotional Pain?

Published on May 8, 2018 under Guest Blogger for RSDSA
By Guest Blogger Deborah R. Brandt, PT, DPT, CMA   Twice, I have had post-traumatic stress disorder (PTSD) and chronic [complex] regional pain syndrome (CRPS) occur simultaneously.  In case other people may have PTSD associated with their CRPS, here are some insights and information I have gained from my healing process I would like to share with you. MY STORY I discover myself running on an unfamiliar path in Central Park and watch my 6 month-old Golden Retriever, Lily, ears floating out like wings, enjoying running with me.  Why am I running nowhere in Central Park on this beautiful fall day? Slowly, I remember.  I was playing with Lily in an area with other dogs and their owners when a…
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Safety Month and RSDSA- What Does It Mean

Published on May 1, 2018 under RSDS General Info
By Guest Blogger Jenny Picciotto Support groups are incredibly important to the CRPS community. RSDSA works to help make sure that these support groups are equipped with the tools that they may need. Jenny, a support group leader, writes about the upcoming Safety Month and what being a Support Group Facilitator has done for her. In June of last year, the RSDSA began an outreach program for support group leaders. I jumped at the opportunity to participate in their monthly calls. Having been the facilitator of the Oahu CRPS Support Group since 2013, I have faced many of the same challenges I heard described by other leaders; finding a place to hold meetings, getting the word out, selecting topics for…
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