From Professional Patient To Young Adult Photographer

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…continue reading

Life With CRPS In Europe With The RSDSA Board

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…continue reading

CRPS- Find The Fruit Or Rot Inside

 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…continue reading

Belated Mother’s Day- Honor Thy Caregiver

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…continue reading

When Is Physical Pain Emotional Pain?

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…continue reading

Safety Month and RSDSA- What Does It Mean

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…continue reading

A Conversation With Our Newest CRPS Blogger

By Lorna Fortner Lorna is a member of the CRPS. As a new blogger, she wanted to introduce herself and tell her story before she continues on her blogging journey. We bet that many of you will be able to relate to Lorna. Make sure to give her a warm welcome. Hi, y’all, I’m Lorna Fortner.   I have CRPS2 since 1994, but it took about 7 years to get the diagnosis.   Since I new to blogging, maybe a little background would be nice for you to fill in some of the gaps.   I was born in WI in 1951.  Had asthma-first attack at 6 mos.  For the chronic sore throats, they once gave me penicillin, at age 3,…continue reading

My Top 5 Strategies For Dealing With A CRPS Flare

Written by Melissa Wardlaw for the RSDSA blog As a person living with CRPS, Melissa has had to manage a number of full body flares and pain for almost two decades. Because of this, Melissa was able to compile a list of tips that work for her to deal with pain flares. While these may not work for everyone, it may be a great starting point. As a patient who has suffered from systemic CRPS/RSD (full-body) and multiple other chronic illnesses and pain for over 15 years now, one unfortunate factor I can rely on in my medical journey is knowing I will experience flares; aka, an increase or exacerbation of pain & symptoms. Flares can be mild or severe,…continue reading

Finding Your Flashlight With CRPS

By Guest Blogger Morgan Trevithick Morgan experienced a CRPS diagnosis after doing something she loved. She was then surrounded by the darkness that CRPS can bring. What did it take for her to come out of the darkness? A flashlight. See what she means below. Most people have passions, and even if they don’t admit it, there is always something that secretly brings them joy. This, for me, was running. I could have suffered the worst day of my life, but the second I heard my feet bounce on and off the pavement, all my stress dissipated. On July 8, 2015 I suffered an extreme running accident that lead to nearly every injury one person could possess. After about a…continue reading

How CRPS Is A Family Disease

By Samantha Anderson Sometimes, we get so wrapped up in our pain and our diagnosis that we do not realize that CRPS goes beyond us. Our families can be changed because of a CRPS diagnosis. While we have to focus on working on our own pain, it can be important to recognize some of the impacts of CRPS being a family illness. Last night, I was watching a television show with my mom. In it, the son was struggling with an illness. The therapist speaking to the parents explained that it is a chronic illness, which makes it a family illness. This does not mean that it is genetic, but it means that the family is affected by it. That’s…continue reading