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    RSDSA offers you the resources you need to not only cope with CRPS/RSD, but to live well

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    Stories of Hope

    RSDSA: More than 30 Years of Helping Those Affected by CRPS/RSD

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Living With CRPS/RSD


RSDSA gives those affected by CRPS/RSD education, advocacy and hope! From signs & symptoms, to diagnosis, to living with CRPS/RSD long term, this section has health and lifestyle information for adults and youth living with this painful and debilitating condition – as well as for their families and caregivers.

Research/Medical


RSDSA raises funds for research to find better treatments – and a cure – for CRPS/RSD. We also work with research groups and healthcare professionals worldwide to foster collaboration, communication and awareness. Here you’ll find the latest studies and articles about progress and breakthroughs

Community


CRPS/RSD can be isolating. RSDSA ensures that those affected by CRPS/RSD are not alone. We’ve built a strong, vibrant community that participates in conferences, fundraising events, mentoring, support groups and other activities that help them take control of life with CRPS/RSD. Join us.

Upcoming Events

September 11, 2015 – Integrated Solution to CRPS Conference – Cherry Hill, NJ
Created for people just like you. Individuals with CRPS, friends, family, and caregivers of the CRPS community are invited to attend. The RSDSA, along with the help from generous sponsors, has assembled a friendly forum where you and experts in the CRPS field will spend the day sharing valuable information and exploring new solutions to help manage CRPS.  You will have the opportunity to talk to and network with others who experience what you do, day after day.
September 12, 2015 – 2015 CRPS/RSD Walk for Awareness – Pennsauken, NJ
Dr. Philip Getson, DO is the host of the years walk. He has been practicing in New Jersey for the past 39 years. As a family practitioner, he became interested in CRPS in the 1990s.

Recent Posts

CCK- We Feel So Good: A Reflection of Our Experience at the Center for Courageous Kids in Scottsville, Kentucky (7/21/2015) -  By Samantha Barrett, RSDSA’s Special Events Coordinator I have a confession to make- I have never been to summer camp. Or, at least I hadn’t experienced camp until this past week when I went to the Center for Courageous Kids, where there was a week for pediatric pain. This was made possible by a collaboration between The Coalition Against Pediatric Pain, RSDSA, U.S. Pain Foundation, Rock Out to Knock Out RSD, and of course The Center for Courageous Kids. It is amazing what we can do when we all work together. I was able to adventure to Kentucky to represent RSDSA at this camp and had some fun of my own! The children and their families were able to partake...
Easy Ways to Give to a Charity (7/9/2015) -   By Samantha Barrett, RSDSA’s Special Events Fundraiser A question that we get frequently is: “How can I give to the community?” There are plenty of very easy ways to give back that can be a part of things you do every day! These methods don’t just apply to RSDSA, but to several different charities and causes. Goodsearch.com is your new best friend (http://www.goodsearch.com)!    Google is running our world, but GoodSearch will get you the same results, all while donating to charity! Go to the website and click “Find A Cause to Support.”  You can then search for your favorite cause (including RSDSA). Once you select the cause, you can sign in with Facebook or with an email address. Then,...
Current and Future RSDSA Initiatives on Behalf of the RSDSA Community (7/2/2015) - Current and Future RSDSA Initiatives on Behalf of the RSDSA Community By Jim Broatch, RSDSA’s Executive Vice President, Director This month, RSDSA is partnering with The Coalition Against Pediatric Pain and The US Pain Foundation to co-sponsor a free camp for children living in chronic pain: THE CENTER FOR COURAGEOUS KIDS in Scottsville, Kentucky. The camp is July 14-17, 2015 for children ages 7-17. The goals of the summer camp are FUN, FUN, & FUN!!!! It is the first time we have ever found a camp for children living in pain. The camp is totally FREE for all participants and a parent/guardian who will stay at the camp with his/her child. Please go to www.tcapp.org and fill out an application...
Developing CRPS/RSD and finding hope (6/29/2015) - Hi there! My name is Katie and I’m the blogger behind Upcycled Treasures and A Handcrafted Wedding. I was diagnosed with CRPS back in August 2012, and remember how difficult it was to find information and inspiring stories. In fact, I generally ended my search feeling more discouraged than when I started, and this only seemed to make my symptoms worse. Can anyone else relate? The RSDSA website was the best source of information I could find, which is why I am so excited to share my story with you. I want you to know that there is hope, and not to be discouraged by what you read. However, I’d be lying if I didn’t admit that I am also...
Sammie Barrett is RSDSA’s new Special Events Coordinator (6/19/2015) -   My name is Sammie Barrett. I am the new Special Events Coordinator for the RSDSA. The RSDSA has been near and dear to my heart since a year after I was diagnosed.  I was diagnosed with RSD/CRPS 9 years ago after spraining my ankle in ballet. I danced 5 days a week for a minimum of 4 hours per night as well as teaching some classes. But once this “sprain” didn’t heal correctly, that all changed. Five doctors later, someone finally was able to diagnose me. Unfortunately, this doctor told me I would never walk again, and that I absolutely would not dance again. As a thirteen year old little girl, my world had been turned upside down. But,...
The Handicap’s Appetite (6/2/2015) -     by Nancy Meagher     Sometimes I still crave running and walking. It was a rare wedding celebration that I had not been moved by the music to dance. A few years ago our niece married a fine fellow from the south of France. As I had taken a few years of High School French, and as language is a hobby of mine—- I was placed at the reception table with: Sylvan’s Lovely Aunts. Moved by American songs in a language that did not come easily, a friendship ensued. We danced our international hearts out. The French in their stylish slim heels – I in a sassy pair of patent leather flats that my friend Elisa insisted I buy....
How to Obtain the Best Medical Care for CRPS (5/14/2015) - Steven Feinberg, MD, MPH Board Certified, Physical Medicine & Rehabilitation Board Certified, Pain Medicine Feinberg Medical Group Palo Alto, CA Rachel Feinberg, PT, DPT Director, Physical Therapy & Functional Restoration Program Feinberg Medical Group Palo Alto, CA If you are reading this, it unfortunately means you or a friend or loved one have been diagnosed with complex regional pain syndrome (CRPS). This article is not about diagnosing and treating CRPS but rather about how to obtain the best medical care for this diagnosis. There are lots of good reasons to obtain the best medical care possible for this diagnosis. First and foremost is that early quality treatment has the best chance of resulting in the best outcome. Second, the wrong...
Multidisciplinary Treatment…Three Weeks in Utah (5/8/2015) -   By Aubrey Haley   In 2013, after living with full body CRPS for almost four years, I was afforded the opportunity to go to a treatment facility. My husband and I dug deep into the multidisciplinary treatment world, searching online and making phone calls for days. I knew I didn’t want to be checked into a rehabilitation hospital. Likewise, I didn’t want to be treated like a drug addict or a psych patient; I needed a facility that understood the intricacies of chronic pain. The Bridge Health Recovery Center kept popping up on my Google searches, like a sign from the universe. I was terrified to leave my family for almost a month, but I was desperate to treat...
Please join us for the Achilles International Walk for Hope and Possibilities on June 28, 2015 in NYC’s Central Park (4/24/2015) - I want to introduce you to Diane Simonson, a first-time walker in this year’s walk. I am a former ballet dancer. In 2006, I began to have problems with my legs. I was tested for MS, Lou Gerhig’s Disease, and everything else under the sun. As many of us have experienced – doctors told me I was ‘faking’ it, and it was ‘all in my head.’ (Yes, I can magically make my legs swell to twice their size and make skin color changes! I ‘m an amazingly good faker!) Finally, I was diagnosed with CRPS/RSD in 2009 .I was also very, very fortunate to find doctors (a neurologist, two orthopedics, a pain management doctor) at HSS who still work together...
The Cynthia Penaskovic Memorial Fund (4/17/2015) -   Pain is a more terrible lord of mankind than even death himself. – Albert Schweitzer. Too often, life changes on a dime as my pastor frequently tells our congregation. Just ask any person suffering with CRPS when they developed CRPS/RSD and they can immediately relate the date and time. So it was with Cynthia Penaskovic, a vibrant naval pediatric flight nurse who developed CRPS/RSDS 25-years ago after a car accident in southern California. Her doctors at Scripps Torrey Pines in San Diego called it “one of the worse cases of widespread RSDS they had even seen.” Joan Penaskovic, Cynthia’s sister spoke of her subsequent “solitary life spent creating exquisite beaded art which she often donated, until she could no...
New U.S. Clinical Trial of Neridronate (4/13/2015) -   In the last fifteen years, only two randomized, placebo-controlled trials for CRPS have been conducted in the United States. Sadly, both were unsuccessful. Our optimism is rising, however, with the U.S. Food and Drug Administration’s declaration in 2014 that Complex Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy (RSD), is officially a rare disease. The designation is a strong catalyst for new drug development. Developers qualify for clinical trial tax incentives, may sell the drug without competition for seven years, and may enroll fewer patients in a trial (as recruiting is more difficult in small populations). Four pharmaceutical companies are now considering clinical trials for CRPS in the United States. The first out of the gates is...
Camp for Courageous Kids!!!! (4/2/2015) - Do you remember sitting around the campfire and signing camp songs, roasting marshmallows and giggling with your new friends? It’s your first day of summer camp and you are so excited to be there, to join in all the activities:  archery, bowling, arts & crafts, horseback riding, etc. Fast forward 25 years to being a Mom and/or Dad whose child who lives in chronic pain – there are no summer camps for your child because he/she is “too complex.” But now there is a SUMMER CAMP for children living in chronic pain: THE CENTER FOR COURAGEOUS KIDS in Scottsville, Kentucky. RSDSA together with the US Pain Foundation and The Coalition Against Pediatric Pain (TCAPP) is sponsoring a camp July 14-17,...
rsds logo RSDSA launches new, user-friendly website and blog to help the CRPS Community (2/8/2015) - Welcome to RSDSA’s new website and blog. We’ve updated our presence on the web in order to better serve the CRPS/RSD community. The new website is very user friendly and easy to navigate. The idea is to help you quickly find the information, tools, and strategies you need to understand the diagnosis of and treatments for CRPS — and how to live well despite having this condition. For those visitors who don’t know about us or about CRPS/RSD, RSDSA is an international not-for-profit organization based in Milford, Conn. Our mission for the last 30+ years is to provide support, education, and hope to all those affected by CRPS/RSD while we drive the search for better treatment options and a cure....

Recent Videos

Watch this compelling video about the experience and impact of having CRPS — and the need for early diagnosis & treatment.