Donate
Events

A Nurse’s Fight Back Against CRPS- Impacting Other Nurses

Published on October 17, 2017 under Giving Back
By Guest Blogger Nurse Beth Seickel When RSDSA was asked to be a part of ASPMN-LI's 16th Annual Pain Conference, we were happy to join. Nurse Beth, a CRPS warrior, is one of the first people we wanted by our side during this. She was kind enough to write about her experience. She is a nurse fighting CRPS while educating others.   RSDSA was invited to be part of the “ASPMN-LI Chapter‘s 16th Annual Pain Conference” at the DeMatteis Center for Cardiac Research and Education in Greenvale, New York, an annex of St. Francis Hospital on Long Island. The (ASPMN-LI) American Society for Pain Management Nursing-Long Island Chapter’s mission: “TO ADVANCE AND PROMOTE OPTIMAL NURSING CARE FOR PEOPLE AFFECTED BY…
continue reading

The Top 10 Shoe Brands for CRPS From a CRPS Perspective

Published on October 10, 2017 under Guest Blogger for RSDSA
By Guest Blogger Ashley Epping I developed CRPS at 12 years old in my left wrist. After being diagnosed, I spent the next six years dancing competitively, staying at the Pediatric Cleveland Clinic, creating art, traveling abroad and applying to colleges. I never once thought about my shoe choice because I didn’t need to. Though I would always see others in my support groups posting photos of shoes that worked for them, and to be honest most were not versatile enough to wear for specific occasions such as professional or dressy settings. For the first six years my pain was only located in my upper body, but in the following years the pain spread to the lower regions. For the…
continue reading

There’s a Monster in the House- CRPS Even Affects A Caregiver

Published on October 3, 2017 under Guest Blogger for RSDSA
By Guest Blogger Stephanie Umlor While we live with CRPS daily and can let it take over our thoughts, we often don't realize how our loved ones are affected. This is a reminder that every caregiver and loved one can be affected by this CRPS "monster" as well. A reality of anger, hurt, and pain rages havoc on our bodies and minds CRPS is a methodical monster. Convincing us that we are helpless, worthless, a burden, as well as unable to to love someone the same way as we did before. Leaving us in an atmosphere so overwhelming we might as well stay. I call this “ CRPS Pain Limbo;" I know most medical professionals refer to it as “…
continue reading

How CRPS is Like Pennywise and “IT”- What We Can Learn

Published on September 19, 2017 under Opinion
By Samantha Anderson To compare CRPS to one of the biggest horror re-makes of this year, "IT," seems like a bold move. But, let's say CRPS is Pennywise. How can we find similarities? When the remake of Stephen King’s “IT” came out, I wanted absolutely nothing to do with it. Horror movies are not my number one go to, at least not any more. Last week, I was having a particularly down day, so my husband suggested date night. We work opposite schedules, so this made me incredibly happy. We decided a movie would probably be for the best, but then the only movie we “mutually” wanted to see was “IT.” Yes, readers, I may have fudged the truth a…
continue reading

Slowing Down with CRPS- How To Say No While Staying Happy

Published on September 12, 2017 under Opinion
By Samantha Anderson I've lived with CRPS for 11 out of my 24 years on this planet. I've always been a type-A personality that hates turning down a job or a favor for anyone. This has gotten me into a pickle. Why is slowing down important? Based on personal experience, and observation of the CRPS community for over a decade, there is one thing that so many of us have in common. We all struggle with slowing down. What do I mean by slowing down? I mean leaving work or cutting back hours, not making cupcakes for your niece’s birthday party, staying home instead of going out, and the like. Over the years, I have noticed that I have a…
continue reading

A New Month, An Almost New Season- What’s Coming in CRPS/RSD

Published on September 5, 2017 under Events
I can’t believe it is September already! Before we know it, the leaves will start falling, pumpkins will start glowing, and it will be sweater weather (at least here in New England). Not only do all of these amazing things happen, but this is when our events really start to kick up. Woohoo! We’re starting September off with a bang. This coming weekend, we will be in East Meadow, New York at Eisenhower Park for the 2nd Annual Long Island CRPS/RSD Awareness Walk. This event is going to be spectacular, as the committee members have worked tirelessly to put together a great day. There will be raffle items, crafts, fake tattoos, a barbeque, and of course an environment of hope…
continue reading

CRPS Retreats and Gatherings- The Positive Impact of the YA Retreat

Published on August 29, 2017 under Events
By Guest Blogger Melissa Lanty RSDSA is focusing on how we can better serve the community, especially with November (CRPS Awareness Month) quickly approaching. One of our young adults contributed this blog shortly after our first young adult weekend, which was a great success. Read what Melissa has to say about how this weekend impacted her! Be sure to keep an eye on our events calendar for all things CRPS coming up! The first time I heard of CRPS/RSD was when my cousin, Ken, was finally given a diagnosis for the intense, burning pain he had been experiencing.  By the time the doctors figured out his diagnosis it already spread, jumped, and did all the horrible things this disease can…
continue reading

Palliative Care for the Person with Complex Pain Generating Syndromes

Published on August 23, 2017 under Guest Blogger for RSDSA
By Dr. Terri A. Lewis What is palliative care and what does it mean for people with complex pain syndromes? Dr. Lewis sheds light on this topic for people that are curious about it and would like to know more. What is Palliative Care? Palliative care (pronounced pal-lee-uh-tiv) is specialized medical care for people with serious illness. This type of care is focused on providing relief from the symptoms and stress of a serious illness. The World Health Organization (WHO) defines palliative care according to the following criteria - Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and…
continue reading

CRPS From An Outside Perspective- Interview With a Husband

Published on August 15, 2017 under Opinion
By Samantha Anderson, Special Events Coordinator After several requests for my husband and I to give a bit of our story and let everyone know how things work with us, I decided to interview him to find out what he thinks about CRPS/RSD as a person that lives with it daily without physically experiencing it. 10 years ago, I started dating my now husband. We were each 14 years old. This was less than a year after my CRPS/RSD diagnosis. As a matter of fact, I was still on crutches when I started dating the boy with the blue mohawk. At that point, I didn’t know the extent that CRPS/RSD would actually impact my life. I know the doctors told…
continue reading

How DRG Differs from SCS- The Idea of Pleasant Stimuli in CRPS

Published on August 8, 2017 under RSDS General Info
By Guest Blogger Dr. Chu Dr. Chu details studies that have been done, treatments that have been done in the past, and findings for DRG versus SCS. As most patients suffering from Complex Regional Pain Syndrome know, long-term data regarding standard treatment for this oftentimes debilitating condition has been mediocre at best. In fact, most of the usual treatment available, until recently, have been extremely limited. Nerve-specific medications can have intolerable side effects and low responder rates. Injections such as sympathetic nerve blocks are typically short-lived. Even more advanced therapeutics such as Dorsal Column Stimulation (traditional SCS) have mixed results with patients reporting unwanted areas of stimulation or loss of pain relief over time. The idea behind neuromodulation is simple,…
continue reading