Team Caroline: A CRPS Story of Hope & Of Giving Back

Written by Caroline Bert for the RSDSA blog. Caroline is a CRPS/RSD warrior that has been fighting for about 9 years. Now, Caroline is doing what she can to defy CRPS "limits" and to make a difference in the CRPS/RSD community through fundraisers. My name is Caroline Bert and I am 21 years old. In 2007 I broke my left wrist, when the doctor took my cast off my arm was crooked. After 11 months of many doctors ruling things out, my diagnosis was Reflex Sympathetic Dystrophy. Dr. Neil Kirschen treated me by a series of 3 stellate ganglion nerve blocks , and then on the first treatment of the second series I woke up with full relief. I went…continue reading

A Journey with CRPS/RSD Through the Gift of Music

  By Guest Blogger Shannon L. Everyone has that one thing that gets them through their CRPS/RSD battle. For Shannon, it is music. Read her story below. “WOW” is all I can say as I sit back and reflect on the past 26.5 years in dealing with RSD (yes, I know the correct term is CRPS but I still call it RSD).  In the midst of all the changes in my life as a result of RSD, the one constant in my life has been my music and how it has helped me deal with the pain. I have been wondering how to even start this blog, as so much has happened over 26.5 years - all the doctor appointments,…continue reading

The Friend Who Didn’t Tell Me About Their Chronic Illness

By Melissa Lovitz, Guest Blogger for RSDSA Dear Friend, I think you didn’t tell me about your chronic illness because I didn’t create a space for you to share with me more about your whole self. I wasn’t fully open and honest with you either – I’m sorry. Living with an invisible illness isn’t easy, and sometimes the shame and stigma that is associated with our conditions hinders our ability to be forthcoming about this important aspect of our lives. But, our silence perpetuates the invisibility of our illnesses – just saying. I think you didn’t tell me because you’re so used to, and good at, managing your condition on your own.  I am too! I wonder if you thought…continue reading

CRPS Wedding Chronicles: The Dress

By Samantha Barrett, Special Events Coordinator Wedding Dress Shopping with CRPS It’s been a bit since I wrote about wedding planning with CRPS. But let me tell you, a lot has been going on behind the scenes. You think that starting to plan almost two years in advance would be enough, but obstacles do come up. If you want to read about the proposal, click here. If you want to read about how I picked my venue, click here. Before we delve into wedding dress shopping, I wanted to say something. Just because you have CRPS or your significant other has CRPS doesn’t mean you can’t get married and live out your fairy tale. CRPS is a challenge, I would…continue reading

The True Definition of a CRPS “Warrior”

  By Anna Evenosky, Frequent Contributor What is the true definition of a CRPS Warrior? We refer to ourselves all the time as “CRPS Warriors.” Although, what does it truly mean to be a warrior? Warrior is defined as, a brave or experienced soldier or fighter. So yes, we do fit under this definition considering every day we have no choice but to fight. We fight to keep our function and fight to keep our spirits bright and alive. Recently, I have had endless things go wrong for me. On top of Complex Regional Pain Syndrome (CRPS), I was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS), my depression came on full force, and my anxiety on how I will go…continue reading

But I Still Look Fine- Living with Chronic Pain/CRPS

By Guest Blogger Tara White, RN, (Disabled)   I used to be a very active woman. I proudly served as a corpsman in the United States Navy for five years. I went to Nursing School and loved working in Obstetrics for twenty years. I climbed the difficult back of Half Dome in Yosemite National Park twice, and felt alive while cycling many hundreds of miles a year. I loved training with weights, power walking, skiing, kayaking, yoga, and many other outdoor activities.   Like many other women, I made a very poor choice of a first husband, though got a wonderful daughter out of the deal. Raising her by myself with microscopic child support but tremendous family support, I’ve watched…continue reading

My Journey Back to Health: Barbara Wall and RSD

    By Guest Blogger Barbara Wall, Power Over Pain of Arkansas (Note: This is a success story from someone with RSD/CRPS that saw  Dr. Katinka van der Merwe. To read our article on Dr. Katinka van der Merwe's approach, click here). I was living life and enjoying all things around me. I did not feel that I took much of anything for granted. In 2005, I suffered a severe injury to my cervical spine (broken neck) as well as other injuries. As if dealing with a broken neck was not enough I received the diagnosis of Reflex Sympathetic Dystrophy (RSD), today known as Complex Regional Pain Syndrome (CRPS). I had the opportunity to practice as a registered nurse for twenty…continue reading

Trying with CRPS: What Do You Do?

     By Guest Blogger Autumn Strand 687 days ago I was robbed. Nothing of any monetary value was taken but something much more priceless was: my health. When you think about the value of things and what they mean to you, I believe that one's health is often overlooked. That is, until it isn't anymore. Before I fell and got RSD/CRPS, I was a college student studying journalism at the University of South Florida and I loved it. It was challenging in a way that took me completely out of my comfort zone, made me think about things with a different outlook and was the most difficult thing I have ever done but I really thrived on it because…continue reading

DRG Stimulation: The Breakthrough CRPS Treatment Has Finally Arrived in the United States

By Corey W. Hunter, MD Most patients with CRPS can attest to the fact that many of the existing treatments for it are extremely limited.  Recently, Ketamine moved into the spotlight and gave physicians and patients, alike, a great deal of hope that we were getting closer to an answer.  Sadly, the data has been mediocre and insurance coverage remains a problem.  Fortunately, there has been a substantial breakthrough in the understanding of CRPS and how to better treat it.   The dorsal root ganglion (DRG) is a small bundle of neurons located just outside the spinal cord.  Previously, the DRG was believed to be a passive structure with no real involvement in creating or maintaining neuropathic pain.  New evidence,…continue reading

Putting Out the Fire: A Brand New Approach to Treating RSD/CRPS

By Guest Blogger Dr. Katinka van der Merwe Visit the Spero Clinic for more information Dr. Katinka van der Merwe grew up in South Africa before immigrating to the United States when she was twenty. She was formally trained as a chiropractor.  She received her degree in 1999 from Parker College of Chiropractic in Dallas, TX. Dr. Katinka has since expanded her coursework in Neurology, Biological Medicine, and Junctional neurology, focusing on helping complicated and 'hopeless' neurologic cases, using cutting edge techniques that focus on restoring proper junction and balance to the Central Nervous System.  Dr. Katinka is qualified as a Quantum Neurologist and has also studied under Dr. Thomas Rau, MD, clinical director of the world famous Paracelsus clinic…continue reading