CRPS Awareness Day 30: Awareness Must Become Our 365 Day Activity

RSDSA executive vice president and director Jim Broatch details the importance of continuing CRPS awareness efforts beyond November and into the yearBy Jim Broatch, MSW, Executive Vice President, Director RSDSA

Executive Vice President and Director of RSDSA, Jim Broatch, details why it is crucial that we continue our CRPS awareness efforts beyond November. Awareness is a 365-day effort that we must push forward with in order to make positive change in the world of chronic pain.

First, a standing ovation for all who participated in the fourth Annual Color the World Orange (please visit their page by clicking here). It was an outstanding success and is growing exponentially each year. Billboards in Times Square, New York were just one of more than 100 locations in six countries that turned orange for Color The World Orange. Other locations included Niagara Falls and the Trafalgar Square Fountains in London. In addition, a record breaking 76 proclamations were granted in the US and Canada recognizing Color The World Orange and CRPS/RSD awareness. This is truly an astonishing accomplishment that could not have been made possible with people with CRPS and caregivers who proactively pursue opportunities to promote CRPS.

Hats off to RSDSA’s bloggers who shared their personal journeys each day this month. What an inspiration. I was also amazed at the many selfless individuals who asked family and friends to give to RSDSA in lieu of a birthday gift.  We are immensely grateful to everyone who helped to increase awareness of our very little known, rare syndrome.  These November events continued the momentum of years past and brought new hope and support for CRPS

My dream, my unceasing prayer is that someday, Complex Regional Pain Syndrome will become a household name, a name as easily recognizable as fever or measles. It is so disheartening to receive emails and phone calls from individuals with CRPS who have traveled to countless doctors searching for a diagnosis for their unrelenting pain that should have been diagnosed as CRPS by their medical providers. We must do better.

How do we begin?

We must continue to share our stories.  One very effective suggestion is to approach your daily, weekly, regional newspaper and radio and television station and request to speak with the health editor or a reporter about CRPS, explaining that this is the most painful but least known chronic pain condition in the world.  It has been my experience that once reporters become engaged, they are fascinated by CRPS.  As a media resource, you can often remain anonymous or only share your first name if you prefer to maintain your privacy. At RSDSA, we can provide information about diagnosis, treatment, and emerging research.  Ask your health care professional to help too.  RSDSA volunteers and staff are always available for media interviews.  We are always looking for writers as a part of our blog series, #TheTuesdayBurn. It is a great way to start sharing your story (email us your story at [email protected]). Through our partnership with The Mighty, we are also always looking for submissions there that will broaden our reach to those that may not know they are affected by CRPS yet.

Our print and broadcast media are consumed with the opioid epidemic with little mention of people suffering with chronic pain; yet one in three Americans is in chronic pain.  It’s a national tragedy that those living with chronic pain conditions such as CRPS, are misunderstood, lumped together as potential “drug seekers” rather than people living with the highest-rated pain on the McGill pain scale and CRPS is often not recognized as a true medical condition in need of solutions rather labels.   We must amplify our voices and specially call attention to CRPS.

Another way we are helping to create awareness of CRPS is with RSDSA’s two free accredited courses that we have developed for physicians, nurses, and psychologists. We can provide you with flyers about the courses to share with health care professionals in your community or just click here!

Education needs to include not only the health community but also our legislators. We must dissolve the myths and stigmas associated with chronic pain which is a real condition and the number one reason for doctor visits or to seek care in the Emergency Department.

We have also developed easy-to-understand educational brochures which can help you promote CRPS awareness among other professional or lay audiences, such as your employer, local library, religious institutions, etc.:

An excellent synopsis of treating CRPS with physical and occupational therapy

This brochure details the signs and symptoms of CRPS and presents some treatment options

This card describes CRPS from the point of view of a person with the syndrome and some suggestions on how others might help. Cards are free. We only ask for a small good-will donation to defray costs and to support our mission


Make other aware of CRPS by posting RSDSA’s car magnets and proudly wear our t-shirt that’s available in our online store, which you can visit by clicking here.  These make thoughtful and inexpensive holiday and birthday gifts for you and loved ones who support CRPS.

I do not have all the answers, but together we can drive awareness, improve research, and help others struggling with CRPS. Please share with me your ideas on how we can promote greater awareness of CRPS.  You may email me anytime at [email protected].

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

Nurse Beth and Jim Broatch educated other nurses about CRPS. Beth lives with CRPS while fighting against itWritten by Nurse Beth Seickel for the RSDSA Blog

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, was one of the first people we wanted by our side during this. She was kind enough to write about her experience as she is a nurse fighting CRPS while also educating others.

RSDSA was invited to be a part of the American Society for Pain Management Nursing-Long Island Chapter’s (ASPMN-LI) 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. ASPMN-LI’s mission is “to advance and promote optimal nursing care for people affected by pain by promoting best nursing practice. This is accomplished through education, standards, advocacy, and research.”

This dynamic group of nurses and nurse practitioners strives to improve the quality of care for patients living with chronic pain. In 2016, the ASPMN-LI chapter jumped on board to support RSDSA’s First Long Island CRPS/RSD Awareness Walk in Eisenhower Park, NY. Collaborating with the ASPMN-LI chapter enabled the event to host over 225 attendees. Many of whom had never met another with this condition, but they all publicly spoke about their chronic pain due to all the “myths & stigmas” surrounding it.

This year, ASPMN-LI chapter’s board president, Lynn Grimaldi, RN-BC, shared the board’s decision to create a team to support RSDSA’s Second Long Island CPRS/RSD Awareness Walk on September 9, 2017. RSDSA cannot thank ASPMN-LI enough for their continued support for all living with the challenges of CRPS.

On June 2, 2017, Jim Broatch, Executive Vice President and Director of RSDSA, and I were honored to join this dynamic group at their 16th annual conference of pediatric & adult nurses and nurse practitioners, many of whom had never heard of CRPS. Therefore presenting, “Your Patient Has CRPS, Now What?: Insights into Complex Regional Pain Syndrome” was extremely well received.

Despite the fact I lost my nursing career 10 years ago from CRPS, it was a pleasure to share my journey with other nurses as I have a unique perspective being a nurse and
chronic pain patient. In addition, I know how little to no education on chronic pain is provided in nursing and nurse practitioner schools even though nurses are the front runner for providing education and pain relief to their patients. Unless nurses’ pursue additional education on chronic pain conditions such as CRPS, how can any changes be made? This is why the partnership between RSDSA and ASPMN-LI is so important as they are the front runners for all living with chronic pain.

Thankfully, Jim Broatch, who has been there for me the past 10 years, was not only able to do the driving to the conference, but share the presentation in order to minimize my CRPS flares since mobility limitations and medications present numerous obstacles.

However, it was unbelievable the impact that was made. So many nurses and nurse practitioners shared stories of patients they had treated who didn’t have a clear diagnosis, despite extensive diagnostic tests. Looking back now, they can see the many symptoms associated with CRPS that were present and unrecognized. Many felt overwhelmed by the enormous impact CPRS has had in both adults and pediatrics and wanted to learn more. Some provided empathy for what CRPS brings to patients’ lives and how patients can best be served in a variety of settings.

We had many RSDSA resources available and they were absorbed like sponges! A few RSDSA resources include:

For me, it was a pivotal moment to share a unique perspective as a nurse and a chronic pain patient. Maybe this is why I developed CRPS?

Thank you ASPMN-LI for partnering with RSDSA whose mission is to provide support, education & hope to all affected by the pain and disability of CRPS/RSD, while driving research to develop better treatments and a cure.

Please consider making a donation to RSDSA today.

New Year, New RSDSA Goals – Helping the CRPS Community

RSDSA hosted the first Ketamine: The State of the Art and the Science Conference in 2016 for CRPS / RSDBy Samantha Barrett, Special Events Coordinator

Welcome, 2017! So many of us were ready for a new year. With the new year comes expectations of resolutions, bettering oneself, and change overall. Not only is RSDSA no different than everyone else, but we also want to help people reach their goals/resolutions and then some!

As you may have seen in our emails, we have a set of initiatives for 2017 here at RSDSA. They include:

  • Co-sponsoring Camp for Courageous Kids- a camp for youngsters in pain for our third yearRSDSA cosponsored pediatric pain week at CCK for kids affected by CRPS RSD EDS and more
  • Continuing to transform lives with our “Treating the Whole Person Conferences,” the next one is scheduled for Nashville in April 2017, as well as utilizing our live-stream
  • Implementing our first statewide three-part Webinar for The Nursing Association of CT and the ARNP, Nurse Practitioners, whose pilot will be replicated nationally
  • Providing the CRPS community with cutting-edge scientific information readily available via our website and conference videos
  • Fostering self-advocacy with mentoring and peer-to-peer counseling
  • Updating a comprehensive resource compendium for individuals struggling to survive financially and to improve their quality of life
  • Continuing our college initiatives for students with CRPS, including publications geared specifically for them
  • Hosting a first-ever retreat for young adults, a pilot program which we plan to replicate nationally
  • Developing a reference protocol for professionals utilizing IV ketamine to treat intractable CRPS
  • Partnering with medical device manufacturers and pharmaceutical companies in their clinical trials
  • Offering complementary approaches to healing through our educational conferences
  • Facilitating support groups and raising awareness, promoting events across the country

So, how can you help this new year?

  1. Follow us on social media to stay up to date with all things RSDSA. You can even share our updates with your social media friends and followers to help us spread the word. (Facebook, Twitter, Instagram, Pinterest, YouTube)
  2. Donate to RSDSA and encourage the people you know to donate to help us work towards our initiatives
  3. Attend RSDSA events- whether they are our educational conferences or our walks throughout the country, being at these events is so important. For many members of our community, it is the first time they meet others with CRPS/RSD. You can find out more about our events, such as our Nashville conference, on our website or on our social media pages. Some events are exclusively online, which makes it fantastic if you cannot make it out one day.
  4. Adopt Penny Pig. Penny Pig helps us with our kids’ camp. This camp is for children living with various chronic pain syndromes, including CRPS/RSD. We co-sponsor this camp and have been lucky to do so for the past couple years. All you have to do is send us an email at [email protected] and we will send you a pig. We ask that you collect change and spare cash and send it in (via check or PayPal) and we will apply it towards the camp. You get to keep the pig.
  5. Sign up to be a part of our 20-year study. This information is incredibly valuable to us and will help us learn even more about CRPS.
  6. Hold a fundraiser. Contact Samantha, RSDSA’s Special Events Coordinator, to start planning your event. She will help lead you in the right direction. Whether you want to plan a walk, dance-a-thon, restaurant night, sales fundraiser, or anything else that you can dream up, we will do our best to help you!
  7. Join or start a support group! Meet others with CRPS/RSD and become a part of each other’s support network. Information can be found on RSDSA’s website and by emailing [email protected]
  8. Share the link to RSDSA’s accredited courses with your team of doctors and nurses. They will get credits that they need while learning more about CRPS/RSD.
  9. Submit a blog for RSDSA’s hit blog series, #TheTuesdayBurn. Is there a topic that you’ve wanted to write about, but haven’t gotten a chance to do yet? This is your year! We ask that all potential guest bloggers send an email to [email protected] with their blog idea(s) and any sample of writing they’ve done in the past (if applicable). We will provide more information from there! You can also submit stories to The Mighty, whom we have partnered with over the past year. They link stories about CRPS/RSD back to RSDSA so people can find us as a resource!
  10. Watch RSDSA’s YouTube videos and Livestream. YouTube features educational videos from past conferences while we Livestream conferences as they are happening. Our Livestream is very interactive and allows you to take part in the conference, even if the conference is in Tennessee and you live in Washington!
  11. Donate extra medical equipment you have to our medical equipment exchange. Someone out there is looking for a wheelchair, a cane, a scooter, and even other things that you may have extra of. If you just upgraded to a different device, put the old ones to good use!

People and Paws for a Worthy Cause was put on for RSDSA in 2016 to help those with CRPS RSD

Elly Thompson held another event for RSDSA and people affected by CRPS / RSD in 2016

RSDSA had a conference in La Jolla, California for people affected by CRPS RSD. Here are Taylor Mullens, Samantha Barrett, and Kerry Hussey at the conference

CRPS Awareness Walk in New Jersey for RSDSA in 2016

RSDSA held a conference for medical professionals about the use of ketamine in people with CRPS RSD








Do you have another idea on how the RSDSA community can help us reach our initiatives and can help make our 2017 a better year? Send us an email or comment on our posts! We’re always interested in hearing your ideas.

From all of us at RSDSA, we hope you have a great 2017 and we hope to see you out at one of our events!

Developing CRPS/RSD and Finding Hope

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 a little scared of what you may think of my journey.

You see, about a year ago a link to my story was shared on the RSDSA Facebook page, and there were several negative comments shared along with it. As a DIY blogger, I like to think I have a thick skin when it comes to the opinions of others. However, when it came to sharing my personal story I realized my skin may not be so thick after all.

For me it all began with a game of volleyball with friends. The next day I had a bruise on my right wrist but didn’t think much of it. Within a few days I was no longer able to use my right hand for the simplest of tasks, and the slightest touch was more painful than I could bear. The temperature difference was probably the strangest part, as my right hand was now ice cold in comparison to my left.

I had to readjust my computer station at work so that I could move my mouse and type with just my left hand, and I remember how difficult it was to push through the pain each day. The sympathy glances I received from coworkers was uncomfortable, and I lost count on how many times people asked if I had carpel tunnel.

Several weeks and doctor visits later, I finally had a diagnosis, CRPS.

Unfortunately, I was also told that there was no “cure,” just treatment that would help subside the pain. My first thought was if I would ever be able to have children, or hold a baby. It was difficult to imagine these things when I couldn’t walk my dog or peel a potato. There was no holding back tears as I feared for an uncertain future. I was prescribed some pain medication and referred to both a pain specialist and a physical therapist that I would now need to visit several times a week. My husband was my rock during this entire process, and was always there with encouraging words to help me remain positive. I told myself over and over that I would recover from this all very quickly. After all, if there was no timeframe for my hand to start functioning again, that meant it could happen any day now, right? I am a strong believer in mind-body control and had to remind myself not to worry about the future, but focus on the present moment. I practiced my hand exercises several times a day while telling myself “this feels good” every time I used my hand, and to my surprise, it did. There were moments where I had to stop, take deep breaths, close my eyes, focus on being present, and then start again but I improved every day. It may seem ridiculous to some but I believe I “tricked” my brain into thinking everything was okay, and that helped me overcome both my fear and my pain. It’s been 3 years since I was diagnosed and do I still have pain? Yes, but I’ve learned how to manage it without medication. Is the temperature in my hand still different? Yes, almost daily. Do I remain positive? Absolutely! My hand still gets weak while working on certain projects, when I spend too much time on my phone {booooo}, or from typing away on my computer {which is practically every day}, so I make sure to take breaks and practice my hand exercises. I also keep a portable heater and heating pad next to my computer and use those almost daily. In fact, my portable heater is on right now as I write this. Sometimes I feel guilty for not being as active in the RSDSA community, but the truth is I don’t like to talk about my situation too much because every time I do, the pain comes racing back and fearful thoughts quickly enter my mind. This started to happen when I thought about sharing my story here, but rather than drift off into negative thoughts about how this pain could impact my future or get scared that it may get worse or never go away, I took some deep breaths and reminded myself to stay present. A few moments later the pain subsided. You can call me a weirdo or crazy, but I am a true believer in the power of positive thinking, and being in “the now”. This doesn’t mean it always comes easy, but I know that I have control over my thoughts and that positive thoughts lead to positive outcomes and visa versa.

The best advice I could give someone going through this is to stay present. Don’t think about how this happened, don’t worry about what affects it could have on your future, and as difficult as it may be try not to think about the pain you may be going through. Instead, take a moment to take in all that is around you, take a deep breath and focus on what you see, what you hear, what you smell, and tell yourself you feel good. This may seem awkward or feel like a lie at first, but keep repeating it to yourself and pretty soon you will know it to be true.

I’m sure I will receive a lot of judgment on this and that’s fine. This is what works for me, and if I can give hope to just one person that is reading this, then it was worth it.

I was lucky to be diagnosed pretty early on, and for that I am grateful. There wasn’t a lot of information available 3 years ago, there still isn’t enough available today, and I think it’s important to raise awareness and bring optimism to others who have been diagnosed with CRPS, or know someone who has.

The truth is, being diagnosed with CRPS made me realize that life is too short not to be doing what you are passionate about, and I’ve been following a creative path ever since. I feel so blessed to be doing what I love, and for this reason I donate 5% of my proceeds from invitation sales to the RSDSA.

You can read more of my story here, and feel free to email me with any questions.

Remember, if there is a will, there’s a way, and all that matters is this moment. Right. Now.