Category: RSDS General Info

This summer, we’re taking the time to introduce the RSDSA team to our Warriors and their families so you can know the names and faces behind our organization.

What is your name and title?

I’m Jeri Krassner and my title is Special Events Coordinator.

How long have you been with RSDSA?

I’ve been with RSDSA for five months. I am on a steep learning curve about CRPS/RSD and I have so much more to go.

What is your favorite part about working with RSDSA?

My favorite part about working with RSDSA is meeting the individuals and families in the community and how they persevere despite their pain.

What’s the coolest thing you’re working on right now?

The coolest thing I’m working on right now is RSDSA’s Longest Day of Golf.

What is your favorite quote?

I am going to give you a quote and one of my favorite poems.

My favorite quote – Therefore, send not to know
For whom the bell tolls, It tolls for thee.

The Red Wheelbarrow – William Carlos Williams

so much depends

upon

a red wheel

barrow

glazed with rain

water

beside the white

chickens

What are you passionate about?

I am the most passionate about social justice.

Where is your favorite place in the world?

I love to travel, so I don’t have one favorite place in the world. I love Italy, England, and South Africa.

What do you enjoy doing in your free time?

I have guilty pleasures like I enjoy watching old movies, watching TV, baking and reading.

Share a fun fact about you. It can be personal or related to RSDSA.

I love watching dance, like ballet and the show So You Think You Can Dance. In my next life, I’d like to come back as a show dancer.

Keep an eye on the RSDSA blog for more from our team all summer long!

Did you know that you can host virtual fundraisers for RSDSA on Instagram similar to how so many of our Warriors host them on Facebook?

Check out our easy step-by-step guide to adding the donation sticker to your Instagram Story via the mobile app:

• Login to your Instagram account.
• While on your timeline (the feed where you see photos and videos from your followers) click on the camera in the top left-hand corner to access your camera. You can also swipe to the right.

• This is where you will begin designing your story. From here, you can do a few different things depending on your style:

1. 1. Take a selfie or a photo of your choice.
   2. Swipe up on the screen and pick a photo from your camera roll.
   3. Take a random photo, click the pen icon in the top right-hand corner, select a color, press down on your screen until the entire screen is filled with that color, and then hit done. For this tutorial, we’ll go with option number 3.

• Once you have the photo or screen color of your choice, swipe up in the Instagram app and hit the “Donation” button.

• From there, search for RSDSA or select our name from the Suggested For You menu. Remember that our official Instagram handle is @rsdsa_official.

• On the next screen, feel free to edit the “Help Support RSDSA” sentence or keep it as is.

• Click the “Your Story” or “Your Stories” button in the bottom left-hand corner to share with your followers.
• From there, your followers will be able to donate to RSDSA! The Story will stay up for 24 hours unless you add the Story to the Highlights section of your profile where it will live forever.

This summer, we’re taking the time to introduce the RSDSA team to our Warriors and their families so you can know the names and faces behind our organization.

What is your name and title?

I’m Pamela (Pam) Kientzler, and my title is Administrative / IT Support.

How long have you been with RSDSA?

I’ve been with RSDSA for a little over eight years. Before RSDSA, I worked for an insurance owned broker dealer / investment advisor for 20 years and worked from home for the last five years after moving to Connecticut in 2002. After retiring, I worked various jobs until I landed here at RSDSA in 2011!

What is your favorite part about working with RSDSA?

I would have say that every day is different. When I first came to RSDSA I had no idea what RSD/CRPS was, so over the years I’ve learned a lot about this syndrome and love when I can help the person on the phone that needs support and help. I may be the only person who will listen to them and hopefully offer them some assistance. I also like the variety of things that I do on any given day such as managing the RSDSA website, creating graphics, preparing Constant Contact emails, etc. There is never a dull moment in the day.

What’s the coolest thing you’re working on right now?

Warriors are always looking for local Support Groups and RSDSA has a page dedicated solely to them. When a person contacts RSDSA and says they’ve emailed a support group with no response or the telephone number and email does not work, I decided to contact each support group and see if they were active or not. If they are active, I’m making revisions to their information. This has been quite an undertaking.

If you are a support group leader, or have been in the past, please visit our Support Group page and see if you are still listed. If you are still listed and no longer active or have revisions please contact me at [email protected]

What is your favorite quote?

I’m not really a control freak but… can I show you the Right Way to do that? – Pamela Kientzler 🙂

What are you passionate about?

At this stage in my life, my husband, Gary, and our family. I have a son, a daughter, and six grandchildren ranging from 4 to 21 years old. I’m also a CrossFit enthusiast and love working out!

Where is your favorite place in the world?

Home is my favorite place. We’re lucky to live across the street from the Long Island Sound with a beautiful view. Next would be visiting my kids in New York and Pennsylvania. Lastly, would be Alaska, Germany, and Australia. The latter is a very, very long trip but totally worth it!

What do you enjoy doing in your free time?

Taking care of my home, spending time with family and friends, sitting/walking on the beach on a beautiful sunny day or better yet when it’s raining outside. I’m also a runner of sorts and try to out at least three to four times a week.

Share a fun fact about you. It can be personal or related to RSDSA.

I’m a little OCD… well a lot OCD, but I call it organized. I love being organized and knowing I drive people crazy.

Playing Candy Crush and Candy Crush Saga is also a hobby of mine and is all my daughter and granddaughters fault as they got me hooked! I also enjoy learning new software on the computer, it’s like playing to me.

I’m really into alternative medicine, healing, and doing things as naturally as I can. I’m in the process of learning Emotional Freedom technique (EFT) or tapping, using essential oils. Lastly, I’m a Reiki Practitioner, level one and two certified!

Keep an eye on the RSDSA blog for more from our team all summer long!

Written by Kristi Oen for the RSDSA blog.

Editors note: TSA also has a toll free line for travelers who need extra assistance.

Are you ready to fly away for vacation but you are slightly terrified of what your CRPS is going to do and how you can handle that?

Well, let me give you some tips!

Hello everyone. My name is Kristi Oen and I am a CRPS Conqueror and the founder of P.A.I.N. Help. I have had CRPS (Complex Regional Pain Syndrome) since I was 10 years old. That is 33 years of CRPS and figuring out just what the heck I can do with it. Therefore, I have come up with quite a few of my own little CRPS life hacks.

A lot of people are preparing to fly due to great vacations, but your CRPS can make a difference on whether you decide to travel or just stay home. Let me give you some of my top tips for flying with CRPS.

My first tip is actually to just prepare.

The more you prepare ahead of time and have a plan for the airport, the plane, and every possibility along the way, the less stress you are going to have.

In case you did not know, the more stress you have, the more your pain and your CRPS pain usually goes up.

This happens because you are putting yourself in fight or flight mode, which is that nervous system reaction where you are “freaking out” and your body becomes more tense and constricted. If you are more constricted, you are reducing your blood flow which means less oxygen getting in and that feeds your pain factor.

So how do you prepare? What’s the first thing you should prepare for?

Call the Airline’s Special Assistance or Disability Hotline

You can call the disability hotline and ask for a couple specific things. One of those you absolutely might want is a wheelchair. There are times I would try to not use a wheelchair because using it messed with my emotional state, but often I would regret not using it or have to get it later.

Should you use a wheelchair?

If you are in a wheelchair, you avoid getting bumped and touched as much. Additionally, most of my life I only had CRPS in my legs and not my full body. When you are walking, you never quite know what is going to happen with the CRPS in your leg and how things are going to feel or if you might aggravate it.

You may also have no idea how far the terminal is, so why risk that? You can bring your own wheelchair that can then be stored underneath the airplane or you can ask to have one of their wheelchairs. Either way, you can be pushed by one of the airline attendants that you tip a couple of bucks.

Are you taking any medical devices with you?

A godsend is taking my wellness device with me and using it while I am on the plane. It increases the blood flow, keeps me from swelling up, keeps the pain from going up, etc. So when you are calling the airline or booking your flights be sure to say you are bringing a medical device.

Fun Fact: Medical devices fly for free

I do have a note from my doctor about the medical device just in case, but I have never actually had to show that piece of paper. My medical device flies in the main cabin in its own carry-on bag for free. I bring it with me on the plane because I know that it is a lifesaver.

Get Special Seating on the Plane For FREE

A lot of the airlines now you have to pay to have certain seats, especially the ones near the front. So what we usually do is we buy the tickets online. Then I call, and say I need the wheelchair, I’m bringing a medical device and can you move our seats up near the front? Because walking was difficult most airline will accommodate you for free; your caregiver, and traveling minors.

What is the best seat for you?

With your disability, you will have a chance to pick your seat. Think about what makes you most comfortable. If your CRPS is on your left side or your right side, would it help to be on the right side of the plane, the left side of the plane, a window, or an aisle. Think about what makes it best for you. And then ask for it. Remember you have a condition that can really get aggravated easily, you have a right to be as comfortable as possible.

Don’t feel guilty or embarrassed about using the options that are available to you.

If you did not know about those opportunities, you absolutely want to take advantage of those options.

What are your key CRPS survival items?

You need to make sure you are bringing the really important stuff, the things you know work to help chill out your body. You want to keep calm, not get aggravated and keep yourself from things that cause a flare.

For me, I know I would have various pillows and even blankets since I would get cold. With my CRPS I am very texture sensitive so it was important to bring my own that worked for me. I use the pillow to prop my leg up so I can get some comfort.

What are the things that you need to bring on the plane?

I would highly suggest both earbuds and ear plugs. Earplugs, because sometimes with my CRPS I didn’t want to hear any noise. Sounds combined with stress where a sure fire way for my CRPS to create  fire burning sensations throughout my body. And then other times I wanted the music, perhaps to meditate. I have some meditations you can listen to or use meditative music or something relaxing that can help you chill out as well as keep out the noise of the plane and passengers.

What can you do to help before you get on the plane?

I am not super proud of these, but you have got to do what you got to do sometimes. Drink a little wine on the plane, have your CBD oil, or use your medications. I don’t like taking any of those things, but when you have extreme situations, you have to do what is best for you. You have to weigh taking those things versus maybe going into a flare or things becoming much worse. If things get bad, you could even ruin your vacation. In the past, it would basically be a couple of days before I could do anything because flying messed me up so much.

Now that I have my wellness device, I do not get that kind of setback. You have got to find what works for you because it has to be worth it. Is the vacation worth it if you get off the plane and lay there for days and cry with the pain? I have skipped vacations in the past for this reason. So find your tools and bring them. Make sure you keep them close by on the plane, a CBD oil or spray or something that really helps you like an essential oil. I like using peppermint oil which helps take the edge off the pain by just to smelling it.

Can you bring a travel companion?

If you can have a travel companion it makes life so much easier. This person can push you around, handle tasks, take the load off, and take the stress off.

Another thing that I really like when I’m on the plane is to pump my feet.

Pumping your feet is when they are flat on the ground and then you proceed to moving your toes up and down, keeping your heel on the floor. This helps with moving the lymphatic system. Moving the lymph in your feet helps reduce some of the swelling and some of the pain that you might get. My CRPS was mostly in my legs and the swelling and pain from being swollen was intense.

When you’re flying, think about the things that really help you be more comfortable so you can enjoy the flight and enjoy your vacation.

Make sure you bring your CRPS card from the RSDSA. It is a little card that has information about having CRPS and what that means

There is also a special card from TSA that you can use to get special assistance. You do need to call 72 hours in advance and print this card out

CRPS can be a challenge whenever you are doing anything. Do the best you can to use these hacks to help you out. Find the things that help reduce your pain and flares and what works best for you.

Please consider making a donation to RSDSA today!

Written by Melissa Wardlaw for the RSDSA blog.

In my work as a CRPS/RSD, Chronic Illness & Pain Peer Counselor/Advocate, many patients contact me for assistance and support – particularly those who are newly diagnosed. After speaking with CRPS patients, I usually send them a list of resources they may find useful.

As we all know, there is a lot of propaganda online about CRPS, and navigating the web or “Dr. Google” can be a very scary thing sometimes. Unfortunately most physicians are unfamiliar with CRPS, so in lieu of asking them for advice, sometimes we have no choice but to turn to the web or our peers to try and find out all we can about the disease.

Below I have pasted some links to resources I have found helpful over the years for newly diagnosed CRPS/RSD patients, as well as those who have been dealing with CRPS/RSD and chronic pain for any length of time.

RSDSA & RSDHope Articles & Resources

RSDSA is the leading national organization on CRPS/RSD and one of its kind. Both of these organizations provide unparalleled information and support for CRPS/RSD patients. You can also sign up for the RSDSA newsletter. Although RSDHope is no longer in active operation, the information remains on their website as a courtesy to patients.

“You’ve Been Diagnosed With CRPS/RSD. Now What?”

CRPS/RSD Informational Brochure

“15 Tips For Healthcare Providers Treating CRPS/RSD” (self-promotion here!)

Articles from “The Mighty”

You can sign up for multiple categories including CRPS/RSD and have articles sent directly to you each week – you can even sign up to be a contributor yourself! 

“To the Patient Who Just Received a Complex Regional Pain Syndrome Diagnosis”

“What It’s Like Living With Complex Regional Pain Syndrome, the ‘Suicide Disease’”

“A Letter to My Former Self, Before I Became Ill”

“6 Things I Would Tell Myself When I Was First Diagnosed With CRPS/RSD” (self promotion here!)

“8 Questions to Ask Your Doctor Before an Invasive Medical Procedure” (self promotion here!)

YouTube Channels/Videos 

RSDSA’s YouTube Channel

The CRPS Network Channel

CRPS Forum Channel

Conspiracies Against Wellness Channel

“The Other Side of Opioids”

“What we Lose When We Undertreat Pain” – TedTalk Video by Kate Nicholson 

“Trial By Fire” CRPS Documentary 

“The Painful Truth” PBS Chronic Pain Documentary

Blogs

You can sign up for most of these blogs to receive articles and content daily or weekly

“Tips on How to Handle CRPS” 

“My Top 5 Strategies for Dealing with a CRPS/RSD Flare” (self-promotion here!)

“Learning Acceptance for CRPS/RSD & Chronic Pain”

“How to Practice Mindfulness for your CRPS/RSD”

“So You’ve Been Diagnosed With RSD and/or CRPS… What Now?” 

http://www.tamingthebeast.ca/so-you%27ve-been-diagnosed-with-rsd-and-or-crps-what-now.html

Motivational Blog – Multiple articles on chronic illnesses/pain

CRPS/RSD Blog 

“A Letter From Your CRPS”

Additional Resources & Links

Many of these resources have newsletters or programs for which you can sign up to receive additional articles and content 

Articles about CRPS/RSD – Practical Pain Management 

“Putting Out The Flames Of Complex Regional Pain Syndrome – Updated Guide to CRPS/RSD”

“How to Cope with Flare-Ups & Setbacks of Chronic Pain – With Tools to Help You Recover” 

“Living With CRPS”

“A Letter To Those Newly Diagnosed With RSD/CRPS”

“Treating Reflex Sympathetic Dystrophy (RSD)”

“7 Chronic Illness Podcasts To Get You Through The Day”

“Staying Connected With Friends While Ill”

U.S. Pain Foundation 

For Grace – Foundation specifically for women with chronic pain started by Cynthia Touissant, who has had CRPS for 36 years!

Pain News Network 

“The 7 Psychological Stages of Chronic Pain”

“The Top Pain-Fighting Vitamins”

“5 Ways to Live Well with Chronic Pain and Illness”

“Complex Regional Pain Syndrome: It’s Complicated”

The Spoon Theory

“Systemic Complications of Complex Regional Pain Syndrome”

Hopefully some of these resources will prove to be worthwhile as you navigate your way through being newly diagnosed with CRPS/RSD and chronic pain (or even living with it for many years). I always recommend joining a few groups on Facebook as well. It’s beneficial to be a part of a few large national groups online, and also small local ones (if available in your area) to meet others in person if possible. I would be interested to know other resources you all have found too!

Take care on your journey and GodSpeed, my fellow Chronic Illness and Pain Warriors!

Melissa Wardlaw was diagnosed with CRPS/RSD as a result of a spinal cord injury (non-paralyzing) suffered during a routine medical procedure. She also suffers from fibromyalgia, lumbar and cervical degenerative disc disease, migraines and additional chronic medical issues. Formerly a Business Executive/Consultant with an MBA in Entrepreneurship, she is also a Certified Career Coach and Certified Professional Resume Writer, and now spends her time career coaching and offering peer counseling/advocacy (pro bono) to those dealing with similar medical struggles. As a fierce advocate, she also runs both in-person and online support/empowerment groups for CRPS/RSD and chronic illnesses/pain in the Metro Atlanta area. A “fur mom” to two cats, Melissa is an avid volunteer and supports multiple organizations committed to rescuing animals and helping those with chronic illnesses/pain. She can be reached at [email protected].

Written anonymously for the RSDSA blog.

A guide of what not to say to someone with an invisible disability.

This post is written with the best intentions, directed to educate, not judge nor shame people who may not have sensitivity to topics they not know about. But I would like to touch on the topic of invisible disabilities, more specifically Reflex Sympathetic Dystrophy (RSD).

Having an invisible disability can be very challenging, similar to disabilities that can be seen to the eye. People tend to not understand and think you are faking something you wish you never had. But looking in from their shoes, you can see where confusion may lead them, and they may not be informed before they speak.

Coming from a person who has lived their life with an invisible disability, it is heartbreaking, and not just the pain aspect. There is a daily struggle of trying to explain what RSD is, and not having others understand, or leading to unjust comparisons.

Frequent comments I seem to receive consist of, “You are always crippled,” “Just go to physical therapy,” “At least you don’t have this,” “Why is something always wrong with you?” and many more. Little do they know, these unintended insults can hurt just as much as what someone who has RSD goes through on a daily basis. I do not want to be looked upon as weak. I am strong, I try not to show pain, and when I do, I am at a low. Please do not make a snap judgement and say the hurtful words that there is something always wrong with me. I do not want this disorder, and I would rather not feel insecure about myself for having it. It is a part of me, and a part I have grown to love and accept.

However, I find myself often in flare ups, and just tell people, “Oh I fractured my leg” or “I sprained my arm.” But why do I do this? My intention is not to lie or to deceive, but to save both of us the struggle of going into depth about what it truly is that I have. The worst comment however, is a comparison like, “Oh I know what you are going through, I was in a brace for three weeks.” No matter the circumstance, whether you are ill, have a slight cold, or any impairment, should a comparison be made. It can make a person feel small, and belittle what they may be going through. For someone who has been blessed to experience little pain in their life, a cold may seem like the end of it all. Allow that person to feel that way. Judging someone for something you may not understand is never an answer.

Instead, ask what you can do for a person. Showing someone you care and you are there for them under any circumstance is the best advice or comment you can give. As I get older, I find more and more people who are willing to have this attitude, rather than jump to conclusions. In addition, a small bump or tap can cause a person with an invisible disability severe pain. These winces are not for attention, and no we are not being dramatic. Be kind. Through personal experience, judgement is the most hurtful thing someone can do. Show compassion, become educated, and be there for those who appear strong on the surface, but may be weak on the inside.

Written by Richard Heuser for the RSDSA blog.

I was at the 76 mile point of a 100 mile bicycle ride in the Delaware Water Gap area of New Jersey going down a a steep incline at about 44 MPH. When I tried to break the handlebars rotated down and I went off the front of the-bike as if I were diving off a diving board. I have a mental picture of being airborne above a shiny guard rail and the thought, “I do not want to hit it” going through my brain. They told me that I skidded about 35 feet on my face and hands, and I woke up under a guard rail. I could not feel my legs. I began to panic. A voice in my head said, “Do not panic – find out what is wrong with you and then do everything you can to get better.”

I had a helicopter ride to Morristown Trauma Center where they stitched the wounds and later repaired the broken bones. My hands were like paws from being dragged on the pavement and I had lots of road rash on my legs. I also had a concussion but thank God I was wearing a helmet.

While recuperating at home I went to an orthopedic doctor who started me on physical therapy. The pain in my hands and legs did not go away, but increased. The doctor did not believe that I was doing the prescribed exercises and was unfamiliar with RSD. After researching my condition, my physical therapist suggested that I had RSD and started treatment. Unfortunately, it was pretty late and the RSD was in both of my hands and in one leg. The discomfort was such that if the water from the shower or if someone touched the problem areas, the shock wave and pain would be intense. I called it the “first touch.” Eventually the “first touch” lessened, but it took months even with the desensitizing activities at physical therapy. My hands felt and still feel like they are in a vise.

One of my sons was living in San Antonio, Texas and sent me an article from the newspaper quoting a doctor from there. The doctor’s advice was, “Do not think about the RSD or the pain or discomfort. Do not talk about it, even to you family. Just keep moving ahead, little by little, doing what activities you can.” I followed this advice and recommend it to others with RSD. It is not easy to do, but I believe being active and pushing the envelope worked for me.

The summer after my accident I built a deck off of my kitchen. It took all summer, because using tools was painful, but I did accomplish it!

I still have RSD. I go for acupuncture treatments about once a week. They help. I work as a surveyor doing inside drafting and outside surveying. I have a garden and I still ride a bike, but nothing nearly as fast as September 1995. I know I have RSD, but I try and keep it in the back of my mind. I do not talk about it and try not to think about it. My hope is that the advice I received will work for someone else.

Please consider making a donation to RSDSA today!

Written by Debbie ONeal for the RSDSA blog.

When you are diagnosed with CRPS, which is ranked as the most painful chronic pain condition known to man, you wonder why more doctors are not aware of what it is or how to treat it. You wonder why there is not more research being conducted and why there is not a specific treatment to help control the pain, especially since CRPS was first seen and diagnosed during the American Civil War.

How can we rectify this? How can we help make a difference?  My co-chairs, Beth Seickel, Stacey Udell, and I had the idea to bring together those who have been diagnosed with CRPS and the medical community through a walk to raise awareness of CRPS. We want the CRPS community to know what types of treatments are currently available to them by having the medical community, as well as others, available to answer questions and concerns.

The event I am referencing is now known as the RSDSA Long Island CRPS Awareness Walk & Expo and 2019 marks the fourth year of the event!

With that being said, we knew this event could be so much more than just a walk. Keeping in mind that many of us with CRPS would not be able to participate in the actual walk themselves, we decided to offer breakfast during registration and a barbeque following the actual walk. We set up tables and chairs so everyone who attended could mingle or just hang out with their families and friends. We wanted everyone to always feel welcome.

We wanted our sponsors to each have their own table and a place where people could sit down and feel relaxed when talking to the sponsor representatives. Beth, who we often refer to as Nurse Beth, put together an education center where people could learn more about what CRPS is and provide more information about our shared condition. We felt it was so important because CRPS patients, more often than not, have more knowledge about CRPS than people in the medical field. This is something we hope to change.

A craft center was available for both children and adults. Last year we added a photo booth with props, which turned out to be a huge success. Another favorite was the wonderful raffle baskets that contained a variety of products such as Broadway tickets, concert tickets, and sports memorabilia donated by local and national businesses. Seeing people enjoying themselves made all the work we put into the walk worth it.

Jim Broatch, the Executive Director and Vice President of RSDSA, opened our welcome ceremony. This was followed by a few speakers who treat people with CRPS. We also invited people with CRPS and their family members to speak. After the welcome ceremony, everyone headed to the balloon arch for a group photo.

It was wonderful to see everyone enjoying themselves with smiles on their faces, especially when reaching out to our sponsors. When we saw people walking around the Education Center and gathering at the sponsor tables, we could see the importance of this walk for our community.

It truly is the most wonderful feeling to see the friendships that have been formed in the CRPS community through these walks. It sends a message to this community that you are not the only one who suffers from this condition. To talk to someone who truly understands what you go through on a daily basis is comforting and meaningful.

None of this would have been possible without our sponsors or the donations we received or our many volunteers who worked tirelessly to make this walk possible. Among some of our volunteers were Hofstra University students, Nassau County Police Dept., the Levittown Fire Dept, Local Girl Scout Troop 2425 Massapequa Association, as well as family and friends of those with CRPS.

Thanks to all the donations we received and our sponsors, RSDSA received 95 percent of the walk proceeds. This, in turn, helps RSDSA continue to support their mission statement which is to “provide support, education, and hope to all affected by the pain and disability of CRPS, while driving research to develop better treatments and a cure.”

Last year was our most successful walk, which had over 500 people attend. We hope to raise the bar again this year and, with your help, we can do it! For one, attending the walk provides a wonderful opportunity to meet Jim Broatch. If you cannot attend, you can still make a team to show your support for RSDSA.

We are also so thankful for the women who work in the RSDSA office. Their constant support and encouragement is always appreciated. For my co-chairs and me, it is sometimes challenging to bring everything together, having to battle CRPS and the side effects that come with it. Somehow, we persevere and seeing everything come together makes the challenges worth it!

This past year, we had teams from North Carolina, Rhode Island and the Tri-State area as well as other parts of the country. We look forward to seeing last year’s attendees again this year as well as welcome all you who will be attending for the first time. If you cannot travel, you can still be a part of RSDSA’S Premiere Walk by starting a team for your families or your town. Help us reach this year’s goal of $75,000!

If we are ever going to find a cure and better treatments it has to start with all of us. Take a moment to register for the 4th Annual RSDSA Long Island CRPS Awareness Walk & Expo on Saturday, September 7, 2019.

To see updates for the walk, please join our Facebook Group, RSDSA Long Island CRPS/RSD Walk.

As always we like to thank our sponsors and donors who help us achieve our goals.

Please consider making a donation to RSDSA today!

This summer, we’re taking the time to introduce the RSDSA team to our Warriors and their families so you can know the names and faces behind our organization.

What is your name and title?

I’m Jim Broatch and I’m the Executive Vice President and Director of RSDSA.

How long have you been with RSDSA?

I’ve worked for RSDSA for 20 years, first in Haddonfield, NJ and then when it relocated in Milford, Connecticut. I moved the office to my hometown when Roe and Frank Davis, two of the RSDSA founders retired. Each day, I walk to work with Murphy my beautiful and loving golden retriever.

What is your favorite part about working with RSDSA?

That each day, I’m given the chance to help people. Every day is different. It is a blessing. I have gotten to meet a lot of angels over these years. I work with an excellent team and I’m guided by a passionate, committed Board of Directors. Working for a small organization allows you to quickly conceive of a project and then implement it.

What’s the coolest thing you’re working on right now?

An emergency department educational initiative. Going to the emergency department to seek relief for a nasty CRPS pain flare-up is a roll of the dice. You do not know how you will be treated. Too often you are perceived as a “drug seeker” and you’re dismissed without any effective intervention.  We want to test the effectiveness of a Medicalert advantage plus plan which will allow individuals to store online valuable medical information generated by you and your medical team which can be easily accessed by the emergency department to “legitimize” and hopefully guide your visit.

What is your favorite quote?

“You serve each person as perfectly as you can, knowing that this may be the only opportunity that you have to do this.”  – Robert P. Maloney

What are you passionate about?

My family, my faith journey as I’m trying to be a Christian, my work, birdwatching, being an advocate, and a good citizen, and soccer (or football as the rest of the world calls it!).

Where is your favorite place in the world?

Home is easily my favorite. Second is Italy, third is Fenway Park, and fourth is San Diego.

What do you enjoy doing in your free time?

Being with my family, reading, kayaking, birdwatching, cheering on the Boston Red Sox, and participating in the Beloved Men’s Ministry at my church

Share a fun fact about you. It can be personal or related to RSDSA.

When my wife and I were dorm parents at an alternative school in East Haddam, I canoed the entire 410 miles of the Connecticut River from Canada to Long Island Sound with 15 teenagers.

Keep an eye on the RSDSA blog for more from our team all summer long!

Written by James Doulgeris for the RSDSA blog.

August 30, 2018 is the first time I ever heard the letters CRPS, and they are four letters I can assure you that you will never want to hear preceded by “You have …” as I did. This is not my story, but one about the challenges of sufferers of little understood orphan diseases told by a healthcare professional.

CRPS stands for Complex Regional Pain Syndrome, formerly known as Reflex Sympathetic Dystrophy, or, RSD. There is another, more sinister, name for it, “The Suicide Disease.”

I’ll get to why shortly.

It’s now ten months later and I push through day by day. In my work as a healthcare executive and now life as a patient, I deal with a lot of doctors. Those that know, ask, or find out that I have CRPS pretty much give the same reaction – “That’s rough, sorry,” or a version of it.

Having a debilitating, chronic disease is also isolating to a degree. After people you work with professionally, colleagues, even friends, stop feeling sorry for you and realize that it won’t get better, they begin to move on without you.

The more acute my symptoms, the more I become to be viewed as who I used to be, and that’s hard to reconcile as well. This is a shared feeling that is also important to this story.

Why the “Suicide Disease?” CRPS, usually starts in a limb, which manifests as extreme pain, swelling, limited range of motion, and changes the skin and bones. The McGill pain index, a scale for rating pain, ranks CRPS higher than childbirth, amputation, and cancer. It may initially affect one limb and then spread throughout the body. Over a third of affected people report symptoms throughout their whole bodies. I am one of those.

Presently, about 200,000, or about one in 1,700 people in the U.S. are definitively diagnosed with CRPS.

Idiopathic chronic pain (pain with no definitive cause lasting for more than six months) is a primary diagnosis for more people than diabetes, heart disease, and kidney disease combined.

CRPS, it seems, is a diagnosis that may be exploding in proportion to newly found awareness among physicians and it appears that CRPS (along with its sometime companion condition called MCAS, or Mast Cell Activation Syndrome, a hyperallergic condition) are well on their way to be the diagnoses DuJour. There is, however, growing medical support stating that CRPS is significantly underdiagnosed that may further fuel this trend.

One of the primary goals of organizations supporting CRPS sufferers like RSDSA has been to increase awareness of the disease. A wave of new diagnoses bordering on an epidemic may well change the need from increasing awareness to managing it.

There is good reason. An explosive new diagnosis also creates a change in optics that can change physician reactions from “That’s rough,” to “Oh, really?”

This is not an opinion; it has some meat on the bone. The governmental and institutional overreaction to opioids, for example, has resulted in at least 40 suicides to date for CRPS patients who were taken off opiate pain meds to comply with new regulations. Take unrelenting pain, fatigue, weakness and limited mobility added to isolation and depression and that combination alone explains why CRPS is called the Suicide Disease. It is a condition that won’t kill you, and, that’s the bad news.

There is danger in the present political climate.

There is no denying that there is an opioid crisis. When government and the media decide that something that is abused by a few bad doctors accommodating “weak” people promoted by one or two greedy pharma companies is bad for everyone, good doctors get caught in the overreactive, rigid regulation and innocent people suffer and die. The CRPS community is particularly vulnerable to this mindless group-think.

While some physicians have stepped forward to be the adults in the room, pointing out that these drugs help millions and not every prescription is bad, the new rage of “guilty until proven innocent” and identity politics is a potential death sentence to those unfortunate enough to be identified as potential drug abusers who need to be saved from themselves.

Ignorance is a dangerous thing when combined with activism, power and potential political gain.

So, with all this being said, there may be hope for CRPS sufferers, both as temporary exceptions to restrictive pain medication laws and as beneficiaries of new treatments that come with a rapidly broadening market for them.

The path to sanity begins with the diagnosis of CRPS moving from an inferred diagnosis to an empirical one, a course of action requiring credible medical consensus that at least two positive empirical clinical tests must be present to confirm a diagnosis of CRPS. For example, a temperature differential of 1-degree F from one limb to another, a positive reaction to a sympathetic nerve block, and, or, peripheral demyelinating neuropathy supported by one or two of the myriad of companion symptoms. It’s a complex disease, but complexity creates a lot of choices.

The symptoms of CRPS are well documented and horrifyingly real.

Evidence-based medical protocols confirming the condition are not. And, the time is already overdue to get them in place.

Since the condition is historically rare, so are experts in it. They should be in the vanguard of establishing diagnostic protocols and teaching how to treat it on an international stage.

Please consider making a donation to RSDSA today!

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James Doulgeris co-founded Osler Health in 2013 and has served as its Chief Executive since inception. He has over thirty-five years of executive healthcare management experience serving primarily as president, CEO, and director of public and private companies and healthcare providers in the hospital, ancillary provider, medical device and healthcare services sectors. He is also a highly acclaimed speaker and thought leader on healthcare subjects from population health to using healthcare analytics. In addition to being a best-selling novelist, he is widely published and interviewed for health care issues on many prominent platforms and publications.

Osler Health is a specially integrated clinical network of elite primary care physicians who work collaboratively to deliver the highest quality care at optimal cost. We are on the vanguard of medical providers making the transition from being service providers to clinical managers realized by our use of data and advanced analytics to equip, enable, and empower our participating physicians to prevent acute episodes while being highly equipped to manage them if they do happen.

Osler’s work allows us to be responsible for the totality of each patient’s care within our network to efficiently deliver the best results individually and as a population. This has made Osler one of the most successful accountable care organizations in the country with a reputation for being years ahead of the industry.