Category: RSDS General Info

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.

Written by Maria Martinez for the RSDSA blog.

I am 50 years old and have been married 30 years.  I have a beautiful 27-year-old daughter and a 25-year-old son. They both decided to get married within 6 weeks of each other last year. One gave us a months’ notice and the other 2 days.

As a wife and mother, I could not be happier about their choice of spouses.

I adore my husband and had so many plans for this time in my life.

All those plans were waylaid in 2008 after a cervical mitre.  The neurosurgeon explained that my neck is literally not put together correctly and that these issues were inevitable. The major nerve bundle going to my left arm was crushed.  He would go in and do a “roto rooter” job and create a space for this nerve bundle.

The surgery was a complete success. I regained full function of my left arm which often would just dangle to my side before surgery.

There was a deep ache and pang that just wouldn’t go away in that left arm and into my hand.  He sent me to a pain management (pm) doctor who poo pooed all my concerns by telling me that I was getting close to 40 and that there was arthritis in my hands.

As I had never ever dealt with a chronic issue, I did not know what to say or ask.  I didn’t have any response to her telling me that I couldn’t be in that much pain except to reiterate that I have a super high pain tolerance. I had passed a 5mm kidney stone without feeling it until it was in the bladder. The urologist told me to keep an eye on my body because my body didn’t respond to pain in a normal way.

I worked for two years after surgery with this pain. I was sent for imaging, to physical therapy, and a myriad of interventions that didn’t affect change.

In February of 2010, I was at work when a wave of hot lava like pain swept up from the incision site into my brain. I was instantaneously hysterical in pain. The office staff was going to call an ambulance, but my husband was by happenstance in the area and my pm doctor saw me immediately.

Now she agreed something was horribly wrong and called the neurosurgeon who had done my surgery two years before. His office set an appointment for that same week. By the time I saw him just a few days later my right arm was on fire in worse pain than my left.

I am an inordinately positive person, but I saw by the look in his eyes something was very wrong.

He sent me to a neurologist for tests and for an updated MRI.

He then sent me to a colleague of his that had worked for one of the foremost military hospitals in the United States located in San Antonio. His expertise with wounded warriors who return with or develop CRPS is top notch.  This gentleman had worked as the chief of neurosurgery at this facility.

He leaned his head against the wall and told me two things that would propel me to where I am today. They were “you have to find new normal” and “do your research because you will run into doctors that have no idea about this disease.”

Without all the details and within nine months of seeing him, CRPS had affected both of my legs worse than my arms.  I could barely walk within a year of my diagnosis.

The Light Side of Pain

All the interventions to get me where I am today will be shared as I share The Light Side of Pain.

There is hope, there is life and I hope you will be open to some of my discoveries over these last 10 years.

When writing my thoughts, I define Spirit as the core of a person/the essence of who I am and my core beliefs. Physical light is defined as an electric field tied up with a magnetic field flying through space.

The very nature of Light is to dispel darkness.

It is not hard to listen to Spirit when life is great. As a matter of fact, we often just live our truths without giving it much thought.

Tenacious, outgoing, benevolent, caring, sharing, proactive in education, fitness and personal goals.

I know how strong my spirit is. It took me through a very abusive childhood. There was a spark that always compelled me to believe that something great would happen.

I was able to depend on tenacity to move 2,000 miles from home when I was 20 years old from the Houston area to Denver. I got a job as a nanny from an ad in a newspaper. I moved in with a family I did not know to raise two young children and a brand-new puppy.

There was a fearlessness believing this was a new beginning.

That same Spirit led me to believe I could be a great wife and mother. I was a wife at 21 and a mother to both of my kids at 25.

What abuse couldn’t take from me CRPS began to. It started wearing away at my core.

On April 1^st, 2010 when I received my diagnosis, I came home and put the lyrics from “Across the Universe” by The Beatles as a banner on my computer. The mantra, “Nothing’s gonna change my world,” filled my head day and night.

I wasn’t even prepared for how CRPS was going to change my life. My Spirit was already clamoring for a voice in the experience.

Between 2012 and 2015, I was bedridden and I was incapable of navigating my everyday life. I couldn’t cook, clean, and some days bathe my own body.

My daughter gave up a scholarship at an out-of-state college to live with us for eight years. Karina has crawled into the shower with me and she’s shaved my legs. That made me question all my whys.

My longest stretch of being bedridden was three solid months at the end of 2015. I don’t know how but my Spirit kept a spark and a hope.

I want to share how to fuel a spark to your Spirit. I know we all have one as we are here today despite what it has or will cost us physically.

1. Explore your physical core and and ask Who am I?
2. What do I love?
3. What have I overcome?
4. How do I make this work for me?
5. Muse, meditate, listen to great music, light candles, pray, read inspirational books, watch documentaries. Find ways to define your Spirit.
6. Feed your Spirit and It will guide you.
7. Reignite the Light and this leads us to the Mind part of this process….
   1. Mind-the ability for rational thought
   2. Light-as to enlightennot darkto become aware

I must say that just a few months into my diagnosis rational thought was waning.  Nobody tells us how to live with a disease.

The CRPS Hole

Dr. Wayne Dyer is a favorite speaker.  He shares a story in his presentations about a person walking down the street and they fall into a hole. They continue the same road every day and fall into the same hole until someone rescues them and they learn a new path which doesn’t have that hole.

The CRPS story goes like this. I fall into the same hole because I do not have a map.

I had suffered with CRPS for two years before I was diagnosed. I was completely lost looking up CRPS in the search engine. It was overwhelming; the pain, body changes, career-ending symptoms and nobody to tell me how to live this. By 2012, I was bedridden more than I was not. I would go out one day and be in bed for two weeks.

My longest stretch of living like this was the end of 2015. I was bedridden for three months.

My mind had this dialogue that I was dying. Thank goodness for an excellent primary care physician.  At this time, I was seeing him every three months and in between if needed. His protocol was to do bloodwork a week before seeing me.

Except for my blood pressure being high due to pain, I was healthy. This dialogue in my brain was pain, fear and depression coming together to produce catastrophic thinking.

He periodically has me fill out mental wellness checks. In 2014, he didn’t like what he saw and what my family was telling him.  He gave me a consult to see a therapist.  I chose a Cognitive Behavioral Therapist who in just a few sessions set my thinking into a different mode.

My new thinking was, and to this day is, My Life Needs a Captain!

Internal Power

Before CRPS I was a whole human with all parts of my psyche integrated.

I now am two parts.

I, my rational self, strong minded self, am in control of a very cranky, bratty body that daily has no desire to do anything.

I take a very conscious evaluation every day of what the true situation is pain wise, weather, what my activity level was previously, how close I am to treatments, what I have used in my CRPS toolbox, what I haven’t tried yet and I make those decisions for that day.  Every day is completely different.

I’m sure you have heard the true story of ship and the lighthouse.

The ship saw a blip on their radar and radioed, “Move, I am a military warship.”

The reply was, “You move, I cannot!”

After the blustering captain of the ship continued his stance, the other finally gives him all the information.

“I am a Lighthouse! You must adjust your course!”

Light-as to enlighten, not dark, to become aware.

Each of us will have a different map for this disease. What works for one will not work for another. What I can do is take points of Light from many sources and map my course.

I take that to my executive self, plot a course and I become the navigator for CRPS, not CRPS for my life.

I am the LIGHTHOUSE!

I just refuse to stop enjoying my life

Remember, the body is the vehicle I live in and a Light is a burden that is not heavy, easier to carry than a heavy load.

I saved the body for last because it is still the last to get the memo that I AM GOING TO LIVE DESPITE CRPS.

The neurosurgeon who diagnosed me told me to research this disease as I would sit in front of doctors who knew nothing about this disease. I haven’t been to an ER with CRPS symptoms since the Fall of 2014. Every time I went to the ER my daughter and husband would comment on how computer monitors were lit up with CRPS information because the doctor and nurses were getting a quick overview of a disease they had never heard of.

In doing research I am not unaware of the ravages of this disease. I think it is a horrible disease with complications that are life altering. Knowing this, I just refuse to stop enjoying my life.

I’ve experienced every stage of grief about what my life before CRPS was and what my life after CRPS is now.

I’ve experienced every symptom as CRPS moved from the nerves in my neck into my left arm, mirrored into my right arm, into my legs, my intestines, stomach, bladder and esophagus. CRPS has also affected every bone and piece of cartilage in my skeleton.

So, how in the world do we come to terms with this?

First it is extremely important to build a strong medical team. My PCP, Dr. David Guerrero is responsible for my health. As of my last visit all my numbers are in the healthy range except my cholesterol. We have a plan in place for my next visit in August. My health has improved so much that as of this year, I now see him twice a year instead of three or four times.

I turned 50 in December. He is taking my age and CRPS into account when he looks at my file. He also has a pulse on what my other doctors are saying.

My gastroenterologist has taken care of my gastric issues since 2013.  When I first started seeing him I took in an article about the systemic complications of CRPS and asked him to make it a part of my permanent record. I had highlighted the portion that dealt with my gastric issues. Dr. Alfredo Espinoza had been invaluable in keeping my digestive working so that these issues have not gotten worse.

My final doctor is my pain management doctor. Dr. Ricardo Alvarado has been so amazing at thinking outside the box for his patients.  I have at least 15 friends that I know personally who see Dr. A as he is known to us. He has been invaluable at getting all of us into a healthier way of thinking about CRPS and the options we have for pain management. He and his office fought to get Ketamine infusions paid for when I had been denied for four years. His comment of, “Let us fight for you,” has never left me.

An excellent TEAM for this bad, cranky body is a must.

Despite how CRPS has ravaged this body, I am healthy, I have changed my diet to alleviate pain, I am now able to exercise, and I clean my own house.

I have friends who see neurologists, psychologists, chiropractors, pulmonologists, immunologists and every other specialty there is to manage their CRPS.

If you’re in the same boat, here are a few practical things for you:

1. Keep an ongoing dialogue about the changes CRPS brings and address them accordingly. Ask if you do not know who to see for these.
2. Have a handy toolbox and don’t forget the importance of laughter
3. Have an excellent support system
4. Be kind to yourself
5. Self-care is not selfish
6. Manage emotional energy
7. Decide how you want to use your physical energy
8. Eat healthy
9. Exercise moderately as led by your physicians
10. Find your passions and find ways to live those

Kirsten is a woman in our group who is also a Marine. We’ve all heard of “Semper Fidelis” which mean Always Faithful. Semper Gumby is a term used by the Marines as a tongue in cheek reference because their plans and orders can and do change at any given moment and indicates, “Always Flexible.”

Semper Gumby is a point of Light on our map.

I have CRPS friends who have gone back into their careers after long absences of working, I have friends who have continued to work, I have seen women start a family, I have friends who skydive, write books, a friend just returned from Hungary and Romania after over a week of missions work.

I want to go back to a key point in the first definition of Light.

A strong, supportive, proactive group of peers is needed to do this successfully

I started a public Facebook Page because I could not find anything with San Antonio and CRPS in the same sentence when I started my journey. I started a page just for information.

A group is offered when a public page is made. I made it, but I wasn’t interested in a group.  In 2010, without me adding anyone or making any posts, people started asking questions and somehow, they thought I had an insight. I did more research to try to help in any way I could.

This has led to the best friendships, partnerships, buddies, problem solvers, I’ve ever known.

Alexia Swanepoel and I administrate this beautiful group of people in our Facebook Group.

Together a collective intelligence of educated, proactive, positive people are LIVING with CRPS. I know there is a way of living with this disease because I see it every single day in the posts that are shared.

There is so much laughter, love and life to live.

There is a place of Light living with CRPS!

Written by Lauren Bentley for the RSDSA blog.

As the editor of the RSDSA Newsletter, there are many aspects of the job that I love such as reading about the latest research studies, promoting community awareness events, learning about alternative methods for coping with pain; but perhaps my favorite part is making connections with other members of the RSDSA community and listening to their stories.

I recently had the privilege to interview Eric Moyal, an energetic, enthusiastic young adult who recently earned his masters’ degree and works in fundraising for Brandeis University. He is also the brother of a CRPS Warrior.

Throughout our conversation, there seemed to be one theme that prevailed above everything else: Eric really loves his sister – so much so that he is biking 1,700 miles to raise awareness and research funding for CRPS. No, 1,700 miles is not a typo. Eric will bike from Medford, Massachusetts, where he currently resides, to his hometown of Bay Harbor Islands, Florida. Along the way, he plans to stop in various cities and meet with those who have CRPS, along with their families.  This biking fundraiser is fondly named the “Ride for Warriors.”

Eric first became aware of “the most painful disease known to man” when his younger sister, Anais, was diagnosed with CRPS approximately five years ago. Anais was riding her bike one a November day when she was suddenly hit by a car. She was fifteen years old at the time of her accident. Although the initial trauma of Anais’ accident began to heal, she still felt incredible pain – and that something was still incredibly wrong. It took doctors two years to finally diagnosis Anais with CRPS and, by that time, the disease had already taken a tremendous toll on her body.

When asked what inspired him to create the Ride For Warriors, Eric said, “I really love my sister, we’re like best friends. We talked a lot over the past few years about what she is going through and how hard it is. Part of the struggle isn’t just about getting a diagnosis, it’s convincing yourself that your pain is real when everyone else is telling you nothing is wrong.” He added, “it’s crazy to go through something like this and have nobody believe you. I want to make sure people are aware that CRPS exists.”

As someone who has watched her mother battle CRPS for over a decade, I understand feeling pure helplessness and frustration when there is nothing you can do to take away their pain. During our conversation, we bonded over shared stories of misdiagnosis, doctors’ disbelief of our loved ones’ pain, and the protectiveness felt every time we heard somebody say “but you don’t look sick.” It can be hard to figure out how you can help your loved one when the disease is still relatively unknown to the medical community.

Nevertheless, Eric has a simple, yet tremendously impactful way to support our Warriors – be a source of understanding.  We will never be able to comprehend the level of their pain, but we can offer our understanding when they endure frustrating conversations with doctors,  experience the judgment of others, or just need to go to bed. Anais, now 20 years old, is quite busy being a college student. Although she spends a lot of her free time raising awareness and supporting other college-aged students with CRPS through an organization called Ferocious Fighters, Anais still often experiences a lack of understanding from her peers. Understanding, Eric believes, is something every CRPS Warrior deserves.

The Ride for Warriors is set to kick off on Saturday, June 29th and conclude on July 14th and there are several ways to offer support:

• Follow and share the campaign on Facebook, Instagram, and FirstGiving
• As mentioned, Eric will be stopping in various cities along the way and would love to speak with fellow members of the CRPS community. Reach out and arrange a time to meet Eric along his ride.
• If you have the means, consider offering your home as a place for him to stay. His bike route is included below, for reference.
• There are also financial ways to support this cause – all of which go to furthering research. Pledge 10 cents for every mile that is peddled or ask your local spin studio, business or governmental organizations to serve as sponsors. Any donation, no matter the size, can be made by visiting the Ride for Warriors Giving Page, which can be found here.

Aside from supporting this bike ride specifically, Eric also encourages everyone to share the information they have about CRPS with others, whether that is swapping treatment stories with another Warrior or educating a family member about the disease.

RSDSA is excited to wish Eric, and everyone else working with the Ride for Warriors, the best of luck. But, before Eric hits the road, he has one message for each and every CRPS Warrior: “There IS support and there ARE people out there fighting for you. Keep on being Warriors!”

Ride for Warriors Bike Route

Medford, MA to Hartford, CT…………………….………………………………….. 126 Miles

Hartford, CT to New York, NY …………….…………………………………………127 Miles

New York, NY to Wilmington, MD…. ………………………………………………129 Miles

Wilmington, MD to Washington,DC …….………………………………………….. 118 Miles

Washington, DC to Goochland, VA………………………………………………….. 131 Miles

Goochland, VA to Oxford, NC ………………………………………………………. 120 Miles

Oxford, NC to Carthage NC ………………………………………………………….. 99 Miles

Carthage, NC to Turbeville SC……………………………………………………….. 135 Miles

Turbeville, SC to Ridgeville, SC……………………………………………………… 68 Miles

Ridgeville, SC to Garden City, GA ………………………………………………….. 102 Miles

Garden City, GA to Kingsland, GA …………………………………………………. 122 Miles

Kingsland, GA to Jacksonville Beach, FL ………..…………………………………. 53 Miles

Jacksonville Beach, FL to Daytona Beach, FL………………………………………. 83 Miles

Daytona Beach, FL to Vero Beach, FL……………………………………………… 128 Miles

Vero Beach, FL to West Palm Beach, FL…………………………………………… 71 Miles

West Palm Beach, FL to Bay Harbor Islands, FL…………………………………….. 65 Miles

Please consider making a donation to RSDSA today!

Written by James W. Broatch, MSW, RSDSA Executive Vice President, Director

Three years after the Centers for Disease Control and Prevention (CDC) released its Guidelines for Prescribing Opioids for Chronic Pain, which was intended for primary care providers (PCPs), three of the authors recently wrote an article in the April 24th issue of the New England Journal of Medicine acknowledging untoward consequences related to the misapplication of the Guidelines.

For the past three years, RSDSA’s staff, Board of Directors and I have struggled to help individuals with Complex Regional Pain Syndrome (CRPS) and other chronic pain syndromes deal with the misapplication of the Guidelines.

Individuals on long-standing high-dose opioid therapy, who reported being abandoned by their PCPs or pain specialists, were forced abruptly to taper to a much less efficacious dosage (90 Morphine milligram equivalents or below) or were forcefully tapered from stable medical regimes without regard to withdrawal symptoms.

According to Thomas Kline, MD, PhD, at least 40 individuals have died by suicide due to physician abandonment, being forcefully tapered without patient consent, and then being unable to find an alternative efficacious intervention or medication to treat their unrelenting pain.

Furthermore, insurance companies, state legislatures, pharmacy boards, and chain stores have also created obstacles for access for opioid therapy for people with chronic pain.

If you are having difficulty with your physician regarding your ongoing opioid therapy, RSDSA can provide you with the NEJM article by calling 877-662-7737 or by emailing [email protected]

If you are on Twitter, consider following @RSDSA, @bethdarnall, @ThomasKlineMD, @CIAAG_Lauren, and @LynnRWebsterMD.

Please consider making a donation to RSDSA today!

Written by Wendy Kahn, MD for the RSDSA blog.

I’ve always been very active, at least until one day in the fall of 2000, when I got a stick stuck in my rollerblade when I stood up to start my ride. I decided to have a controlled fall, but the impact on my sacrum turned out to be anything but controlled. During the next three years, I developed multiple cases of pneumonia, until the fifth pulmonologist figured out that I had twisted my spine, kinking one lung. In 2003, a nerve in my left calf became painful, limiting my walking.  My twisting deformity increased steadily until 2005 when suddenly I had such excruciating pain in my legs – first left, then right- that I couldn’t move. You know what that’s like. For once, I don’t have to try to explain.

I saw a neurologist within the week and had the awful studies. I was given too many narcotics too fast, which didn’t control the pain anyway. It took three years, much too long, before a chiropractor finally diagnosed me. I was bedridden, in constant profound pain, often so bad that I couldn’t speak or even maintain consciousness. That’s my 10/10 on the pain scale. Half of my friends and family immediately dropped off the radar, followed by most of the rest in the subsequent years. My daughter couldn’t handle it and left. No one likes pain. Those few that have stayed with me I cherish. My husband, poor guy, was my only support for most of the duration, which is hardly ideal. I hope that your family and friends are more supportive. They can fill your needs and hopefully distract you.

I fought hard all those years to get better, no thanks to the over 100 doctors I saw. None of them helped me, other than to prescribe medications. They all said I would never recover. The first neurologist, years later, had the audacity to tell me, “You should have come in sooner- your RSD could have been successfully treated.” Not one of them could handle my pain as they seemed allergic to it. Some literally drew away from me, while others seemed not to register it at all. No one offered any way out. I tried every available therapy, though I had to find them all myself, sometimes with the help of the RSDSA.

I had to take the helm myself, not easy to do while in such profound pain. If I had not been a doctor and known a little about navigating the system, I am sure I would have killed myself. Ultimately, using a combination of Chiropractic, Low Light Laser Therapy, Gua Sha (Chinese scraping technique), Craniosacral Therapy, massage and acupuncture, I regained my normal anatomic alignment. The impingement on my affected “last” nerve released. Suddenly, my body felt familiar. Since then, I have improved dramatically, regaining bits of my previous life each day. One day I could sit up in bed, then I could walk a little, listen to music, wear socks, crawl into the garden, etc. I recognize my handwriting again.

I’m writing this in the hopes that the messages from my story might help you in your journey. Here is what I have learned:

1. Try to find a way to repair the primary injury site. No doctor I saw thought of this, and I still don’t understand why. It follows a basic tenet of medicine that they seem to have forgotten. Once my anatomic alignment was restored, the nerve impingement let go. That was crucial. All the efforts I made to recover prior to that didn’t advance very far, though they were essential for my survival in other ways.
4. Get the most you can out of every minute, even when you are in severe pain. It will sustain you. Even in my darkest hours for those 13 years, I was grateful for audio books, internet streaming, my own thoughts, and my loyal husband. Distraction can take you out of the pain, even if it’s only for a second or two.
7. Get in touch with your body and believe what it tells you. I used to say, “I rent this space” about my body. I’m much more invested in it now. We work together. It took me a long time to learn how to listen to it, but don’t give up. Move as much as it will let you, maybe even a little more than that.
10. Don’t lose hope. Never lose hope. Alternative medicine can offer a lot, although you have to be careful to pick and choose what works for you. There should be someone to guide you, but I never found anyone myself. Hopefully, you will have more luck. At least contact RSDSA to start. A big issue for me was scar tissue, especially after I developed severe atrophy in my calves. For that, Low Light Laser Therapy and Gua Sha were the most crucial. For my muscle spasms, massage was critical. I couldn’t move without it.

It’s only been a month, so I’m not there yet, but I’m on the way to becoming myself again. It feels amazing, though I’m still holding my breath. Yesterday I spent five hours in the garden, albeit on my hands and knees. My garden is going to be gorgeous this year.

Please consider making a donation to RSDSA today!