Category: RSDS General Info

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!

Written by Angie Jones for the RSDSA blog.

Four years ago, I was happy, healthy and pain-free. I owned my own business, volunteered in dog rescue, traveled with my family, and enjoyed my life. I had driven three hours to Kansas City and was standing in line when my blood pressure tanked causing me to collapse, spiral downward and was left with an ankle that required reconstruction.

Within days my casted foot had swollen, turned dark purple and felt as if it was on fire. The pain was incredible. Nothing helped. Ice, pain meds, elevation… there was no relief.

Although I shared my concerns with my doctors, they failed to recognize the symptoms of Complex Regional Pain Syndrome (CRPS).

When treated early, many patients go into remission. Sadly, like others, my six-month window had come and gone long before I was diagnosed. I told my cardiologist if he couldn’t tell me what was wrong, I was ready for amputation.

I don’t know what is worse – not knowing what is wrong or being told that you have the most painful disease known to medicine and for which there is no cure.

Eventually, I tried nerve blocks, Lyrica, Gabapentin, Chinese medicine, Calmare, Ketamine infusions, and years of physical therapy. Many of these treatments are not covered by insurance and the benefits, if any, were only temporary.

I had heard about Dr. Katinka van der Merwe and the Neurologic Relief Center in Fayetteville, AR. I decided to reach out for information as I was fearful that my CRPS had spread throughout my body.

I was advised that they do not take insurance and even the best insurance policies refuse to pay for many of the treatments. I knew this was often the case with rare diseases as little is spent on research that will benefit so few. Yes, it terrified me to know I had to withdraw from my IRA when I was on disability. However, what is my future going to be like with a suicide disease?

Anna returned my call and did an excellent job answering my questions. She left me with a sense of hope that I hadn’t felt in a long time.

The first day of treatment, I was overwhelmed by the number of patients in wheelchairs or crutches. I met people from France, Germany, Australia, Sweden, Belgium, etc. The halls were difficult to traverse due to the sheer number of patients and family members.

The staff and fellow patients were incredibly supportive. The patients would spend several hours together each day and then socialize after hours and/or on weekends.

After my first two weeks, I feared I would fail to see improvement and be sent home. As my pain lessened, my worries changed to what happens if I invest all this money and I can’t hold it on my own when I get home. Upon speaking to others, I found these fears to be common.

My physical therapist had warned treatment would be like a roller coaster and she was right. My pain dropped to a point where I was able to quit taking pain medicine but as the weather changed it would spike but never to the point of needing to return to medications.

Eventually, my pain was averaging a mere 1 to 1.5 every day with my foot down and zero elevation, but it took a fellow patient to teach me the importance of trusting the process.

I’d spoken to this woman who’d come in taking each painful step with the aid of a walker on her first day. Within a couple of weeks, she was wearing a Fitbit, counting her steps and walking swiftly without pain. I told her she was looking great and she told me her neurologist didn’t need to see her anymore because she is doing so well. More importantly, she told me that she was no longer planning her farewell party.

Dr. K and her staff are amazing. I witnessed miracles as many patients left in remission and others like me were very, very close.

Am I done? Not yet, but I feel as if I have a future again. I literally experienced the most progress the last two days of my treatment. If I would have had another week or two, I believe that I would be in complete remission. I know that I can and will win this battle with CRPS and so can you.

This blog is not intended to provide advice on personal medical matters or to substitute for consultation with a physician.

Written by Tatum Bunnett for the RSDSA blog.

“Baby steps” has been my motto for half of my life. At the age of nine, I started experiencing intense pain in my feet and lower legs. My doctor discovered that I had a congenital birth disorder in which several of my bones in my feet and ankles were fused together. First, a series of casts were used to non-surgically correct the problem; I spent 12 weeks of my fifth-grade year in a wheelchair with casts on both legs. Unfortunately, as a result of this treatment, I developed Complex Regional Pain Syndrome (CRPS).

It was then determined that I needed a series of surgeries to correct the original foot deformity, but my CRPS had to be controlled before the surgeries could take place. The treatment required my mom and me to move to Palo Alto, California. After being on the waiting list for nine weeks, the Lucile Packard Children’s Hospital pain program finally had a spot for me. This intensive and draining eight-week program required eight hours of therapy each day. The pain was excruciating at times, but I realized the only way to make progress in this daunting process was to set small actionable goals each week, – making baby steps towards my recovery.

Once through the program, it was time to tackle the surgeries. Over the next two years, I had 16 hospital procedures and four major surgeries. Through this (what seemed like a never-ending) cycle of surgery, recovery, surgery, etc., I found there was no other option but to keep taking small steps forward – mentally and physically. To most, being able to walk without assistance isn’t a big step, but for me, this felt like a giant leap. It not only meant that I was on the road to recovery, but I was almost ready to have another surgery and one step closer to being able to go back to my family and life. If I didn’t have a positive attitude and continue my therapies, I would not be able to have the next surgery and would have my pain forever. The memory of the pain is fading; however, what I learned through the process will forever shape my thinking.

After these extremely difficult three and a half years I continued to recover and was able to return to my normal life, I graduated high school and started planning for another life-changing journey, a bike ride across the United States of America with my family. I decided to take a gap year before starting college. I wanted to prove to myself and other people living with CRPS that we could fight through the pain. I also wanted to educate others, fundraise, and bring awareness to CRPS.

Riding across the USA was a massive endeavor, the plan was to ride from San Diego, California to St. Augustine, Florida. We would ride anywhere from 30 to 90 miles a day with varying terrain. Some days we would have thousands of feet of elevation gain and other days the ride would be flat. Before we started the ride I had only been a recreation cyclist, the first road bike I bought was for this trip. I was far from an advanced road biker. The longest ride I had ever done was 30 miles with very little traffic. To say I was genuinely nervous is an understatement! I didn’t know if I could ride the 3,000 miles to St. Augustine, I also was unsure that my feet would be able to take the intense, strenuous activity every day. To pass the time, my dad and I would play goofy games along the way and enjoyed the always changing scenery; from the plants and animals to the smells and the temperatures. I stayed positive and told myself that I just needed to keep making baby steps.

Like I had predicted, parts of the ride were extremely difficult. My hardest day of riding was climbing up 8,828 feet to the top of Emory Pass in New Mexico. After being delayed two days because of the first frost and snow, I was excited to be back on my bike. The climb took most of the day and the whole time I wasn’t sure I could make to the top, especially since I had never done a climb like this before. I knew that the best way to get to the top was to go in my lowest gear and take as long as I needed. Throughout the climb I never felt weak, I felt my self gaining more and more strength.  After several hours of pedaling, we made it to the top and was elated! I felt happy, I was so proud that I had conquered Emory Pass and didn’t give up! I was even happier with the reward of a 20 mile downhill. Riding through these difficult days made me realize that CRPS made me stronger, not weaker! I am now able to see how far I have come, from the days of not being able to walk to proving to myself that CRPS no longer holds me back or owns my life.

Our average daily ride was about 60 miles a day, which allowed us to stop in many rural towns. We met many amazing giving, kind, and genuine people. All of the people we met wanted to hear about my journey and CRPS. People made us dinner, took us to dance halls, and made donations to RSDSA. On several occasions, I was able to share the difficulties of CRPS and talk with them about my journey, after these conversations many people chose to donate and even followed my blog, tatumbunnett.com.

Throughout the ride, I became stronger, more powerful, and my worries about my feet and CRPS slowly started to drift away. I felt energized by the ride and craved exercise. I knew I could make it to Saint Augustine! Unfortunately, on day 44 of the ride in Kinder, Louisiana, my dad had a really bad crash. He was careflighted to a hospital and had to have surgery for several facial lacerations, He is recovering well. At this point, we weren’t able to continue the ride and we decided to come back to finish it at a later time as we only had two weeks left. Although we didn’t make it to Saint Augustine, we rode 2,163 miles through five states. At the start of the ride, I wasn’t sure I could make it across California, but we made it to Louisiana.

I overcame so many personal and physical challenges! I learned never to give up just because something is hard, but to keep fighting and you’ll come out on top. I also learned that CRPS didn’t make me weaker it made me stronger! It taught me how to overcome any challenge by taking baby steps and staying positive. No matter what the challenge, I am confident there will be more, learning to take that first “baby step” is essential.

Please consider making a donation to RSDSA today!

Jeri Krassner is a former NYC gal working for New York City Hemophilia Chapter and is now the Special Events Coordinator for RSDSA! I work for Jim and you. As a fundraiser, that means I ask people for funds, which is hard, but there are two things to remember that make it easy.

1. You are not asking for yourself. You are not asking your family, friends, neighbors and community to help pay your VISA bill or make a car payment.
2. You are asking people to give because you are passionate about the cause, it’s important to you and giving = doing good.

I say when someone gives me any amount from $2,500 to $10 Thank You – you just made the world a better place. You can’t top that, and making the world a better place feels good.

My goal is to help all the RSDSA folks running special events. To help raise awareness, raise more money, build community and confound expectations. Best of all each event will contribute to the RSDSA mission. We all want better treatments and funding research for a cure.

I will leave you with two thoughts – both simple. Would you believe the top reason for not donating is the person was not asked? That’s right no one asked that family member, friend, next door neighbor to donate, so they didn’t.

Second thought – people like giving to people they know. When a family person, friend, neighbor gives to you it’s personal and the impact is meaningful. Hold onto that when you get shy to ask.

Last when out there registering for a walk, race, swim, bike ride, make a team. Be personal and ask your friends, families and neighbors.

• Ask and ask again. People are busy, they got three emails from Best Buy, so they did not see yours. So, ask and then ask again. It takes 3-6 asks to get your yes. And don’t worry they won’t be mad, and you are not putting them on the spot. You are asking them to make the world a better place and who can say no to that?

Contact Jeri at [email protected]

Please consider making a donation to RSDSA today.

Written by Elisa Friedlander for the RSDSA blog.

Hello dear readers! This post below is from an article I wrote a few months ago. It was published in the Inner Peace Column of our local newspaper, the Ashland Tidings. Enjoy, and please pass on! Click here for the link to her article.

Recently, during a dinner outing with my wife and another couple, I mentioned my plan to try driving again (it’s been several years since disabling neck pain and other medical problems made driving a thing of the past). One friend responded, “Great! You can finally be independent!” There was no ill-intention in her comment. Still, it felt like an eyelash jabbing my cornea. At the time, I just nodded. My “response” came later that evening when I was alone in my head:

So, let me get this straight: Out of the four adults sitting in this restaurant booth, only three are independent? The three who drive?

I don’t think so.

“I did it myself!” It’s ingrained in us. Just look at a baby waddling toward her parent on her own for the first time. She responds to excitable feedback, and the prideful scene is juicier than those yummy fat rolls on her delicious baby legs. As adults, we still feel joy from solo accomplishments (even more so when we’ve fallen on our tush a few times en route).

But what happens when we can no longer do things on our own and our Western value of independence is threatened? How do we contend with the psychological problems that arise from valuing ourselves (and others) based on our learned ideal of self-reliance?

In adulthood, our struggle with autonomy often begins with aging. Hearing, vision, or mobility changes can disrupt daily activities; sometimes to the extent that we question our own identity.

For me, grappling with independence began earlier, smack in the middle of my forties. Pain from failed spine surgeries and the subsequent onset of CRPS became disabling and, sadly, I needed to put my busy psychotherapy practice on hold. I spent days and nights struggling in pain, trying to figure out how to do simple tasks. Helping adults and children had been the focus of my entire career; now I couldn’t even help myself. If I couldn’t cut my own food at dinner; if I no longer had my work and I wasn’t able to drive, what did that mean for me?

It meant I was no longer the independent person I had been all my life. At least that’s what I thought in the beginning when grief adhered to me like sap on a pine tree. This grief was dripping with that pin-sharp word my friend mentioned. Independence and I have been intertwined for as long as I can remember. I dug up this poem I wrote when I was eight years old:

Once there was an elf
She climbed upon a shelf
She did it by herself!
She helped another elf!

This early exercise in self-expression communicates that Little Elf’s mind wasn’t really on the goods awaiting her atop that mountainous piece of furniture. No, she was all about determined self-reliance. It made her feel like she could do anything those characters in storybooks could do; even make her way up a lofty shelf full of books! This desire never changed; neither did her value of helping others. Some elves just know they’re meant to become therapists and help people get perspective on their inner-s (elves).

Disability prompted my own quest to re-evaluate life, from both an internal and societal stance. I developed a closer relationship to interdependence, but also stayed true to independence. I was able to embrace both by redefining what the latter truly means–and what it doesn’t. I realized independence isn’t driving to an appointment. That’s convenience. It’s not lifting a bag or walking. That’smobility. It isn’t hearing, or talking. Those are communication modalities.

Independence is about personal agency. When we make choices and take action from a place of confidence and intention, we’re in control of our lives. Independent minds assume responsibility and exercise resilience amidst difficult circumstances.

So, as it turns out, I never actually lost my independence. What I lost was a life of relative ease…something we can all relate to (orwill relate to in the future, merely as a result of the aging process). Grief from this will creep up and jab us all in the eye sometimes, so we must acknowledge it and respond with self-compassion. Only then, can we befriend that elf within us who finds creative ways to keep climbing–always lending a helping hand along the way.