Gratitude in Leadership: A Heartfelt Tribute to Our Exceptional Executive Director

As announced earlier this month, our Executive Vice President & Director, James W. Broach, MSW, has decided to retire after 25 years of dedicated service and outstanding leadership to the CRPS/RSD community.

Jim’s legacy will continue through the numerous Warriors he has helped over the years. Take a look at the kind words and generous feedback we received since announcing his retirement.

“If it was not for Jim and, I would not be alive.” – Patty S.

“Jim answered the phone 17 yrs ago to begin my CRPS journey of education, advocacy. Over the years, Jim and I presented in a variety of forums including Hofstra medical school, Long Island Pain Management Nursing Association, National Conference of Pain Management Nurses, ran educational booths, spoke in podcasts, radio, etc. Honestly, a true champion to RSDSA and the CRPS community (medical, patients, caregivers). His endless energy has created tremendous differences for all. Thank you doesn’t express the enormity of it all. God bless you my friend.” – Beth S.

“Thank you Jim. I spoke with you personally and you made a huge impact on my life. Your help with my CRPS diagnosis meant so much to me and my family.” – Libby M.

“Jim and RSDSA have been a tremendous advocate for RSD/CRPS warriors for decades. In addition, his organization was one of the first I am aware of who generously acknowledged alternative treatment modalities as a viable consideration to reduce or even eliminate the neuropathy and physical symptoms of the disease. I am personally indebted to Jim for his support. These are indeed big shoes to fill. Wishing Jim much joy (and well deserved relaxation) in his next chapter.” – Michael C.

“Dear Jim! Thank you for your part in my journey with CRPS over the last 2 decades. It was a pleasure meeting you in person in 2013. Happy retirement!” – TV

“Congratulations!! You’ve been a light to so many and for that we are grateful! Enjoy your retirement!!” – Bonnie W.

“Congratulations, Jim! Thank you isn’t enough. Your tireless work in CRPS awareness and education saved my life. That’s not hyperbole. When I was diagnosed, I was at the absolute end of my rope. Then I miraculously found RSDSA online and you changed the course of my life. Here I am, seven years after finding a treatment plan I would never have imagined, still standing, still moving, still helping others find RSDSA. Thank you will have to do, but it hardly covers the gratitude I have for your work.” – Cory

“Jim, I spoke to you on a few occasions and I know for a fact that you helped changed lives for the better. While I hate to see you go, I think that you deserve a well deserved retirement. I hope you get to enjoy it and live life to its fullest!” – Merrie C.

If you are interested in sharing your story about how Jim has helped you navigate RSD/CRPS, please email [email protected].

After Thirteen Years of Unspeakable Suffering I Got My Life Back

Written by Jason A. Fox for the RSDSA blog.

A lot of my patients have been surprised by how understanding I am of their pain, or how quickly I can tell they are hurting before they say anything. They’re shocked to find out that behind my smiling face I have one of the most painful conditions in the world, complex regional pain syndrome (CRPS), previously known as reflex sympathetic dystrophy (RSD).

I crushed my arm in the military in 2009. There was decreased awareness about CRPS at that time. I didn’t receive the appropriate treatment and I was medically retired under a different diagnosis.

The first six years were a living nightmare. Every day it felt like my arm had been dipped in burning oil. It was weak, atrophied, partially paralyzed, and I had a terrible tremor. Some days I just wanted to cut my arm off. I know now that wouldn’t have helped! It sure seemed like a better idea at the time, but I am thankful I didn’t.

In 2017 I met an excellent physician who gave me the correct diagnosis. He helped me learn how to manage my condition. I got my pain level under control enough to finish my undergraduate studies at Liberty University. I received a lot of support from my alma mater, and they were integral in helping me learn how to be an effective student despite my disabilities. The condition thankfully went into a partial remission and became tolerable.

In 2020 I began attending Alverno College in Milwaukee to obtain a Bachelor and Master of Science in Nursing. The nursing professors at Alverno were incredibly understanding of my condition and very supportive when my condition would flare up and make it difficult to get through a lecture. The Department of Veterans Affairs also supported me throughout my recovery journey and their Vocational Rehabilitation department funded my education and provided me with the resources I needed for success. They worked hand in hand with my university to ensure I was able to meet my goals.

In December of 2022 I graduated. My first work experience after 13 years of disability was in the operating room for Aurora Medical Center – Summit in Summit, Wisconsin. They have a fantastic surgical team at Aurora Summit. My wife had an unexpected severe reaction to anesthesia during a minor procedure in 2021 while I was in school, and they saved her life. This was where I wanted to start my nursing journey. During my work there I learned that spinal cord stimulation was a possible treatment for CRPS. I met a brilliant physician there, Dr. Colin Stair, who specialized in interventional pain management. He told me if my condition ever came out of remission to come see him.

Well… it did. In a big way.

I made it through two years of nursing school and four months of work before CRPS came back and it was worse than I had ever experienced. My arm began turning purple, and it felt like it was on fire 24/7. I could no longer handle my duties as an operating room nurse and had to resign and take care of my health.

Dr. Stair and the incredible surgical team at Aurora Summit implanted the Medtronic Intellis device. The next morning when I woke up from my first surgery, I finally had a point of reference to compare my pain to. My arm hurt worse than the fresh surgical incisions in my back, with no pain medication in my system. That’s what I lived with for thirteen years. Pain worse than surgical wounds.

When we turned on the Medtronic Intellis at my follow-up appointment, I experienced complete pain relief. My arm color returned to normal, and I regained full use of the motor function in my arm with no tremor.

After thirteen years of unspeakable suffering I got my life back. 

I Became What Didn’t Exist for Myself

Written by Sally Fowler for the RSDSA blog.

I’ve been living with CRPS for 10+ years. Mine started after a horseback ride severely twisted my right arm behind my back, causing nerve damage. It took about four years to spread to full body pain, muscle spasms, tremors, brain fog, partial paralysis, loss of limb awareness, loss of balance, thermoregulation problems, and more. It took five years to be diagnosed; by then, several doctors told me there was nothing they could do for me. 

I’d planned to be a horse trainer & professional horse photographer, and went to college 843 miles from home to pursue that career. I sustained my initial injury my freshman year, two months into the first semester. I had three friends, no nearby family, and no primary doctor. I didn’t know it at the time, but that ride disabled me. Mid-way through college, I discovered a natural talent for baseball photography, and I switched my career focus to it, because I couldn’t ride anymore. By senior year, I could barely hold my camera for 30 minutes without severe pain and tremors in both arms. Riding and driving triggered hours-long neck paralysis. I didn’t get early treatment when I needed it most, because while I saw a doctor within the first year, and he did mention RSD, he was convinced I couldn’t have it because it was rare. His mistake, plus my lack of knowledge and resources meant by the time we got the diagnosis, I was already disabled, and beyond the point of traditional medical assistance. 

After college, my life was ruled by CRPS. Nowhere and nothing was without pain. I was worried and cautious. I wasn’t active. My quality of life was terrible. I felt trapped, angry, and hopeless. My boyfriend encouraged me to try photography again as a hobby. I dismissed it, reminding him of all my new limitations. He joked that all we needed to do was get me a service llama (not a real thing) that I could ride, strap the camera to its neck, and work that way. It was probably the brightest, funniest spot of my day. It sparked an idea we hadn’t considered yet – what about a service dog?

The first time I felt safe with CRPS was six years after my initial injury. 

I fell while playing outside with Robbie, my service dog, and blacked out for a few seconds. When I came to, he was pushing his nose against my face, licking me, and standing over me. My hands were burning with the pain from hitting the ground, my whole body was shaking, and I felt incredibly weak. As he had been trained, Robbie pushed his head under my arm, pushing me off the ground and onto his shoulders. From there, I pressed one hand against his chest, one hand on his shoulders, and brought myself to a stand while he assisted, standing as still as stone. Walking ever so slowly, my hand on his shoulders, Robbie led me back inside the house, helped me change into comfy clothes, and into bed, then laid nearby. What once would’ve taken 20 minutes to get to safety, Robbie did in five minutes. 

Robbie was the beginning of changing impossible to possible. There weren’t CRPS service dog trainers available to help me train him. I took my experience training horses, reapplied the knowledge to training Robbie, then developed my skills and education as a dog trainer. Today, I own a dog training business. Disabled Advantage is dedicated to helping others with CRPS train their own service dog in the U.S., and coaching people with CRPS anywhere in the world. I became what didn’t exist for myself. I’d like to share a bit about CRPS Service Dogs, and give you access to reliable information.  

What is a CRPS Service Dog?

It is a type of service dog who helps someone disabled by CRPS. Not everyone living with CRPS needs or wants a service dog’s assistance. A service dog has the potential to be as variable in its work as the CRPS is, making their assistance transformative where other approaches have failed.

What Tasks Might a CRPS Service Dog Do/How Do They Help?

Typically, service dogs do tasks (activities) that are impossible for their handler to do. CRPS service dogs provide a broader range of assistance, performing tasks which are difficult, impossible, and those known to trigger pain. The service dog doing the activity prevents the handler from developing the flare they would’ve incurred by doing it themselves, thus keeping day-to-day pain levels more stable and manageable. They work to prevent flares, assist during flares and day-to-day life functions, and help us recover after a flare, thereby increasing a person’s functionality and independence. Though not a cure, CRPS service dogs are a game changer. 

In my experience working with and talking to CRPS teams, most people need a light or heavy mobility dog, primarily assisting with mobility-based tasks, given the far-reaching impacts CRPS has on our bodies. The dogs are often cross-trained in psychiatric tasks to help with anxiety, depression, brain fog, & tasks specific to CRPS and compounding disabilities. Tasks may include:

  • Opening/closing doors
  • Assistance rising from a chair, bed, or the floor
  • Stabilization for walking, getting dressed, in/out of the tub, rising from a chair, dizzy, etc.
  • Bringing specific items or people
  • Providing deep pressure for pain/anxiety/tremors or body warmth to stabilize temperature
  • Remind to take meds, to move around, etc.
  • Moving heavy objects
  • Assisting with repetitive motion chores, such as laundry
  • Carrying flare kit in a pack
  • Guiding handler to a person or place when disoriented or post-fall

How Might I Partner with a CRPS Service Dog?

  • U.S. federal law allows people to train a service dog themselves, with a trainer’s help, or by applying for a pre-trained dog from a program or charity. Currently, there aren’t programs specifically for CRPS Service Dogs, and very few trainers know of the syndrome or what considerations go into training a dog to work with a CRPS disability. Programs typically advertise based on need, such as mobility or psychiatric, not specific conditions. Many programs don’t offer brace or balance tasks. 
  • In other countries, you must go through an organization or work with a trainer. Check ADI to find assistance. 

What Should I Consider If Training My Own?

All service dogs need to be well-built, have no health issues, the right size for the task assistance needed, and the right temperament. Before looking for a dog, you need to know what tasks you need.

  • Size – The more intense the task, the bigger the dog. Mobility dogs need size on their side to help with stabilization, opening doors, and moving objects. Any service dog must be well-balanced, well-built, and not disabled themselves. 
  • Temperament – Confident, friendly, willing to work, medium energy, focused on you, 
  • Coat – Being able to tolerate the feeling of their fur & fulfill grooming care needs is vital
  • Barking – If you have centralized CRPS, barking can trigger vertigo, passing out, and dizziness. 
  • Finances – No service dog is free or cheap. Owner-training can be $1,000/year for upkeep alone of health, toys, food, grooming, if not more. Service dog training is specialized for a reason. Your local pet shop will not be able to provide the level of training a service dog needs. 
  • Exercise – Doing their job isn’t enough. I rely on a variety of outlets, including fetch, puzzle games, walks, a treadmill, and agility.  

Can I Just Get My Dog Certified/Registered?

In the U.S., certification and registration are not required by federal law. Select areas have voluntary registries, but doing it doesn’t turn your dog into a service dog. Websites offering certification and a vest are scams. A vest and a piece of paper don’t make a service dog. Intense training over 1-2 years in obedience, socialization, public access etiquette, and task training builds a service dog, along with the dog having the right temperament and suitability for the job. 

Where Can I Find Reliable Information and/or Help?

  • Assistance Dogs International – Learn about service dogs, find a program or trainer accredited by ADI through their “member search”, best resource for international
  • Ellas Animals Inc. – a nonprofit who helps people owner-train service dogs in the U.S.

Connect with Sally via her website, Disabled Advantage Dog Training & Consulting, LLC, on Facebook via her page titled Disabled Advantage Dog Training & Consulting, LLC, Instagram via @disabledadvantage and on Patreon via disabledadvantage.

Susie’s Remission Story

Written by Susie for the RSDSA blog.

Hello, my name is Susie. I got diagnosed with CRPS in 2015.

It started in 2012 when I had plantar fascia surgery. It spread to my other foot after a dental procedure. It got so bad that I was in a wheelchair.

I was off work for two years because I was in so much pain. The treatments I did to get into remission are 1000 mg vitamin C daily, laterality training for my brain, sympathetic nerve blocks, Calmare, ketamine infusions, and finally aspinal cord stimulator.

It took me about seven months of reprogramming the spinal cord stimulator and sometimes dealing with increased pain when it was on the wrong settings. Now I charge it up and when the battery dies, I leave it off for a few weeks because the residual effect lasts for me.

I found that I had to get one of the very lowest vibration settings then leave it off for a few weeks until my feet start hurting again then I charge it up.

The pain now is nothing compared to what it was. I think all the treatments that I did contributed a little to me getting better. I use the vitamin C daily to prevent it from spreading.

I’m cautious of procedures and surgery. I’ve researched so much, bought Dr. Katinkas book, listened to numerous YouTube seminars (like the one from Dr. Getson).

I never gave up. I knew remission was possible and once I found out what I had I never stopped. I really want to help people that have CRPS. I work at Kaiser and I educate all the providers on the illness so we can spread the word.

Please consider making a donation to RSDSA today!

My Journey Is Not a Story of a Spontaneous Miracle

Written by Tamara Gurin.

My CRPS story began, like many CRPS stories, with misdiagnosis and despair over my rapidly worsening condition. Abnormal electromyography (EMG) test results led my doctor to conclude that I had carpal tunnel syndrome (CTS), despite several other symptoms that were clearly inconsistent with CTS. I disagreed with doctors, and kept searching for a more accurate diagnosis, which would offer me a solution for all of my symptoms. Meanwhile, my symptoms were spreading and getting worse: neuropathic pain in hands and arms, uncontrollable muscle contraction (dystonia), Reynaud’s Syndrome, chronic fatigue, brain fog, hypersensitivity to touch and temperature.

Once I had a correct diagnosis, which was CRPS, my doctors told me that I had to learn how to live and cope with it. I found it unacceptable. I refused to settle for anything less than a full recovery and return to a normal lifestyle. By chance, I learned about Dr. John Sarno who pioneered a novel approach to treating chronic pain conditions, and that changed everything. The day I finished reading his book, I knew I had a chance to get my life back.

It is a widely held opinion among CRPS doctors that chances of improvements for CRPS patients decrease with age. Due to my age (58 at the onset of disease) I objectively had poor prospects at beating CRPS, yet my story has a happy ending: full remission without invasive treatments or drugs.

My journey is not a story of a spontaneous miracle: I used mind-body approach but was open to working with any mainstream healthcare provider who would support me in my quest – and was able to fully recover.

After my symptoms completely disappeared 4 years ago, I ran several half-marathons, hiked to the top of Mount Whitney and continue exercising by practicing planks and pushups using the very hands and wrists that once were almost entirely incapacitated. I am a firm believer that CRPS can be defeated!

Contact Tamara at [email protected].

Please consider making a donation to RSDSA today!

My Life’s Journey With RSD

Written by Louise Plaster for the RSDSA blog.

February 17, 1992 started out like any other day. I got up and got ready for work, got my daughter ready for school and then drove my 30 mile trip to work. When I got there I prepared the machines that I operated for the day’s run. The assembly area where I worked was totally automatic and had robots. The assembly line was in a horseshoe shape and products, which were fuel pumps for cars, were sent through the line by a conveyor belt. My line came off of the main assembly line and produced the caps of the fuel pump. This particular morning I had some small parts that were sticking in the track and I had to go to the back of the machine to fix it. After a few times of this running around to the back of the machine I went underneath the conveyorbelt section that connected two of my sets of machines.

As I was coming up to astanding position I struck my left knee on a metal bracket that was located on a support leg of the conveyor belt. When I struck it I at first saw black for a few seconds. As I gotmyself together from that I took a step and the pain was so great that it felt like I was going to be sick of my stomach. And so began my journey with RSD.

I was fortunate that I didn’t have to go to very many doctors before I was diagnosed by Dr. Robert G. Schwartz in Greenville, S.C. I was diagnosed on Jan. 23, 1993. It wasn’t long after that Dr. Schwartz suggested that I attend the RSD Support Group. I was afraid to go at first. I wondered what I would see when I went there because I was a little afraid of what was happening to my body.

I had always considered myself an active person. I was never into sports, but I enjoyed working out and taking walks as exercise. I also had a good job making good money. The company that I was working for at the time sent me to Japan to train. In Japan women didn’t do the work that I did so that was an experience. On return I worked with Japanese trainers to get the line started up and into production. Then I was to train others for the job. But on that day, February 17th things started changing.

Before I went to work there I had worked for another manufacturing company for 15 years. In that job I had worked my way up the ladder from an operator to a coordinator (assistant supervisor). I grew up in this company and I learned a lot. My skills grew and expanded. I went back to school and took some classes that would help me do my job better especially when I moved into management. In my job as a technician/coordinator I had a lot of responsibilities and dealt with many types of people. It was my job to motivate them to get the job done. I also did a lot of writing in this job. I wrote evaluations of employees, training manuals and operating instructions. This training also was used at the other job where I was working when I got hurt. I wrote gauge instruction manuals there. As I look back now to that time in my life I can see I was in a type of training for my future “job.”

I did decide to go to the support group and it turned out to be one of the best decisions that I have ever made. It was good to be around others who knew where I was coming from.

It seems like from the beginning my RSD was a magnet for others whohad RSD. I started meeting people just about everywhere I went whohad RSD. I remember standing in a restaurant hearing an employee telling her manager that she had RSD. Also there was a time that I won a prize on the radio and when I went to pick up my prize, the receptionist had RSD. I would invite the people that I met to the meetings. During this time, my time working was coming to an end. It was very devastating to me when I was taken out of work. I felt hurt and useless. I had always worked and had an income. Plus I valued my work. It is my belief that how I am as a person shows through my work. So my world as I knew it was changing again.

Dr. Schwartz suggested that I use my skills in the support group. He wanted me to get more involved. He said that the group needed help to move on. I thought at the time that he must be crazy. To me, my world was crashing down. I was wondering how could I organize a group when I wasn’t doing so well with my own life.

Thankfully, Dr. Schwartz could see that getting involved in the group would be what I needed even if at the time I couldn’t see it. So in November 1993 I became the new director of the Greenville RSD Support Group. It was just what I needed to do to work on living with RSD. I did find that my skills were needed. They just needed to be re-adjusted to do what I needed them for now. I needed to use these skills to bring me back out of the black hole that I had fallen into. I was viewing RSD as ruining my life because I couldn’t do the things that I use to before RSD. I would do things because I had the mind set that if I didn’t do things like I always would have done them, then I was giving into the RSD. When I did things on a fairly good day I would over do it and pay for it for weeks on end. It finally dawned on me that this was what my RSD liked. My RSD liked that mind set and seemed to escalate with it. It also liked it when I was down. This discovery was an important part of acceptance for me. It taught me that it’s ok to make changes if it allows me to do what I want to in my life. I started looking at my RSD in a different way.

My RSD has taught me some important lessons and changed the way I do things. It taught me how to set priorities in my life. I started making a list on what I wanted to do in a day. I put what I wanted to accomplish the most on top. If I could only do one thing that day it was what was at the top of my list. I also started changing around how I did things. I realized that it wasn’t how I accomplished my goal that matter, but it was the importance of accomplishing it that did matter.

RSD also brought out my fighting spirit. It occurred to me very early on that more education was needed about RSD. Everyone I met would say, “I never heard of that.” I wanted that to change and decided to put some of my focus on changing that even if it was educating one person at a time. This is when it was decided that we needed to form the S.C. RSD Association or SCRSDA. Some were hesitate at first but some believed that we could do it. We made our mission to help educate everyone about RSD. Our first conference was held in September 1994 and so far we have continued to have it annually.

I also discovered that there are some very dedicated people who do their job well. I’ve worked with many different physical therapists since having RSD. Each one helped me to move forward in my journey. Along the way I have become a teacher. Each person who has worked with me learned about RSD. They saw it on good days and bad. They helped teach me how to deal with it one day at a time. I appreciate all their dedication and I feel that I am where I am today with my RSD partly because of them and their willingness to work with me. To keep an open mind and learn in the process. I vowed to them that when they got me moving that I would keep it up and I have. I make sure that I keep moving and do my physical therapy routine at home every day. For me, having RSD and taking care of myself is like having a full time job!

My RSD has also been used to teach others in the healthcare profession. The spreading of my RSD was even used as a learning tool. I am grateful for my RSD to be used in this way because if one person is helped by my RSD being a teaching tool than it is worth it to me.

I know that my training in my past jobs has helped me to perform my “job” with the support group. I have always enjoyed working with people. It’s something that comes natural to me. My journey with RSD has allowed me to be able to help people grasp an understanding of their RSD and what it takes to deal with it. Many tell me that I was able to help them and for that I am truly grateful. RSD has taught me that I end up helping myself by helping others. Running the support group and SCRSDA has been therapy for me. It allowed me to regain in my life what I thought that I had lost. Using this as therapy has allowed me to grow and to re-build my self-esteem and confidence that was so shaken at the beginning. I still have work to do on myself and I will continue to work on myself till the day I die.

Many people ask me “Don’t you want your old life back?” To that I have to answer “No I’m to busy living my life now and I kind of like it.” I understand now that some of my old life didn’t fade away, it was just stalled for a while. As I have improved and continue to improve I am getting back a lot of my old life. It’s just different now. I’m back to working out again, just in a different way. I take my walks on the padded indoor track at the gym. I’m doing what I enjoy when I meet and/ or talk with people who have RSD. It makes me happy to be able to help people feel better and to understand what is happening to them. It makes me feel good to see a person who was scared to have a new sound of hope in their voice or see it in their faces. So my skills from before RSD are used now but in a more profound way. My writing skills have come in handy too. I have some chapters written in Dr. Schwartz’s just released book “Resolving Complex Pain.” I’ve been able to travel some to speak at conferences and other group meetings. I’ve been able to work on RSD awareness by going to Washington DC with other RSDers. We have been able, over the years, to get stories on RSD in the newspaper and on TV. I have connected with other leaders to work together in any way possible to bring more awareness to RSD.

By managing my “good ” days I’m able to get more of them. I’m able to do more with my husband Jack, family and friends. I enjoy my 2-year old grandson, Ethan very much. I also enjoy meeting people with RSD at Dr. Schwartz’s office. I have a strong support system of folks that helps keep me going. I will never give up working on myself or my RSD.

So that is why I say, “I have RSD, but it Doesn’t Have Me”.

Training for Life

Written by Jane O’Laughlin for the RSDSA blog.

This article is for those with CRPS who are searching for a different path to manage the syndrome. The path was filled with many unexpected turns, side roads, road blocks, incredible new people in my life, and constant discovery. Today I am again an avid athlete pursuing my passions of running and swimming, with plans of competing again. I enjoy my three active kids and husband very much. And, I recently went back to work as a family nurse practitioner, a career I love.

It wasn’t always this rosy.

In January 2003, I was diagnosed with CRPS following surgical carpal tunnel repair. For six months I could not cut the food on my plate, do an ounce of housework, cooking, gardening, nor hold the little hands of my children due to severe allodynia in my right hand. Though I had formerly been an avid triathlete, pursuing sport again seemed like a far-off fantasy. The CRPS quickly spread to my other hand. I pursued physical therapy initially. Then, as symptoms worsened and my hands began to atrophy, I sought pain control through a hospital-based pain clinic.

I received stellate ganglion blocks several times, and then moved on to Neurontin® therapy for pain control. I experienced memory loss, fatigue, and felt buzzed all the time. I realized I couldn’t be the mother I wanted to be on that drug, so I asked my pain specialist to wean me off of it. I sought relief from a cadre of reputable physicians, all of whom had plenty of hope for me regarding pain control, but there was no improvement. Muscle atrophy worsened and I decided to try alternative approaches to pain control.

I tried traditional chiropractic care and acupuncture. Both gave me modest, brief relief. Then, a well-trained massage therapist referred me to Travell and Simon’s Myofascial Pain and Dysfunction: The Trigger Point Manual. I read chapter after chapter, realizing that my CRPS was likely associated with many trigger points in my muscles, which gave me enormous pain beyond the terrible burning pain of CRPS. I knew I was onto something big when some of the self-treatments for these trigger points actually gave me a little real relief. I had to find an expert in the field of neuromuscular care who was familiar with CRPS. The problem is that muscles are the “orphan organ,” physicians are rarely muscle specialists, and physical therapists weren’t entirely trained in trigger point release. I wrote to the editors of the myofascial pain texts, asking for local specialists in their field. After numerous letters and emails, I located a specialist relatively close to home. I was cautiously optimistic.

My specialist is a chiropractor trained extensively in the field of neuromuscular care, with an emphasis in muscle trigger point release. After just one visit, I knew I had found a person who could really help me. He quickly referred me to a clinical psychologist specializing in biofeedback for pain control. Working closely and frequently with both of them, I began to have pain relief.

“Run Through the Pain, Jane”
The psychologist encouraged me to look at CRPS as a pain pattern which needs overriding, not masking. If I could train my body to override the pain, I would gain control of this monster that had taken over my life. I was advised to start running again. Initially, I was terrified of the pain I knew I’d encounter and which might flare up areas that had improved with my new care. I was told “Run through the pain, Jane.” Basically, I needed sheer willpower to make this work. I was taught to apply biofeedback to running, learning how to recognize the pain signals, then letting go of them through breathing techniques and focusing on different tactile sensations while I ran. It was very painful at first, but, I persisted and found that my level of pain, its speed of onset, and the time until pain was relieved all improved with each run I took. The pain control lasted longer following my runs as I continued to train. I continued to receive frequent trigger point therapy, which allowed me to have less pain as well. I couldn’t have run without both modalities and a huge dose of determination to make it work.

After four weeks of slow but steady improvement, I began to have pain in one leg. Initially we figured it was a recurrence of some former low back pain and sciatica. Later we realized it was CRPS spreading to my lower extremities. Running became too painful, so I was encouraged to start swimming again. Formerly a competitive masters swimmer, I could swim only 100 meters before the pain was too much to continue. Still, I persisted with the encouragement of both of my doctors, applying biofeedback to pool workouts this time and receiving regular trigger point release from my doctor. I also began a home stretching program to decrease the frequency of trigger points. Steadily I improved. After two years out of the pool, I rejoined my former swimming coach and team, with whom I continue to swim today. My chiropractor and I also worked as a team, exploring numerous therapeutic modalities for the CRPS in my legs before we found a method that worked for me in that area. Again, persistence paid off. I began to run again, and, though my legs have suffered some set backs, I am running regularly again and hope to race soon.

I take no pain medications for my CRPS. Natural endorphins and cortisol release when I maintain aerobic output are the “drugs” which keep me comfortable. The nerve signals which transmit CRPS pain are overridden by nerve signals which tell my muscles to perform. I combine daily exercise with a regimen of biofeedback, 30 minutes of stretching one to two times per day, a diet filled with fruits and vegetables, chicken, fish, nuts, and complex carbohydrates, and I take high doses of Omega-3 fatty acid supplements. I see my chiropractor for trigger point release every one to three weeks. Yes, I still have a small amount of pain every day. Occasionally it flares up on me. Yes, it is manageable. Yes, it still scares me at times, and, yes, I am living a wonderful life again, even venturing back to practice as a nurse practitioner

Lessons learned

1. Without a doubt, fear of pain is a principle driving force of pain. The pain is so severe that we become afraid of it. We allow it to control our lives, anticipating its effect on everything we do. We become inactive, suffer atrophy, and the pain only grows. Once I was able to experience even a tiny bit of relief, I held onto that feeling and continually focused on mentally capturing it again and again, no matter what it required. I became more confident of pain control the more often I experienced it. It no longer controlled me. I use these feelings to fuel my workouts, which are still painful and exhausting at times. When anxiety creeps up on me, I seek support immediately, recognizing that I won’t allow myself to slide down the slippery slope of pain and fear again. My doctor is continually supporting and encouraging me.

2. Find an inspiration. Mine was my family. I knew I couldn’t let myself continue to be the mother in pain to my children, nor the wife in pain to my husband. I also dreaded the thought of being that “pain patient” that I had cared for many times in my own medical practice. These inspirations kept me searching for answers, and continue to drive my determination to practice daily self care, which can be exhausting at times.

3. Don’t isolate yourself. Formerly a very social person who loved to entertain, I found I didn’t want friends to see me hurting or unhappy. I knew I couldn’t hold up through social gatherings very long due to the pain. Rather than isolate myself, I forced myself to frequently have friends over, hosting potluck happy hours often. I’d simply pull open my silverware drawer, let someone open the wine, and allow those whom I loved to heal me with their friendships. I found that distraction is a powerful antidote to pain, often giving me several minutes at a time of pain relief if I could relax enough to get caught up in intriguing conversation. A glass of wine helped this process, as did eating wonderful food.

4. Seek professionals who have experience with trigger point release and biofeedback. Those suffering with CRPS develop trigger points frequently. Active release therapy (ART) and spray and stretch methods are very effective. Biofeedback must be done with a professional familiar with pain control. Search online. Write to textbook editors. Network with anyone you know who has experienced chronic pain. Be persistent!

5. Volunteer. Reach out to others. It’s so easy to feel despair and anger when CRPS is present. Force yourself to do something – anything – for others. Just making the elderly lady down the street a bouquet of flowers from your yard or listening to kids read at school gives our minds a good dose of fulfillment.

6. Stay the course. Just recently, I became too confident of my recovery and slacked off on biofeedback. I suffered a setback with a large CRPS flare, and the accompanying anxiety it provokes. My doctor counseled me to get back on course, reminding me that I must work harder at my daily care regimen when I feel good. Everyday I remind myself that I am doing these things to manage CRPS for today. Tomorrow is another day.

7. Finally, believe in yourself and others will, too. Never, ever give up! Now, when I shop for running or swimming supplies and am asked what event I am training for, I say, “I am training for life.”

Travell and Simon’s Myofascial Pain and Dysfunction: The Trigger Point Manual v. 1 (Hardcover) Travell JG, Simons DG. Myofascial Pain and Dysfunction: The Trigger Point Manual. Vol 1. Baltimore, MD: Williams & Wilkins; 1983.

Living with RSD- Never Give Up On Hope

Brenda discusses living with RSD while learning how to not give up on hope By Guest Blogger Brenda Refior

Brenda discusses her life before being diagnosed with RSD and all of the things she endured after a traumatic incident. Through all of this, Brenda is able to find hope and encourages readers to do the same. Find out how below.

Before I had RSD, I was a strong and happy person who loved life to the fullest. When I was nineteen, I tried out for an Olympic handball team at the Colorado Springs Olympic Training Center. I was accepted and asked to go to the Lake Placid training camp, but this conflicted with my wedding plans. I was young and felt that all of life was ahead of me, and decided not to go to Lake Placid. However, I continued to play sports and worked as much as I could.

In July 1983, I married and couldn’t have dreamed of a more beautiful wedding. A couple of years later, I started working for the local school district as a bus driver. I loved the kids and the people I worked with, and driving a school bus never got boring. But it was on a trip driving that school bus taking kids home at 5:30 at night that my life changed forever.

Stopping at an intersection, I pushed down on the accelerator, and five large sparks, fire and smoke covered my feet. I pulled over quickly, undid my seatbelt, and evacuated 25 kids from the bus.

Grabbing the fire extinguisher, I sprayed the bus as it filled with smoke, covering my body in white foam, as it floated back on me. Looking like a phantom ghost, I ran to check on the kids.

Since they hadn’t all grabbed their jackets, I jumped into the back of the smoky bus and retrieved them. No one stopped as I tried to flag down cars for help – they surely must have thought I was a ghost! Finally, police transferred the kids to a 7 Eleven where parents picked them up. I rode to the bus barn with the head maintenance supervisor. It was the most uncomfortable car ride of my life.

After receiving muscle relaxers for my aching arm, neck, back and stomach, I spent days getting worse. Most of the time, my hand was marbled and turned shades of blue and purple. It was colder than ice, yet it burned on fire, like thousands of little hot needles. Throughout this time, I continued to drive a school bus, received some commendations, and, I found out that I was pregnant!

My health got worse. My stomach burned and cramped, the diarrhea was unbearable, and I thought I was going to die. I ended up having an emergency gall bladder operation, and just two weeks later, an early C-section and exploratory surgery to see why I was having so much pain. They did not find anything.

A year later, my husband found me passed out on the bathroom floor. He rushed me to the hospital where I had major surgery. The doctors fixed a hiatal hernia, found a detached colon, (probably detached two years before when I put out the fire in the school bus), and took my appendix for the heck of it.

While in surgery, I flat–lined and they had a time bringing me back. I had a misty vision of four beings dressed in white. A strong voice said, “You will be judged, and you will judge yourself.” I thought of things that I knew were wrong that I had done to people in the past. I had to feel not only what it felt like to them, but also how it affected other people in their life. I just knew I had no chance to get into heaven. Then I got to see the good in my life. I felt the feelings of people I had been kind to or had helped, and I saw the ripple effect on other people in their life. I felt like I had made it to heaven, and I was so happy; I really can’t explain the feeling. Then the strong voice said, “You are not done. You still have something to do. You need to go back.” The next thing I knew, there was a nurse in the room and I told her what I had experienced. I asked her for a pencil and paper so I could write it down. This vision gave me faith, hope and inspiration.

Finally, in 1988, Dr. Toni McLallan, an expert on Reflex Sympathetic Dystrophy, diagnosed me with RSD. It was agony living with this pain for two long years, and nobody knew what was causing it. There was little known about RSD at the time. In the summer before I started my new job, I was strongly encouraged to spend a full month in Saint Francis Hospital’s Pain Therapy Program. There were two others in my group. I received pain meds and muscle relaxers right away. The other two were taken off their meds. It really scared me! I found out that one of them held up a pharmacy so he could get pain meds. He said he did it to make the pain go away, but he kept overdosing. Was I going to be like them in the future? Here I am on meds, great…! We swam in the morning and did physical therapy in the afternoon, and, in between, I had psychotherapy.

Bedtime was 9:00. I felt terrible that my two-year-old,Rachael, could only see me for a few precious moments a day. That was heartbreaking, to say the least. It was the longest month of my life.

I was in pain for two more years, and, once again, I thought I was going to die. My stomach burned and cramped, I had diarrhea and I couldn’t stop throwing up. I experienced sweating, passing out, and lengthy hospitalizations. I was no longer allowed to keep my job driving the school bus. It was making my right arm, neck and back pain worse. I missed driving and the kids so much. I loved that job. I was really down. I felt like I was inadequate and no good to anybody. I was offered a job in special education and I had to jump into it with everything I had, just to make myself feel like I was worth something.

While I hated to work and leave my daughter daily, my new job as a special ed. aide boosted my self-esteem. I worked there for three years and came to really love that job; the kids came to respect me. One young man I saw after school putting a butcher knife up his sleeve told me he was going to “take care of” the guy who had stolen his girl. I told him, “Listen, I’ll do my best to see that you don’t get into trouble over this at school, but you need to give me the knife.” In the end, he trusted me, listened to me, received a one-day suspension, and his uncle thanked me.

I suffered through a lot of pain working as an aide at the school. RSD was taking a toll on me. I’d work and then go home and crash. I would be in so much pain that I would come in the door after working all day and not be able to do anything at home. Poor Rachael wanted to spend time with me, but all I could do was take my meds and sleep. I joined one of the first RSD support groups in town for help. It scared me to join this group, being the youngest by sixteen years. All the ladies put their meds on the table and asked me, “What are you taking?” I kept quiet. I stayed with the group for two years, but found it a little intimidating and depressing. One woman, Shelley, had so much pain in her fingers that she could not move them. I promised myself that no matter how much pain I was in, I would work my limbs so I wouldn’t lose mobility. Let me tell you, the pain is so bad when your fingers and hands start to lock up, but you just do have to move them, because you won’t be able to use them otherwise.

Despite making a difference at school, my pain and exhaustion continued. RSD was taking a toll. The disease stole the job from me. I couldn’t do anything at home. This pain is like when one of your legs falls asleep and you have a painful tingling, achy, electrical feeling. The pain is extreme and lasts, not just seconds, but sometimes years! After four years of agony, I was willing to try a stimulator implant in my neck that would transmit an electrical current to the spinal chord. First, they put it on the Wrong Side! A month later there was a second surgery…even worse pain. I just felt like dying. This disease had robbed me not only of my health and job, but also of my ability to take care of myself. Thank goodness for my grandmother who was in her late eighties. She would say to me, “Let’s walk the mall. I need exercise!” So, we would walk the mall – and I thought I was helping her out! She was a wonderful woman.

Two years later, I discovered a doctor who agreed to take the stimulator out. I awoke from surgery and was able to use all my limbs – Thank God! I continued to see my psychiatrist who had me on meds, but I found real therapy in drawing and making mandalas, dream-catchers and presents. It gave me a sense of pride that I was able to give something I made to someone I loved.

Today, I go to a doctor who prescribes medicines that actually work. I’m able to concentrate better and control the pain better. My pain level is half what it was in my worst times. Sure, I have good days and some days my pain level is 5 to 7 on the pain scale, but I can handle that. My family and friends help me through the hard times, and now, I’m able to help them.

My faith in God and Jesus keeps me going all the time. It’s my faith and the memory of a promise that there is something more I have to do that gives me hope. There’s a reason I’m here right now, and it feels important for me to share my story. I want to tell others with RSD not to give up. Have a vision that supports you. My vision gave me hope. Never give up on hope.

Keep on going, no matter what. Don’t sit and lie down and die. Get up out of that chair, out of that bed. Keep yourself going. You’ve got to keep yourself going, and trust in God to help you make it through.

CRPS Awareness Day 15: Young Chronicle Featuring Courtney

Courtney lives with CRPS but is going to medical school to become a doctor. See what she says in the young chronicleWritten by Ashley Epping

Courtney developed CRPS when she was 14 years old in her right foot; seven years later at age 21, she is now a pre-med student at Gordon College studying biology. Unusual circumstances happened between Courtney’s story and my own.

Courtney and I went to elementary school together in 2006; I then changed school districts as we moved into middle school. Three years later, Courtney was diagnosed and informed that there was another young girl with CRPS in our city. Courtney and I were then reunited by CRPS and went on to connect our families, treatments and therapists. She was the first to enter the Chronic Pain Rehabilitation Program at Cleveland Clinic. My family and I traveled to visit the clinic where Courtney gave me tips and advice for a few weeks later when I would enter the same program. When starting this blog series on young adults, I was incredibly excited to interview Courtney and learn about her current life at college with CRPS.

When you were applying to college, did you have hesitancies because of your pain?

“Not really because since I was little I knew I wanted to go into medicine. Once I was diagnosed, I always said that I will still be a doctor, and this is not going to stop me.”

Has having CRPS influenced your medical career path?

“I knew that somehow my perspective from what I have gone through with all of this, would help me in whatever field I go into. It helps me relate to people better as I work in hospitals.”

Do you have a disabilities plan in college?

“No, my school does not know that I have CRPS but a few of my professors do. I have always had the mindset that I don’t want to be treated differently.”

In your four years at college, have you had any new pain struggles?

 “The first year was hard because my mom wasn’t there if anything happened. The main struggle was this past year when my migraines became really bad. Last spring when the migraines became debilitating, it became hard because I started to question if I was way in over my head.”

“I always said that I will still be a doctor, and this is not going to stop me.”

Currently, Courtney is interning at Harvard’s teaching hospital within allergy and inflammation research. She wants to go on to a type of pediatric specialty after graduating with her bachelor’s degree. Courtney’s pain is still prevalent and a daily struggle, but she is able to function just like anyone else. She discussed with me that, “You become accustomed to whatever you’re dealing with. When you have this pain for a long amount of time, yes it still hurts, but it would be kind of weird if it didn’t hurt. You have to become used to it.” This is almost an anthem for young adults with chronic pain because we have so much life to live and many paths to discover. We can accomplish anything we set our minds to, it just may get done a little differently.

“I recognize it may be harder with CRPS, but I am still going to do it.”

Courtney gives the advice that you have to find what motivates you to get up everyday and do it. She says, “It is why I went to college for pre-med, and why I am going go to the medical program I wanted to. I recognize it may be harder with CRPS, but I am still going to do it.” Courtney and I have stayed close friends, and we continue to support each other in our ongoing adventures.

Knock Out Pain Together – An Inspirational Story of Coming Together

Sarah Phillips-O’Steen is an ally to the CRPS community. Ever since she was 2 years old, she has been witnessing what CRPS/RSD can do to a loved one. Her father, Julian Phillips, has been living in pain since his daughter was toddling around. As Sarah will tell you, he’s always been good at hiding his pain, but she has never known him without it.

In January 2015, Julian took a terrible fall that sent him into one of the worst CRPS/RSD flare ups that he had ever experienced. This guided him into full body CRPS. While Julian was spending time in hospitals, fighting the pain, Sarah witnessed some of the grim realities that come with CRPS. Medical staff didn’t know how to handle a person in so much pain, never mind the fact that they even had the slightest idea of what CRPS/RSD was. Sarah decided enough was enough. While sitting by her father’s bedside during a ketamine infusion, she started researching awareness event ideas, primarily benefit 5k’s. She stumbled upon a 5K in Charlotte, NC that benefitted RSDSA- Fight the Flame 5K. Sarah then immediately reached out to them and established a friendship with the Stillitano family. Once Julian was released from the hospital, Sarah approached him and her family with the idea to do a 5K and to fundraise for RSDSA. Julian wanted to take it a step further and start a support group for those suffering from all types of chronic pain. Thus, Knock Out Pain was born. It is a full out family affair. Julian and Sarah’s mother work on the support group, while Sarah, her siblings (Craig and Hannah), and other family members work on fundraising and awareness. They held their first benefit that March in Trexlertown, PA.

For Sarah, RSDSA was a natural choice to donate to. According to Sarah, RSDSA has done and continue(s) to do some great things. When needing guidance to start this project, RSDSA Executive Vice President and Director Jim Broatch was there, supporting and helping her get the right contacts and start on the right foot.

Knock Out Pain 5K and 1 Mile Fun Walk will be taking place on September 17, 2017 in Easton, PA. This is their 3rd fundraising sports event and 2nd 5K. Last year, with their first 5K, they were thrilled with the 50+ participants and their hope is that they can double that figure this year. What makes this event stand out is that it’s the only 5K in the Lehigh Valley that benefits RSDSA AND it is a small family event. It is a wonderful demonstration of what happens when we are all able to come together to support a loved one in need. Sarah will tell you that the event is not a giant event that you’ll get lost in the crowd in, but it’s an event to bring people together and to make people aware of this disease that affects people worldwide, although little have heard of it. You can be the next Usain Bolt or you can be the polar opposite. All levels of runners and walkers are welcome at this event.

The overall goal of the 5K is to raise awareness for CRPS. That is the goal for the entire family. Sarah’s personal goal is to make her father proud and touch at least one person’s life. She hopes people walk or run (no pun intended) away from this 5K armed with knowledge that there are more diseases out there that impact people and their families that deserve time and attention, too! Sarah wants to make sure that people realize that diseases can be invisible and we all need to remember we shouldn’t judge anyone until we walk a day in their shoes.

Knock out pain together and join this event to help make changes in the lives of those with CRPS/RSDMaking it more of a family affair, Sarah has stated that she never would have started this had it not been for her husband supporting her through and through. They have an amazing 5K committee that includes friends of theirs on top of family- Rob, Aubrey, Mike, and Kathy. Other friends continue to support them behind the scenes by sponsoring, campaigning, web designing, graphic designing, and being a shoulder to lean on when times get stressful or emotional.

While Julian is Sarah’s number one inspiration, when she stops and thinks, she sees all of the other people and reasons that she puts on Knock Out Pain 5K. Her mother has dedicated her life to being by Julian’s side through surgeries, medications, frustrations, setbacks, and more and has continuously changed her own life around so Julian could have more of a “normal life.” Sarah states that her mother is an inspiration of what a true wife/mother/grandmother should be. Then, there are two men that have the same hopes, dreams, and desires as Sarah, which is that everyone will know of CRPS one day. Those men are her husband, Kyle, and brother, Craig.  They continue to push her and support the cause, all while working tirelessly with Sarah to make Knock Out Pain something. But, Sarah also does this for her kids and youngest sister, Hannah. The inspire her to set a good example of what a leader looks like. She wants to encourage them to set goals and achieve them, no matter what obstacles may appear.

Participating in awareness and fundraising events is important. Giving back to the cause that helps families and individuals affected by this monstrosity of a disease is important. Sarah likes to give back to those that need it. Both Sarah and her husband feel they have been blessed throughout their lives by the kindness of others, and now is the time to pay it forward.Running a Knock Out Pain event for CRPS awareness and fundraising

As Sarah stated, “What do you have to lose?” Join us at Knock Out Pain 5K on September 17, 2017. It will be a fun morning getting some exercise and/or meeting new people while learning more about CRPS. You can register for this event by clicking here. If you cannot make it out to the event, you can also give a general donation to this walk.

We are incredibly inspired by the entire Phillips/O’Steen family. Thank you to Sarah, Julian, and the rest of the family for taking on such amazing tasks within the CRPS/RSD community and for continuing to give back.  Help them help you and others with CRPS! Let’s Knock Out Pain together!