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Category: Guest Blogger for RSDSA

I Want to Help as Many as I Can

Written by Alyce Rowland for the RSDSA blog.

Editor’s note: Alyce is interested in starting a CRPS support group to serve as a resource to ensure that individuals with CRPS do not encounter the struggles she experienced. To contact her, please call (859) 743-8204 or email her as [email protected].

I injured my back in December 1994. I was rushed to the hospital where they thought I had a broken shoulder blade. After several X-rays, they determined that it was not broken. So why was I in so much pain?

They sent me to a sports medicine doctor to have my symptoms evaluated and from there I was preliminary given several diagnoses. After months of medical evaluation, I was then referred to physical therapy where, unfortunately, my condition steadily worsened to where I lost total use of my arm. Then finally after my condition noticeably deteriorated, the primary doctor in the practice said he strongly suspected I had RSD/CRPS based on the symptoms I was presenting.

I was then transferred to a physician that specialized in this field of expertise. Unfortunately, at that time, there were only a few physicians that understood this condition in my area which required me to travel out of state for care. I saw him for a few months and then he disappeared. He reappeared again later only to disappear again. With my condition worsening, it was imperative that I find another doctor fast.

In this year of frustration, I had seen four or five doctors only to be dropped by them all for one reason or another. Due to the lack of treatment, my RSD/CRPS unfortunately migrated to stage 4 and no doctor would see me in my area because it was outside their scope of knowledge. By this time, I have had two blood clots and suffering from a myriad of strange symptoms. 

During the many years of coping with this difficult condition, I have learned through trial and error how the disease functions and how to best manage and/or survive this mysterious disease they say I have. Because at that time, the resources on the Internet regarding this condition were sparse or misleading all together making things just that much more confusing. (As I know now, CRPS is the only condition with the word Complex in it).

Determined to find answers, I wrote letters to doctors all over the United States. Surprisingly, only one will even agree to see me. I had to travel thousands of miles to see this doctor. After careful evaluation, he informed me that my arm is in critical condition. All the doctors up until then wouldn’t even talk about my arm despite its obvious deterioration and deformities. Now it’s four years later and I finally found a doctor that knows about RSD/CRPS. So, I will see this doctor for maybe a year as he is working to save my arm. 

It was at this time; I had made the decision that no one was going to have to go through what I had experienced to find out what RSD/CRPS is. I went into his office one day and I asked him to teach me “the doctor end” of RSD/CRPS. Tell me what it’s doing in my body. Tell me why I’m having so many blood clots. Tell me how it can progress. Tell me what I may look forward to. Teach me everything you can about this disease. It was with this knowledge and passion that I decided to start a support group for RSD/CRPS so I could help others afflicted by this disease so that they can get the compassion and knowledge they deserve. So in Jan. of 2000 with two years of knowledge of the medical end of CRPS/RSD, I started my support group. I talk one on one on the phone or answer emails. I will talk to the nearly diagnosed, newly diagnosed or those who have been fighting this for years. 

I want to help as many as I can to not have to walk down the rough road I had to walk down for many years.  

Alyce Rowland 

RSD/CRPS Support for US and Canada 

“Take Care of Maya” Netflix Documentary Commentary by CRPS Patient

Written by Melissa Wardlaw for the RSDSA blog.

Even before I watched Take Care of Maya, I knew the subject matter. I had read several articles about it, including “People” magazine, which presented Maya’s case as the cover story in June 2023. I was not, however, prepared for the utter shock and horror of what Maya and her family endured in 2017. The documentary left me heartbroken, angry, sad and frankly at a loss for words as I observed just how broken and uneducated our healthcare system is when dealing with rare and complex chronic invisible illnesses and pain. 

Maya, a mere child (9-yrs old when she was diagnosed with CRPS by a world-renowned CRPS Specialist), was in excruciating pain for which her physician ultimately recommended a ketamine coma – which helped! A year later, Maya’s pain came back in full force and she was taken to Johns Hopkins All Children’s Hospital.

In short, Maya’s mother (Beata) was unjustly accused of suffering from Munchausen Syndrome by Proxy (MSP) by a medical director there. MSP is a mental disorder wherein parents (usually the mother) of a child with rare and complex (mostly invisible) diseases either create fake symptoms or cause real symptoms to make it appear that the child is sick.

Yes, that’s right! Despite a CRPS diagnosis from a reputable physician, Beata was falsely accused of medical child abuse of her own daughter; subsequently the hospital “medically kidnapped” and took custody of Maya. Her mother was not allowed to see her and could only speak to her via phone on limited occasions and under strict supervision. Maya’s father Jack (and her brother) were allowed only short visits at the hospital.

After 87 days of Maya being in state custody and Beata fighting for Maya, Beata sadly took her own life to pave the way for her daughter to get back to her father and brother and get the treatment she desperately needed to treat her CRPS. Five days later Maya was returned to her home, albeit without her beloved mother, yet still with CRPS.

Just like Beata on behalf of Maya, most of us who live with CRPS (and other invisible complex chronic illnesses and pain) have been judged unfairly, scrutinized, told the pain is “all in our heads,” given “the look” or been questioned as to how the pain and symptoms can be that bad when we appear relatively “normal” or are able to do such and such a task?

Well, I’m here to tell you the pain of CRPS IS that bad. According to the McGill pain scale, it is the most severe form of chronic pain there is and also known as the “suicide disease.” Like most parents who have children with rare diseases, Beata was simply fighting and advocating for her young daughter who was suffering in unrelenting pain only to be punished for it. What would you do for your child? What, if anything, should Beata have done differently? WHY did this have to happen?

There are too many distressing clips in the film to discuss, however this is for sure – Beata, a nurse by profession, was a fierce advocate and documented everything as we are taught to do living with a complex, rare and misunderstood (mostly invisible) disease with symptoms and pain that defy logic. Her detailed documentation (including recorded phone calls) and exasperation is shown in the documentary and paints a disturbing picture of the manipulative case workers and “medical professionals” who were out to make things even more difficult for this family and for young Maya, who was fighting for her life and needed her mother.

In the final court hearing before her death, Beata asked if she could hug her daughter – a simple request which was denied. Maya would never get that hug and would never see her mother alive again.

As an adult with CRPS (and multiple other medical issues), my mother has been my rock. Throughout my diagnosis and in fact, all these years later, I would not be here without her unwavering support, unconditional love, selfless caregiving and advocacy. The hospital and Dr. Sally Smith, with her false allegations, took something away from Maya that is irreplaceable – a lifetime of mother’s love and compassion. It angers me to my soul for Maya and her family and every family and patient with a complex disease that has had to go through something similar at the hands of power hungry and uneducated physicians, who, instead of fulfilling their Hippocratic Oath to “do no harm,” they in fact do the opposite.

After Maya was released back to her father and brother, Maya’s diagnosis of CRPS was confirmed by a separate CRPS physician. According to reports, Maya still has CRPS and will always have it as it is incurable, although she is doing much better. We can only hope her family now gets the justice they deserve in a $220M lawsuit filed against the hospital (and other parties) set for trial in September 2023. The family has already settled with the accusing physician for $2.5M.

My deepest sympathies and condolences go out to Maya and the Kowalski family. For more information about Maya’s case, please see the “People” magazine article here. For additional information on CRPS please visit: rsds.org. If you are experiencing suicidal thoughts, please contact the Crisis Text Line by calling 988 or texting “START”(741741).

We Will Not Stop Fighting

Written by the Hon. Jenn Coffey for the RSDSA blog.

I want to share with you the work that I am doing and ask you for your help. People with CRPS know all too well the pain of being denied access to medical treatments and medications that could improve our lives. What is grotesque is that often the denial will state, “not approved for the treatment of complex regional pain syndrome.” For the record, the FDA to this date has never approved anything for the treatment of CRPS. That fact is lost on the elected and our neighbors. It’s time to change that. 

I was recently invited to speak in the United States Capital during a Healthcare for All town hall. Gathered on the stage were doctors from various specialties, talking about the struggles to get the care their patients need. Listening to the heartbreak of a pediatrician is sobering. As the patient on the panel, it was my job to paint a picture that the audience could really imagine and understand. For most of those in the room, it was the first time they had heard of Complex Regional Pain Syndrome. Having been led to believe that cancer is the worst pain, there I stood, as evidence to the contrary. 

I spoke about access to care, but also the roadblocks to the very medications that have shown promise, and for some, have changed their lives. My story is like countless others of those who could see a light ahead but had to find a way to buy themselves into care. In my case that has turned out to be ketamine infusions, Low Dose Naltrexone (LDN), and Mestinon, all of which ended my two-year nightmare of being bedbound. Allowing me to function in the world as more of a participant, instead of a viewer of other people’s lives. I have no doubt that hundreds of thousands of people could get their lives back if only they could have these medications. If only they could try a treatment and see if that allows them to have meaningful time with their families, and not be relegated to a bed while watching life go by on a Zoom call. 

I made the decision to go public with my story after sitting in on a meeting about national healthcare. We talked about all the ways that insurance companies deny access to care. There are hoops that they force people to jump through, often leaving them exhausted and unable to navigate the fight. Anytime I have tried to deal with the insurance company, I have always ended up thinking that this person doesn’t know anything about what they’re talking about. All they would do, time and again, was read the booklet to me. As far as understanding what they are reading or how it works in healthcare, that didn’t matter, because the only real point was to find a path to denial of care. Decisions are being made by computers, which in mere seconds can deny care to thousands. 

After nearly 20 years working in medicine, I was fighting to get access to the care I once helped give. America is unique in that we are the only country that attaches our healthcare to our jobs. We all think we have great benefits until we really need them. It was less than two months after my cancer diagnosis that I was out of a job. If I can’t work, I can’t buy health insurance, so now what?

I was lucky to be taken on as a case by People’s Action. This organization disseminated the information throughout the 40 national organizations it represents. We launched the campaign the same day that United Healthcare boasted over eight billion dollars in profit for the first quarter of 2023. That’s just three months. We made videos and I did interviews. The Twitter campaign caught fire. Over 4,000 people signed the petition making it hard for United Healthcare to ignore me. The video was viewed thousands of times and shared. It went up on a Friday, and by Monday, I had a message asking me to contact United Healthcare. They had been successfully shamed into talking to me. 

The one thing that I thought they would never cover, ketamine infusions, was the first approval we won! I am concerned that they will refuse further treatments, but I am sure that they know I will not stay quiet about it either. Now that I know how much work and the hours it takes to get care approved, I’m sharing that with elected officials. They need a clear picture of what we are up against. There would be more appeals filed if people were not intimidated, worn down, and defeated by the process. The private for-profit insurance companies count on it. 

We need to remind people about something. Private for-profit health insurance companies do nothing to increase positive outcomes in medicine. They are the roadblocks, even brick walls, that stand between us and our providers. They are our death panels. It’s time to end the stranglehold they have over all our lives.

Very soon I will travel back to DC, and work with People’s Action to help teach what we have learned, so other organizations can take that knowledge back to their home states, and help more people fight back and win against greedy insurance companies. 

Stay tuned for more videos and more work. We will not stop fighting until everyone, no matter who they are, or where they are from, can access the treatments and medications that their providers use to better and extend their lives. I need you to help fight for those in need, whether it’s signing and sharing a petition, writing to elected officials, or running for office yourself so that you can be the one to bring about healthcare for all.

Please consider making a donation to RSDSA today!

Don’t Allow Someone Else to Minimize Your Journey

Written by Julie Bennett for RSDSA blog.

How and when did you develop CRPS/RSD?

When I was 13 years old I was playing football for an extension out of University of Illinois. They would recruit teens to play for a select team, and then once they started college you would get a full ride scholarship for University of Illinois.

On June 21, 2013 we were playing a football game. I was tackled and landed wrong. The coaches said they heard my hip pop from the other end of the field. The male that tackled me broke two vertebrae in his neck. He now lives in a wheelchair.

My hip ball was fractured, my femur was fractured, the hip joint/pelvis was fractured, and I tore all the ligaments, tendons, and muscles from my left pelvis to my left knee. We were in another state at the time, and did not get home till June 24. By that time I could not sit or walk. I was dragging my leg behind me. My father took me to the ER and after lots of tests I was told everything I listed above. I was told I needed surgery.

However, I choose to not get surgery right away. I hoped to fix it with physical therapy. On Christmas Eve 2013 I went in for emergency surgery, after another fall that completely broke the ball of my hip. The surgery lasted 4.5 hours. I woke up alone in the hospital scared and in pain. I was told in six months I would be back to normal. However this is where things got worse.

Instead of getting better I became worse. The incisions would not heal, the pain way unparalleled. My left leg became cold as if not getting blood flow. I was tested for blood clots, had lots of imaging, and more, but nothing was found wrong. It took three-and-a-half years and seven different doctors, in three different states until I finally found a pain management doctor in Missouri who, after seeing and talking to me for two minutes, diagnosed me with CRPS type 2. 

What has daily life been like since your diagnosis?

From 2013-2015 I spent most of my time in a wheelchair. My left leg was too week and using crutches made the pain worse. After my diagnosis, I went through spinal injection, steriod injections, six hip surgeries, nine spinal surgeries, including a spinal cord stimulator that malfunctioned and was replaced with a dorsal ganglion implant. I am on my second drg implant now.

I spent most of my teen years in hospitals undergoing treatments, tests, experimental treatments. Some of those included being in an induced coma and receiving ketemine, spinal injections, immune suppressant drugs, neurological medications, and more. In 2014, I was diagnosed with childhood endometrial cancer and went through chemotherapy. Since my diagnosis, I have been diagnosed with two blood disorders, Fibermyalgia, a liver disorder, EOG (a stomach disease), my eyesight has began to fail, I get sick easily, I have to walk with a crutch, I have complex sleep apnea, PCOS, endometriosis, and POTS. I spent years in physical therapy and aquatic therapy. I lost my dream of being a Marien, however I did work for the Department of Defense for two years. I’m now retired and on disability at 23.

I spend everyday in excruciating pain. I cannot stand to wear clothing for long periods, I’m sensitive to light, simple tasks are hard for me to achieve, and my short term memory is horrible. I’m in doctors offices or treatments at least three times a week. I have over $7000 in medical debt just for this year and I am on 13 medication and six herbal remedies. I can’t do a lot of activity or exercise. Somedays it’s hard to get out of bed. Life is full of pain, mental and physical.

What is one thing you wish those without CRPS/RSD could understand?

CRPS/RSD is considered an invisible disease, so it’s hard for others to understand how much is effected. CRPS is a neurological disorder that is slowly killing off your neurological system and it effects everything from mood, to ability to walk, to think. It is not something that we want. It’s not a dream or nice to have to be retired at 23 because my body is failing me. 

What advice would you give to newly diagnosed Warriors?

Don’t give up. This journey is hard and does not end, BUT you need to enjoy the little things. Find something to be passionate about. Don’t neglect your mental health. 

What encouragement would you give to Warriors who have had CRPS/RSD for many years?

When I was first diagnosed CRPS was not taught in medical schools. Most doctors did not know it exists. Now, it is taught in some medical schools, and it is being researched. There is always hope that help or a cure will be found. 

What activities or treatments have helped you find temporary or long term relief?

Marijuana and my DRG implant. They are not perfect but it allows some relief. But most of all, allow your body to rest when it needs it. On good days, do what you can, but never over do it. If you do you are going to feel a lot worse. 

Anything else you would like to add? 

CRPS is a horrible disease. Most people, even with CRPS, don’t understand CRPS fully. Don’t allow someone else to minimize your journey because theirs is not as bad or the same as yours. Every warrior is a warrior.

Connect with Julie on Facebook here.

Please consider making a donation to RSDSA today!

I Wouldn’t Change a Single Day That I’ve Lived

Written by Judy Hopkins for the New Jersey Rare Disease Council.

My journey with CRPS, also known as RSD, began 24 years ago, as a result of a surgery in which a nerve was severed and never repaired. CRPS is a chronic neurologic pain disorder that is the most highly misdiagnosed disease in the US. The pain is commonly described as being doused in gasoline and lit on fire.

For many, including myself, diagnosis comes too late and aggressive treatment even later; that the disease process has spread not only throughout the extremities, but into the organs, causing autonomic dysfunction. This makes treatment options limited and remission even less likely. I’m one of the lucky ones who has known remission.

Thirteen years ago I landed in Germany for what would be my second Ketamine coma. After seven days in a coma, I awoke in complete remission and remained that way for the most amazing four months of my life. It was the first time in nine years that I was able to live my life with no pain, allowing me to ride my bike, play basketball and go dancing. Unfortunately, I found a tumor in my knee, requiring immediate surgery, restarting the disease process that has determined my life for 24 years.

Those four months of remission were the greatest of my life and I know that one day I will live without pain and with a fully functioning body once again, but until then, I go for inpatient treatment every three months and take medication to prevent/control flares. This is life with RSD, it’s not always pretty and it’s a disease that makes most people feel isolated from society, friends and even family. I’m fortunate enough to have the most amazing support system, but most do not. 

When I was about to enter my junior year of college as a theatre major in the theatre and dance department at Montclair State University, I became too sick to continue. After spending 14 years bedridden and/or homebound, I am now in a place where I have been able to complete my undergraduate degree in psychology and will be applying to graduate school in the fall to attain my PsyD in clinical psychology.

CRPS is what is referred to as an invisible disease, most sufferers don’t “look sick” and because of that, are doubted by the ones they should be able to rely on most. It is also an orphan disease and therefore, receives no federal funding. This is why my parents and I set out to raise money for a private organization, Reflex Sympathetic Dystrophy Syndrome Association. They provide education to medical professionals, support for the CRPS community and fund research projects to try to find viable treatments for people suffering from this horrendous disease.

My family and I have hosted a walk in Ocean Township annually for the last four years. We have thus far raised more than $80,000. Awareness is so important when it comes to rare diseases, educating those who know nothing about a debilitating disease that has the highest suicide rate of any chronic illness. I have endured two comas, staph infection, sepsis, 27 operations, years of a bedridden life and more hospitalizations than I could count, and I would never have survived it without my family and friends by my side.

I wouldn’t change a single day that I’ve lived, because it has taught me to treasure the amazing days and not to focus on the tough days. Life is never easy, but for some suffering becomes a normal part of our day. I hope that this counsel will reach all those in our state that are suffering in silence and let them know they are not alone and that there are people out there who believe them and want to help them to keep fighting for the life they deserve. Thank you for your consideration.  

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!

The Top 10 Shoe Brands for CRPS From a CRPS Perspective

Written by Guest Blogger Ashley Epping

I developed CRPS at 12 years old in my left wrist. After being diagnosed, I spent the
next six years dancing competitively, staying at the Pediatric Cleveland Clinic, creating
art, traveling abroad and applying to colleges. I never once thought about my shoe
choice because I didn’t need to. Though I would always see others in my support
groups posting photos of shoes that worked for them, and to be honest most were not
versatile enough to wear for specific occasions such as professional or dressy settings.
For the first six years my pain was only located in my upper body, but in the following
years the pain spread to the lower regions. For the first time in my life, I was not able to
purchase shoes based on the fact that they were cute. I am a 22 year old business
student, living in New York City. The typical CRPS friendly shoes were not an option for
me.

I spent the next few months observing and researching shoes that could serve all
purposes. I needed shoes that were equipped for walking, standing, exercising, and
were standard for business, social, and/or dressy occasions. All the while serving relief
for CRPS symptoms. I needed shoes that could handle swelling, hyper sensitivity, poor
balance and support painful legs.

I was successful in finding shoes that fit my lifestyle, and I figure that others may have
the same issues I did when looking for shoes. I have put together a list of my findings
for all CRPS sufferers who are in need of some kicks.

The Top 10 Shoe Brands for CRPS Warriors

1. Teva
Teva sells an arrangement of sandals, sneakers and boots, but their most
accommodating shoe for swollen and sensitive feet are their adjustable strap sandals.
The sandals adjust at the ankle and around the ball of the foot to create the perfect fit
everyday no matter the severity of symptoms.

2. Eurosoft
Eurosoft is made up of mostly fashion forward products; shoes that are meant to be
worn for style, while also keeping you comfortable throughout the day. The shoes are
created with padding in the sole and arch supportive. They offer casual open slip ons for
day to day wear, and also offer wedges for a more fancy occasion. Eurosoft is sold by
wholesalers, but the most convenient locations are Amazon, DSW and [sic] JCPenny’s.

3. Sketchers
Sketchers offer boots and sandals, but their sneakers are worn most often for CRPS.
Sketcher’s sneakers offer light weight technology, air-cooled memory foam, and flexible
soles.

4. Christian Dietz
This brand is on the [sic] pricy side, but if you are looking to make an investment these
shoes will last you years. Their products range from sneakers to dress wear to
orthopedics; allowing all different accommodations. These shoes are incredibly fit for
people who wear braces. Christian Dietz is sold through the store Enslow, which has
been serving the medical community since 1909.

5. New Balance
New balance is a commercial sneaker brand, but has recently come out with NBRx
Performance Foot Health products. These sneakers are categorized by running, walking
and insole options. New Balance connects doctor’s recommendations to certified retail
partners and trained fit specialists to fit you with the right sneaker.

6. Dankso
Dankso has a wide range of products, but the most supportive and specialized shoe for
CRPS purposes is their clog model. Though these shoes are not highly recommended
for walking long distances, they are one of the top shoe brands for people who need to
stand for long periods of time.

7. Birkenstock
The most CRPS friendly products from Birkenstock’s are the slip on Arizona sandals,
and the slip on Boston clogs. These shoes are made to be adjustable and roomy for
cozy socks, and/or in our case for swollen, sensitive feet. These products tend to be a
little pricy, but they are real leather, which does last for a very long time.

8. Ecco
Ecco offers a variety of products, but the best ones for sensitive feet are their slip on
booties, flats, and casual sneakers. This brand has created a feature using premium
materials plus dynamic comfort. They use “next generation platform technology” which
is inspired by nature and old world leather. In case a fancy occasion arises they also
offer low heel pumps with the same comfort technology.

9. Adidas
Adidas is a commercial brand, but they have come out with their Ultra Boost technology,
which are designed to propel you forward while maintaining your stability. They are
engineered to expand with your foot and avoid irritation, and come with rubber soles
that have extraordinary grip for wet and dry surfaces. These sneakers are the favorable
choice for the gym or physical therapy.

10. Naturalizer
Naturalizer offers incredible options for professional shoes; if you are looking for a shoe
with a small lift, that are sleek, durable for walking and standing, than their a top choice.
Their prices have a wide range, but lower prices can be found through their retailers
such as Nordstrom Rack and DSW.

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.