Hello, my name is Erica Stein or "Rica", as most of my close friends and family members call me. I am 43 years old and for the past 5 years have been suffering from a rare, incurable neurologic condition called Complex Regional Pain Syndrome (CRPS). CRPS is often caused by trauma or an injury but can come from something as simple as a blood draw. It is also otherwise known as "The Suicide Disease.” They call it that because CRPS is chronic, complex (hard to diagnose/treat/manage) and is progressive in nature. The pain is worse than that of childbirth, amputation (without anesthesia) or any cancer and is #1 on the McGill Pain Index Chart. Doctors have little to offer us and having to live with the constant unrelentless pain and the progressiveness that robs you of the life you once had can make hope dwindle and die.
My medical woes began at the age of 16 when I suffered a snow skiing accident causing me to undergo ACL reconstructive surgery. At that time, I was an avid soccer player with hopes of going to college on a scholarship. Those goals were squashed as I didn't fully recover. After high school, I relocated to Colorado and went to college. Over the next 15 years, I underwent 6 more major knee surgeries which experts now believe were the main cause of me developing CRPS. They called it the "perfect storm."
Throughout the first 5 surgeries, I worked full time as a Vet Tech, completed an Associate's Degree in Veterinarian Medicine and then went on to complete a Bachelor's Degree in Biology/Chemistry. I lived a very free-spirited, adventurous life exploring the mountains of Colorado and the city of Denver with my dog, hiking, backpacking, skiing, snowboarding and attending music festivals and shows. I lived independently without any close family nearby and got through my knee surgeries like any true fighter would with the help of a close friend. However, my knee finally gave out with the only option left being a total knee replacement and no doctor wanted to touch me due to my young age. I had no choice but to return to my hometown in New York to be closer to family and friends for support and care.
Less than 6 months after moving home, I was diagnosed with CRPS in March of 2018. For no known reason my toes on my left foot turned purple and black, were swollen and all I felt was extreme burning pain. It then quickly spread to my knee, then to my right leg, up my spinal cord, into both arms, my back and shoulder. I am now considered to have full-body CRPS.
Some days my pain is a level 4 but most days it's higher and too often it reaches a level 9 or10. Even after seeing many doctors and specialists, including traveling twice to Cleveland Clinic, Rochester and Buffalo, NY, undergoing multiple nerve blocks, infusions, being on lots of medications and supplements, having a spinal cord stimulator implanted twice, and going through many rounds of physical therapy including weekly pool therapy, I have gotten minimal, short-lived relief. The medical doctors have nothing more to offer me except pain medications and another stimulator.
To make things worse, starting in July 2021, I had 4 generalized tonic/clonic seizures (formally known as grand mal) and was hospitalized twice. It has taken months for me to recover from them and they have intensified my CRPS symptoms throughout my entire body, some days even making it impossible for me to get out of bed, shower, take care of myself, do household chores, or even drive. I literally depend on my family and friends to help take care of me.
In May of this year, I was also diagnosed with gastroparesis, a common comorbidity of CRPS patients. Gastroparesis is a disease in which your stomach cannot empty itself of food in a normal way. I now follow a custom diet and it’s next to impossible for me to eat out or have others prepare food for me.
My CRPS has progressed to the point where I don’t feel like I’m even living - only existing.
To tell you what my typical day looks like, there is no typical for me. Mornings are especially rough. It's not unusual for it to take 2 or more hours lying on my yoga mat before I can get up and start moving around. I just can't get up and go like normal people.
I walk from my bed to the couch and immediately get underneath a heating blanket to warm up my frostbitten legs, giving me the worst falling asleep sensations in both legs that you could ever imagine. Bone crushing burning pain as my legs “try” to warm up. I need to wear wooly socks 24-7, even in the summer. I break out in body sweats, yet my legs still feel frostbitten, even at times feeling like I'm walking on glass with broken ankles.
I dream of pain, my hands constantly rubbing my feet and legs, even "in sleep" because I never really truly sleep. I wake up on average every 1-2 hours tired, yet have a hard time falling back to sleep, only for the cycle to repeat itself.
I feel like I'm suffocating from the inside out from the inflammation. My body is constantly in "fight or flight" mode. I get frequent headaches and lots of brain fog as well as pressure/swelling on my brain. It’s hard for me to concentrate or even form sentences sometimes. Hard knots of fluid show up in random parts of my body and are extremely painful when massaged out. My knees feel like they are in a fire pit. Bee sting and sharp stabbing sensations happen anywhere on my body at any given time. At one point, I even lost the use of my arms, not being able to hold my own silverware or cell phone or drive my car. I literally lost all my independence.
I try to keep up with my household chores but always need help from friends and family. Most evenings my parents cook for me and help out with laundry and cleaning. Even running a vacuum or using a blender causes my body to go into extreme pain.
My body needs to take a lot of breaks throughout the day and social gatherings are almost impossible, even if it’s with my family. The combined voices from people talking and laughing increase my pain. I try to hide it because they can't see it, I can only feel it, so I put on my fake smile. As time goes on, I then get emotional and need to isolate myself from everyone and everything and be in total silence and darkness. If I do go in public or to a family gathering, it can take my body several days of being almost bed bound for me to recover from all the stimuli. I want to be remembered as a fun aunt to my 2 nephews, ages 10 and 5. It hurts me that I can’t play with them like I want to.
Not many understand. Some people think I'm "exaggerating or making things up.” The mental and emotional part on top of the physical pain of CRPS is exhausting. I truly feel all alone in the world.”
My parents and I have spent endless hours researching trying to find help. On one of my support groups I came across The Spero Clinic, located in Fayetteville, Arkansas. I submitted my lengthy application and was accepted into their program and put on a year’s waiting list. The clinic, founded by Dr. Katinka van der Merwe, has a unique specialized 14-week program – found nowhere else in the world and they treat the hopeless. Most patients have CRPS but they also treat other neurological conditions. Patients come from many different countries to seek their help. Their tools and techniques are holistic in nature and designed to enhance each other synergistically to restore balance to the central nervous system enabling the body to heal itself. With CRPS, the spinal cord and brain are malfunctioning, and so this approach makes sense in that the goal is to get to the root cause of the problem, not just put a band-aid on all the symptoms.
After over 9 years of practice and treating over 400 patients, The Spero Clinic has a success rate of 84.5%, which if you know anything about CRPS, that is HUGE and very hopeful. Each patient is given an individualized care/treatment plan based on the complexity of their case. Some patients may need extended time to meet their goal.
After waiting 9 months I became a patient at the Spero Clinic on September 20, 2022! I feel grateful and blessed to be undergoing treatment here. I work daily with the amazing doctors and therapists where they evaluate the whole body and restore movement and function by allowing the nervous system to do what it was designed to do.
Therapies at Spero include: Katman Vagus Nerve Therapy, Neuromuscular ReEducation, Scar Tissue Therapy (Piezo), Microcurrent Therapy, Magnetic Resonance Therapy, Ionic Therapy, Neuro-Modulation, Brain Balancing, Custom Dietary Changes, Lymphatic Therapy, Oxygen Therapy, Cold Laser Therapy and more. The therapists and doctors work with each patient on an individualized basis catering the entire program to that person’s individual needs/goal.
In the short 6 weeks that I’ve been here, I’ve seen miraculous things. I’ve seen patients that were wheelchair or bed bound stand on their own feet and even walk. I’ve seen young patients not only walk, but dance, run, laugh and play. As for me, my body is beginning to show me signs that it’s trying to heal. My light and sound sensitivities are almost completely gone allowing me to sit in the waiting room more comfortably and engage in conversations and not having to wear my sunglasses all the time,, and not be in unbearable pain from it all. My personality is coming alive and recently I experienced 4 straight days in a row of my entire body getting to ZERO pain! The longest my pain has completely stayed away is 6 hours, but even when it comes back in, the pain doesn’t come back in everywhere or in the extreme intensity. That hasn’t happened to me in 10 years! My hope and belief that I will be healed is growing with each new sign my body gives me and it’s all due to the Spero Clinic, combined with your support and prayers.
Unfortunately, there are so many costs and expenses including housing, travel, food, therapeutic devices and of course the cost of the program, none of which are covered by my insurance. My initial timeframe and cost estimate is 13 weeks and $50,000. Every month it gets re-evaluated. It is very possible my timeframe will get extended which will in turn raise the cost significantly. The costs are so insurmountable to me, even being 43 years old, as I am single and have not been able to work in over 7 years due to my medical conditions. The only income I receive is Social Security Disability Income and it’s still not enough to support me so my parents step in. My father is a disabled vet and my mother just retired. They have already spent so much of their retirement/savings to get me here and keep me here but we don’t have a money tree and all of the financial stuff stresses me out. My family and friends even put on a benefit in our hometown and the local tv station did a story on me, but I still worry because we are still far from reaching our goal.
My ultimate goal and dream is remission from CRPS. The Spero Clinic offers more hope for remission and a better quality of life for me than anything else we have found.
I hear my grandfather say, "Keep the Faith,” which of course I do and I pray every day and night for strength, courage and grit to face each day giving nothing less than 100%, even on my bad days, and will continue to pray for my body to heal.
My family and I are very excited that finally I am in a place where everyone knows CRPS and understands it and what we go through. Reading and watching videos about their success stories while at home waiting to get here, only made me more anxious to be a part of that community. Now that I’m 6 weeks in, it truly feels like my second family. There’s so much support, encouragement, kindness and love within their walls. It brings me peace and instills my hope that I will be healed.
I will be forever grateful to those that have sacrificed for me by donating thus far. I’m also extremely thankful for all prayers on my behalf for a successful treatment, healing and remission.
If you are able, I’d be forever grateful if you’d consider supporting me on this journey to save my life. I’m not good at asking people to support me financially, but due to the huge financial cost, I really need your help. I have partnered with Philip Robert from the Burning Limb Foundation. Philip was a former Spero patient and has established a foundation to help secure funding CRPS patients’ treatment costs. The Burning Limb Foundation is a 501(c)3 not-for-profit organization. All donations are tax-deductible. Unlike GoFundMe, 100% of the donations made through Burning Limb go directly to the Spero Clinic towards my treatment costs.
I promise to put in the work to make your contributions worthwhile. I’d also be grateful if you share my fundraiser with others both far and near.
I’ve had repeated dreams of “ringing the bell” for remission. Please help me make that a reality!
With Love and Gratitude,
Erica (“Rica”) Stein
Please consider donating: https://burninglimb.networkforgood.com/projects/151775-help-erica-reach-the-spero-clinic
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