My name is Brooklyn and I was diagnosed with CRPS at the age of 13 and I am now 19. As I child I have always been clumsy and broken the same arm about 4 or more times. The last time I broke it I broke both my ulna and radius and half and had to get a closed reduction and 2 more surgeries. After my arm was set, I experienced excruciating pain and then was diagnosed with CRPS. My nails were turned downwards, I was in extreme constant burning pain, allodynia, and abnormal hair growth on my arm. I have been treated by two pain teams and done multiple CRPS treatments, many that have not worked and made it worse. Though the burning pain still persists, it is much more manageable. I found that swimming, painting and rock climbing have helped with my range of motion and strength! As well as a biphosphate infusion!! I am in school to become a nurse want to make a difference in kids and family’s lives like they did in mine. Also honourable mention to my family, girlfriend, friends and pets for making all the difference A good support system is a must! and heating pack hehe! 

My name is Faith and in July of 2021 I started having arm pain and swelling out of nowhere. Then I started going to doctor after doctor until earlier this year I had a bone scan and was diagnosed with CRPS type 1. I had my surgery for a spinal stimulator and it went well. I'm still having pain, but not as much. I like to read and listen to music and bake. 

My name is Serena Huffine. I am 28 years old and live in east Tennessee in the United States. My Instagram username is @voicing_pain

This is my CRPS story:

I was officially diagnosed with CRPS at The International Research Foundation for RSD/CRPS in Florida in August of 2023. I began having symptoms of CRPS two years ago. My case is very mysterious because I fractured my left foot when I was 8 years old, however, I didn't show significant symptoms of CRPS until I had just turned 26 years old. My feet had always burned and hurt if I stood for too long throughout the years, but I thought nothing of it.

In September of 2021, I was admitted to my local ER for excruciatingly painful symptoms of trigeminal neuralgia and nerve pain in my face and head. Although it hasn't officially been determined by a doctor, we suspect that the trigeminal neuralgia symptoms may actually be CRPS. I was treated poorly at my local ER during multiple visits, and they could not figure out what was wrong with me. Neither could a neurologist and doctors at other local hospitals. 

Due to restrictions in healthcare and insurance qualifications in the state of Tennessee, I have still not been able to receive any health insurance since all of this started. Because I aged out of my dad's insurance policy, and because I cannot work due to the nature of my pain, I am forced to see a doctor at a low-income clinic in my area. 

I am still fighting for Social Security disability benefits after being turned down multiple times, as well. Meanwhile, my condition is continuing to spread. I have trouble walking some days, and I have very bad pain flares weekly. I have to be in a wheelchair occasionally, and use a cane to get around a lot of the time.

My father has had to sell many of his most valuable possessions just to have the money for us to be able to go to the Spine Institute in Florida for me to receive ketamine infusions to get some relief for my pain. We are exhausting our resources and doing everything we can to get me some help. The waiting period has been very difficult for me. 

To conquer CRPS, I turn to music. I majored in music in college, and I am a flutist who has won international level performance awards from the London Young Musician competition, twice. I play in my local community band. I am also an artist and enjoy drawing and creating digital art. 

To get some activity and exercise in, I like to go swimming.

My name is Joe Cremona, I’m 32, and currently reside in Nutley, NJ, USA!

My story starts back when I was 16 and had the first of (what I would later discover) 15 surgeries on my left leg. Growing up, I always felt different, and a great part of that feeling came from the fact that my legs were not the same length. My left leg was shorter by two inches, which I learned is pretty significant, orthopedically speaking. I wore orthopedic lifts and orthotics to supplement the discrepancy, but by 16, I had had enough and wanted to wear regular shoes for once and just feel normal. 

I underwent a leg lengthening operation, in which they break your tibia and fibula, and they place an apparatus known as a fixator (similar to those that Forrest Gump wore) on your leg through the bone. Every day you needed to turn the fixator, via a t wrench, one full rotation every day. This specific device had a new design which my doctor had not tried yet, and my doctor found it appropriate to use me as the guinea pig. 

It seemed as though every single doctor's appointment that followed resulted in more bad news, which normally implied another surgery. I was determined to not have to miss school simply because of surgery. Every summer for me involved some form of surgery, since I had a summer break (both in high school and college). 

Fast forward to about the thirteenth surgery - I was at physical therapy and one of my femoral plates loosened. I had to have surgery to remove it (which happened in my graduate year when I was months away from getting my master's in teaching). In that January, I had a femoral plate replaced and then three weeks before graduation, I was working as a substitute/leave replacement teacher and had some of the worst pain of my life. I later learned that I had MRSA and needed to go to the emergency room as soon as possible to get treatment.

For years following, I would continually get misdiagnosed, and at times, it led me to have more pain. It wasn't until my current pain management doctor (after being mistreated by a doctor who just prescribed pain medication) suggested that I may have CRPS. When I looked up my symptoms, I remember being in disbelief that I FINALLY felt seen and heard. Between oral medication and nerve block injections, along with physical therapy and chiropractic care, my CRPS is managed. It didn't stop me from getting two master's degrees and working toward my doctorate. I am so grateful that this diagnosis gave me a community of my own! 

A Painful Beginning

Like many people, I don't remember much before the age of 4. That's quite typical, isn't it? What I do remember, though, is constant pain - an unwelcome companion that seemed to never leave my side. It started when I was just a 4-year-old girl, and suffered a crush injury to my hand. Medicine has come a long way since then. Anesthesia wasn't gentle on my young body, and pediatric pain care was still in its infancy. Can you believe I used to get Aspirin mixed with jam on a spoon from my parents? And dissolvable stitches? Those were unheard of. When the skin grew over the regular stitches, they had to be soaked and carefully cut out. Imagine being that young and learning to navigate the world with just one hand. My parents did their best to make my life as normal as possible, and I had to figure out how to do the same chores as my siblings, but with one hand. It was a challenging time that left a lasting impact on me, teaching me values like putting on a brave face and being resilient. Not surprisingly, I developed a deep fear of hospitals.

Experiencing Early Signs of CRPS

As I grew, so did the number of surgeries I had to endure. Each time, I faced them with determination, refusing to complain or upset anyone around me. My rehab to strengthen muscles and stretch tendons involved an interesting twist - piano lessons. Since we didn't own a piano, one of our neighbors down the street graciously allowed me to come and play theirs. Those neighbors soon became dear family friends and even attended my wedding many years later. Sometimes, the brightest friendships emerge from the darkest times. It's curious how no one ever diagnosed me with CRPS during those years, despite many symptoms that now clearly pointed in that direction. Instead, people labeled me as "accident-prone", "overly sensitive" and "unable to handle excitement." I'd often throw up before attending special events and even missed most of my family's weddings as a child. My teenage years brought yet another injury – torn ligaments in my leg. The typical treatment was a half-cast, which supported the lower part of my leg from hip to ankle. I couldn't bear that cast for more than 24 hours, and I begged to have it removed! Looking back, it's so much clearer now. But back then, I was still about 30 years away from a correct diagnosis.

Maybe I Can Ignore This and Hope It Goes Away

Fast forward to my adulthood. The pain continued, as well as my aversion to seeing doctors, except when I took my children for their check-ups. I chose instead to be stoic and focus on my family, and just cope with migraines and occasional joint lockups, especially in my shoulders and neck. It seemed less risky than seeking medical care. But in 2003, while working at the tiny primary school my kids attended, my world took an unexpected turn. The school was a lovely place for both my children and me, and even though I didn't earn much, it was enough to cover tuition with a little extra. My job allowed me to stay creative and fulfilled. I loved my work and cherished the camaraderie with the staff. Then, one day, I woke up with knee pain. It was strange because I couldn't recall an injury that might have caused it, except maybe bumping it against a desk leg occasionally. I brushed it off, thinking it would heal with time. But instead, my knee grew increasingly sensitive and

swollen. When I finally consulted our family doctor, he diagnosed it as "Housemaid's knee" and suggested a cortisone injection. This did alleviate the swelling, but the pain remained, and only got

worse. In just 48 hours, the area above my knee developed a small crater with a deep red-blue color. I struggled to put any weight on my leg, and even the gentlest touch or breeze felt excruciating. It was so unbearable that I had to stop wearing long pants because the fabric rubbing against my leg felt like torture. I even had to give up sheets and blankets. Even the dog’s tail- wagging as he walked by was enough to make me catch my breath! Sound familiar to you?

I returned to my doctor, who was completely baffled by this unexpected turn of events. What followed were two years of medical consultations, referrals, scans, and blood work. I spent countless hours in waiting rooms, often waiting for overbooked doctors. The first nerve conduction test was a failure – the doctor couldn't even complete it because the slightest stimulus caused me extreme pain. Isn't it odd that nobody recognized these classic CRPS symptoms?

Throughout this period, I found it increasingly difficult to perform my job, as my ability to think clearly faded. Nights were even worse; I couldn't sleep well due to the medications I was prescribed to manage the pain. I visited physiotherapists, chiropractors, neurologists, orthopedic surgeons, and sports medicine specialists. I was subjected to a battery of tests, including bone scans, MRIs, X-rays, lab work, and experimented with topical creams. None was able to pinpoint the cause of this malady.

Finding the Turning Point

As I grew more exhausted and struggled to process my thoughts, the frustration of seeing no results from any scan or test deepened. Then, an orthopedic surgeon told me something that made everything click – there was no synovial fluid left in my knee. He could inject some every six months to help, but our health insurance wouldn't cover it because they considered it an internal brace, and they only covered external ones. And yes, I had tried those too, numerous knee braces in search of one that didn't cause excruciating pain. This was the first time I had to fund my medical care. The surgeon’s fees were covered, but the prescription was not. It took two long years before I tearfully told my doctor that I could no longer cope. He called a physiotherapist friend. She agreed to take me that night, look at previous test results and examine my leg to figure out what was going on. She was the first person who identified the real problem with my leg. That appointment marked the true beginning of my journey with CRPS. The diagnosis finally arrived, and I felt an overwhelming sense of jubilation, even though others around me couldn't quite share my enthusiasm.

Living with CRPS: A Cruel Master

Living with CRPS is like having a relentless and unpredictable tormentor. It brings constant pain, ranging from mild discomfort to excruciating agony. The slightest touch, a passing breeze or minor temperature change can trigger waves of pain. CRPS doesn't just stop at physical torment; it takes a toll on mental and emotional well-being, too. Coping with chronic pain often leads to depression, anxiety and a deep sense of isolation. The frustration of not being understood by those who haven't experienced CRPS can be equally challenging. It';s a complex condition that touches every facet of life, from daily routines to long-term plans.

Seeking Relief: The Challenge of Treatment

One of the most trying aspects of CRPS is its limited treatment options. Medications, physical therapy, nerve blocks, and spinal cord stimulation are some of the approaches used to manage the pain, but they don't work the same way for everyone. Finding the right treatment plan often means wading through trial and error, which can be frustrating and disheartening. Further, a treatment that initially brings relief can lose its strength over time.

A Ray of Hope: The Coma Trial

But amidst the challenges, there is a glimmer of hope. The medical community is increasingly recognizing CRPS, leading to more research and a deeper understanding of the condition. Clinical trials and innovative treatments are emerging, offering new possibilities for those living with CRPS. One such beacon of hope was the seven-day ketamine coma trial. While it may sound unconventional, it involves inducing a coma in patients with CRPS to reset their nervous systems. Though experimental at the time and not without risks, it provided great relief for many who had tried it.

My Coma Trial Experience

By early 2009, I faced a medical impasse. My pain doctor had exhausted all conventional options. However, I had heard of using high dose ketamine and also the research being done putting patients in a Ketamine-induced coma. My specialist agreed to help me see the doctor at the CRPS/RSD Research Center in Tampa, Florida. Our healthcare covered the consultation and 3 days of ketamine infusions, but no travel or accommodations. I knew that I could also be considered for the coma trials. As a research trial, it was not only costly and unfunded by our health care plan, but would involve traveling to Monterrey, Mexico. My twin sister, Faith Wood along with a talented group of friends, rallied to raise the necessary funds in just four months. She even wrote a book about our fundraising journey, titled 'Fundraising on a Shoestring'.

In late August, I had the ketamine infusions without significant relief. A few weeks later, my husband and I traveled to Mexico and met Dr Cantu.The concept was intriguing: just as a computer often resets when experiencing glitches, the coma treatment aimed to reset the brain and body's pain messages. I accepted the risks because I believed it was my last chance at a life without relentless pain. And trusted God to watch over me. When I woke up from the coma, I experienced something miraculous – there was absolutely no nerve pain! It felt like winning the lottery. We returned home around Thanksgiving. Although the effects were not permanent for me, I had gained immeasurable relief. I could hug my children and everyone else, a simple joy I had yearned for. Over the next year, I made several trips back to Dr Cantu attempting to maintain more permanent relief through supplemental non-coma treatments, but eventually the trips took their toll, the cost/benefit balance waned, and I had to cease the supplemental treatments.

Furry Companions: The Role of Service Dogs

My journey with CRPS took another turn when I learned about the potential benefits of a service dog. These amazing animals can aid in countless ways, from fetching items to providing emotional support during the most challenging moments. After a thorough application process and some patience, I was matched with a service dog – Bellatrix. Having a furry companion by my side has been a game- changer, bringing not just practical assistance but also a sense of comfort and companionship that's hard to put into

words.

A Brighter Future: Advocacy and Awareness

I want to emphasize that, while living with CRPS is fraught with daily challenges, it also reveals the remarkable resilience of the human spirit. Those of us who confront this condition with unwavering determination show that even in the darkest of times, there's room for hope and the potential for progress. The journey might be tough, but with the support of medical professionals, loved ones, and a community of fellow CRPS warriors, there is a path forward. Together, we can continue to raise awareness, advocate for research, and inspire hope for a brighter future for all those affected by Complex Regional Pain Syndrome.

Hello! 

My name is Nadia, I am a 33 year old CRPS warrior, and I am also daughter to an amazing mother, a very lucky girlfriend, a good friend to few but amazing individuals, and I was a nurse until a work injury six years ago rendered me unable to physically care for others, and even unable to care for myself. 

My CRPS battle started in the left foot in 2017, and within months it was affecting my lower leg all the way to the knee, and I started to lose a major amount of weight due to a lack of appetite caused by all the pain. That didn’t keep me from trying to actively find solutions to feel better. I found other CRPS warriors with whom I’ve connected to share our trials and errors when it comes to alternative treatments to reduce the pain. I read a lot about how important the mindset is, and decided to accumulate many different tools and advice through therapy, to avoid going to a dark place. Being limited in what I am able to do made me realize how lucky we are to do all those things we take for granted, and I decided to enjoy the smallest of things, rejoice in the little surprises that come along the way, may it be a stranger’s smile, a cuddle from my cat, hearing my mom’s laughter, a warm embrace from my spouse.. I started living in the moment as much as I could and I challenged myself to find more and more things to be grateful for in a day. 

The battle hasn’t been easy: the symptoms CRPS mixed with those of dysautonomia are very hard to deal with, and I’ve had my share of fainting from the pain, needing to be carried to bed, etc., but I keep my head up and I look for the silver lining. I wouldn’t have met my amazing partner had it not been for CRPS. I have learned to love myself and praise myself for something other than my work as a nurse. I have discovered a depth about this life of ours. I am not the same person I was before my injury, and I am okay with that. I hope for a better quality of life, but I am finding many things to keep me happy in the present, because I know things can take a turn for the worse in the blink of an eye. The CRPS that initially affected my left foot found itself spreading upwards my body up to the waist, and spread to the whole right leg and foot as well. It made me realize that always waiting to feel better before doing something leads to me to not live the present moment, in the ability that I have at that time. 

Despite the CRPS spreading to both legs up to the waist, I have remained optimistic that things will turn around and I will walk again. I work hard every day doing physiotherapy exercises, visualization, meditation, desensitization, you name it! Consistency is key, although I have learned to listen to my body and allow it to rest when the days become too challenging. I am awaiting a spinal cord stimulator, which I have high hopes will reduce my pain enough that it will help me gain momentum in my recovery, to give me back my deeply desired independence. 

Sending soft hugs to all you warriors, and to our allies! I know how hard this battle can be, and I am so proud of all of you for continuing to fight!

Thank you for reading my story! 

Nadia Chayer Leblond 

Hi my name is Tamura, most know me as Tammy, Terpy Tammy or Tammy with Toms Palms. Yes I used  to be that lady on Joey Giggle Radio Show for a few months back in 1999 about health insurance in the USA. I'm writing this to hopefully inspire you to know, You Can Still!!! I hope this lets you know you Can DO, I have a brain still thinking and finding my way through a life living in horrible pain has certainly not been easy. When first asked to write something I thought, what do I write about the story we've all heard over and over about how we feel screwed over by medical care, seeking whatever we can to find a solution to our pain. What I have learned over the years is to keep going, don't let anyone tell you how to feel or act. You don't have to explain yourself even though you feel you need to. It's on each person to allow another person to make us feel a certain way. I've learned over the years that making myself comfortable staying down always wasn't my way to be. I was a very busy working wife and mom to two little girls. In March, 1993 I slipped and fell on my wet mopped kitchen floor running for the phone. Back then they were attacked by a cord to a  wall. I know a funny concept to you youngins out there. Fell and broke my lateral malleolus and injured my achilles tendon. It was wrapped at the ER and I was sent to Orthopedic. Ortho put it into a cast to the knee. In September I was playing softball, played since I was 7. Slipped on my way to first base, not a slide honestly it's not appropriate to slide to first base. Broke it all over again and injured that Achllies again ugh, next Ortho Walking Cast this time. Finally out of cast and being careful. I was at the playground with my girls, I was showing them how to slide down the fireman pole and darn if I didn't land on that bad leg. Broke it all over again and injured that Achillies all over again too oh no. After almost a year it never ever seemed to heal. I was working all this time in the medical field. First I was working for a hand surgeon with a physical therapy office. I was front desk there, during the first and second break. During the healing of 3rd break I was then working in the Physical Therapy desk for a hospital and a Physiatrist was running this facility. I then upon that year of not healing had seen an Orthopedic doctor top in his field in Las Vegas, NV. He wanted to do exploratory surgery after a trigger point injection failed. I still say this is when the RSD started after that injection. Have you seen the needles they use for these with springs and all inside them? This was 1995, at this time I went to work for a pain management specialist. Now I had heard of RSD at the hand surgeons office, I knew it was something I never ever wanted to be diagnosed with for sure. The things I had already seen on patients I just knew I wanted nothing to ever do with that! For the Pain doc to say to me, Hey I could do this sympathetic block to rule out RSD. He said those words, I said What!?! For real??? He said one block will tell us hopefully what we need to know, if it doesn't do anything it just doesn't prove it. Let's try it as it's more diagnostic than anything. I agreed and had it done within a week. Now I was an insurance specialist explaining these procedures to the insurance companies to make sure the doctor was getting paid top dollar for his services. So I witnessed what was going to happen. I have to tell you I'm not so sure it's good to know everything up front either! The block actually worked, my left was warm even to the touch. Anyone could touch it and it was super warm and the pain was gone, I hadn't been without pain for over 2 years at this point. It didn't last long but as you all know when you have any pain relief you'll take it. The hope is it calms it down and stays away but it was more diagnostic in proving I actually have RSD. Now so you know there was confusion if this procedure didn't prove RSD what it could be. Well that's why they came up with the name CRPS, it used to be called Causalgia back in Civil War days when they first discovered RSD/CRPS. It's had many names over the years. Now that medicare uses the CRPS all can receive medical care, medications, treatments and social security with this additional diagnosis of CRPS. We can all appreciate this process although it needs a big change. In order to get to the point of proving CRPS is horrible. Lets rule out everything under the sun to make sure it isn't something  else. The money spent by so many of us and our insurance companies is mind boggling to say the least as a patient! I've never been a wealthy person, I certainly live paycheck to paycheck although the government would like to take that from us also. Along the way I somehow managed to keep going. in 1998 While working I was vomiting so much and spending so much time in the bathroom and breaks laying down. The doctor I worked for said,Tammy you need to go on disability. I said What? " What do you mean you don't want me to work for you anymore?" They said oh we want you to work but you just can't. You need to take care of your family. Well I was flabbergasted. I have worked since I was 14 years old. I had 2 young daughters ages 4 and 8. My husband used to be a police officer and was doing security work in Vegas. I was the big breadwinner of the house, how will we survive? I never had to ask for help. I always paid my own way, to not work anymore I kind of lost myself for a while. Medical was so daunting at the time trying to figure out how to feel better just to live each day was a huge struggle. I didn't mention that in 1995 I also went through a trial Spinal Cord Stimulator, SCS. It was the top line of treatment for RSD next to a Spinal Pump. In 1996 I had the first SCS implanted, if only I knew now what I knew then. Although it is still the number one treatment for RSD/CRPS. Just ask your doctor if they know about what they can do to us with RSD/CRPS and when they say yes, or say no and ask the makers they implant. The answer they come back with is, it's still the number one treatment next to the spinal pump for RSD/CRPS. I'm here to tell you it was wonderful at first. It kept me working for 2 more years that I'm sure I wouldn't have worked without it. However no one tells you about Scar tissue build up. Yes this happens around the device as it's in you for so long. Happens to all at different extents of course as everything else with this crazy disease, we are all different in what helps us. So 1998 came around and the doctor and employer told me to go on disability. I'm like what at 32 they are going to let me be on disability. So the process was started soon after. I thought I knew a lot dealing with insurance companies but the government on disability is a whole new ballgame. File first yourself, get denial then contact an attorney. (hint, look for an attorney that spends time at the Social Security Office. Ask for help from the Law Librarian at the main Law Library; they get paid to help you. Attorneys will take your case for free upon winning only and have a cap on their fees). Okay did that, but it took almost 2 whole years to get my Social Security Disability.  If it wasn't for family and welfare we wouldn't have made it and stayed in our home. We struggled like I had never struggled before. Struggles make your life worth it especially when you win. I've since been through so much that life struggles can become quite hard when you least expect it. As the years have gone by a lot has happened in my life, you know Life Happens when we make plans. I said the blessing I had by no longer working is that I was there to raise my kids. I didn't know what I was missing out on.  Finally raising kids, my Oldest graduate high school year early gets married and has first grandchild. By now I'm 40, became a grandma and needed glasses. My Steve passed in 2010, losing the Love of my Life was the hardest thing I have ever been through in my life. He took care of me and in the end I took care of him along with help from our daughters. One left at home for another year then she was off to marry a military man and moved away. My Dad passed away 6 months later unexpectedly, trust devastated isn't even the right word to use through all this Life! My oldest had moved to Arizona to be with my Mom. We didn't want her alone when Dad suddenly passed. Within a year I was selling my home to move to Arizona. Scared changing doctors and I worked with all my doctors. I knew most of them personally. Little did I know leaving Nevada and moving to Arizona I was going to lose benefits. Strange thought that Nevada has no state taxes but has so much help. Arizona doesn't even come close to the help I received there. But this is my new home now, I spent all my money moving and getting all the things set up I needed. Soon after my Mom had a stroke. Thank God I was living with her and found her that next morning. By the time I have been through so much in my life, Steve was my second husband. I was a widow at a young age after my first husband was in a horrible work accident with toxic waste that later took his life. I was left with a one year old which Steve adopted after our marriage. Trust when I say God is good as He was always making sure I'm taking care of. Although life isn't done yet with me at times I do wish it was! No worries I know RSDs number one killer is suicide but I believe thats Gods choice not mine. After all of this it amazes me what I've accomplished since. Life is never dull for sure. My mom recovered from her stroke by 2012. By 2013 I finally found a Brain and Spinal specialist to remove my SCS. He lasered it off my spine, thank you Lord for guiding his hands. He was able to laser off most of the scar tissue that had built up and remove the SCS in full. You can certainly see where the battery was. There is still a kind of hole there filled with fat that hardened. It bothers me still now and then and now the area cleaned up once in mid spine is starting to cause pain again. That scar tissue was most painful and I did so much better after having it all removed. I could even wear a full bra again, those who have gone through a stimulator implanted in the thoracic area can relate. My moms medical issues were moved into a facility and I moved into an apartment I rented and rented a room from my Aunt. Everyone said beware, I never thought I had to worry about a relative. Before I knew it over $6,000 was gone my Aunt needed help and suddenly no way to pay it back. We lost our place, everything went to storage and I was now homeless. I thought I had been through everything. How could all this happen to me, I prayed hard and searched for help to find nothing. I couch surfed and slept in my car 3 nights in a 6 month period. Then a friend heard how I was living and offered me a small room she had at her house. It was her laundry room as the washer and dryer had been moved outside. Of course I took it and she didn't need the first and last month's rent. I had a place to put my bed and my tv, a dresser and all my clothes. I could share the full house. It was my saving point and I had moved items into the house to help them also. During this time my Mom became ill during Covid things were so tough I'm sure you can all relate in some way. My mom never understood why we couldn't be with her. I would get calls stating, I would never not go see my mom when in the hospital. She just couldn't understand, they say our minds go when you're cooped up between four walls. I say hers certainly did and we lost mom in 2020. Not from Covid but because of Covid. They continued to cancel her surgery to remove her dead kidney they continued to call an elective surgery. How is it then her cause of death is Kidney failure. Anyways life goes on no matter what we do! Before mom passed I had started feeding and clothing people. Let's back up a minute because the best part of life during this time is I found in 2017 CBD. I learned how to use it as tincture under my tongue 3 times a day and sometimes at night too. You can't do too much of it but you need to do enough to help heal. That's just what it did for me. Pretty soon I wasn't taking pain meds, my kidney disease no more and my diabetes in check for more than 5 years now. During trauma and loss I gained weight each time something happened in my life. Loss of job, husband, dad by this time I was almost 400 lbs. CBD also helped me lose weight and the change of eating finding out I'm diabetic. I lost over 205 lbs. which was a big plus I wasn't expecting. At the time I found CBD I was on 6 #10 Percocets, 3 350 mg Soma the horrid Gabapentin (this drug will add weight and keep it on you if not careful) along with 26 different medications a day. One time I was on fentanyl and morphine and percocets at the same time from patches to you name it. I learned that the healthier I was with what I put into my body that I felt better. Before I knew it I was off all my medications and no longer in a wheelchair. I'm sure this also helped with weight loss. I'm here to tell you weight is so NOT our friend and with this illness it makes it much harder to deal with! Trust I'm not saying anything to anyone. I was my worst enemy and I didn't treat my body very kindly over the years. Shame on me but I've taken control of my life and changed it little by little and in the end it's a big deal! Since getting out of the wheelchair I've taken what my Dad showed us our whole lives and God talks about in the bible. That is helping other people, this world sure needs a lesson in taking care of people in need! My dad had always given people food or helped elderly move in different ways to help his neighbor. He was a teamster truck driver who talked often about the people he met along his travels. Stopping to eat he would see someone with a sign and offer them to come eat with him. A lot of times it was an In-N-Out burger or a restaurant depending where he was. He would break out his old testament and witness and pray for them then send them on their way. Many times I heard people ask, is your dad for real? No one is that nice. I often replied, nope that's my Dad! He often said we can't be Jesus but we can strive to be as much like him as possible. Certainly isn't going to make you a bad person. I started feeding people with a few friends I've met here in Phoenix. It's grown into quite a big deal in helping other humans survive another day. We have resources to help anyone wishing to get out of the streets. From various rehabilitations to women and children's homes to veteran help. We obtain IDs for those without an address and resources of 7 companies to hire one that doesn't do a background check. I can't always be in the streets or at an event speaking about what we do. But I am behind the scenes organizing and out as much as I can. This last winter was brutal and I'm back on some medications now. Over all CBD and THC have been my help in staying off horrible drugs so I can live a life. I do have to take some sometimes but overall learning how to help myself and what helps me has been life altering to  say the least. Now to be looking into a cure would be great in my lifetime. But then I have seen a lot in my 60 years and half of my 30 years with RSD/CRPS. Always someone worse off than I am. It's not an end of life, it's a stumble along the way of life that I had no choice but to learn to LIVE with. You can Live to trust that. This day and age you can do anything you wish, find a way to do it. By the way, if you're wondering how I run a company while on disability. Check it out, in the USA it's possible, I could but I do not receive an income of any kind. I'm sure you've all seen the world these days. Too many unsheltered humans, all our funds for Toms Palms goes to help others. Not one person on our board as all are Volunteer based! If I can do it, anyone can!!! People really want to help People. Thank You for taking time to read my story. I'm just an everyday person with a horrible disease that I refuse to let rule my life. It has for too long and I'm just dragging RSD along for the ride now. Go get what you want out of life, it's up to each of you. The internet is a tool to be used the right way and can change your life. It did mine by keeping me in contact with the world when I couldn't be. Find You - Be You - Only You Can Do You - You Can!  Here's to more tolerable days! #rsdcrpsdoesntownme  

Hello! My name is Zach. I am a 20 year old transgender man from St. Louis, Missouri. I have a rare neurological condition known as Complex Regional Pain Syndrome (CRPS, aka RSD or the “Suicide Disease”) along with several other chronic diseases.

I was diagnosed with CRPS in early 2020, just before the pandemic hit the US. I had sustained a sporting injury from the previous spring season, allowing for CRPS to develop and spread from my right hand/arm. It is now in my spine, and I am waiting for my spinal cord stimulator trial this summer.

I have gone through many treatments, medications, occupational therapy and surgery in order to slow the spread throughout my body. Most have been unsuccessful, however. Treatments include nerve blocks, lidocaine infusions, red light therapy, Tens unit, to name a few.

Today, I raise awareness for my conditions through a social media blog called Ty’s Chronic Adventures. I use this platform to showcase daily living with disability and chronic illness, to let others know that they are not alone in their struggles.

I encourage you to get to know me! Connect with me through the username: @tyschronicadventures or ‘Ty’s Chronic Adventures’ on Instagram, Facebook, YouTube, and TikTok. I love having the opportunity to hear other voices and meeting warriors alike. Remember, you CAN get through this!

My name is Shawn O'Brien. In January 2018, I had a work related injury from a skid falling off a forklift that hit me in the soft part of my shoulder and cracked a bone. It wasn't enough to have surgery, so it had to heal on its own. A month later, my left arm and hand started to swell, it kept getting bigger and bigger. A doctor said it looked like CRPS but wasn't sure, so he sent me to a pain specialist. Dr B said she was going to put me on a ketamine IV drip, it would be one of 4 sessions of Ketamine that they would have to do. 

For the first one, I was so drugged up that I slept for 6 hours. It was the best sleep I had since being diagnosed with CRPS. Over the next few months, I had Ketamine 3 more times and each time, nothing worked for me. I saw another pain specialist, Dr G, who was going to try a drug that they only had enough for 3 patients, hoping it would work, but it did not. I had a very bad reaction to this drug. They didn't know what to do for me, so they sent me to physio. After 4 months of physio, my arm and hand continued to get bigger. 

My Physiotherapist found another therapist who specializes in CRPS. He worked on me for over 1 year, and like the Ketamine, nothing worked. He suggested the best thing for me would be amputation. So we found a surgeon in Toronto who agreed to amputation after a few more tests. I had a bone scan and they tried another MRI, but by this time my arm was so big it wouldn't fit in the machine. The technician tried for about an hour, but couldn't do it without out hurting me. They did a cat scan and x-rays instead. When I went back to see this new specialist for my amputation, he decided to send me to yet another pain specialist in Toronto who would make the final decision about my amputation. 

Back to Toronto for the 3rd time, the Dr informed me that I had 3 options to try. The first was another Ketamine drip, the second was a Spinal Cord Stimulator and the third option took him awhile to talk about because it was amputation.  I told him that amputation was the best option for me as Ketmine didn't work and I had concerns about the Spinal Cord Stimulator. So we made the decision to amputate. The Dr had to send his report to the surgeon, who then wanted to do more tests again before amputating. I got mad. I told him I was tired of being a guinea pig and the tests were not going to happen. That surgeon had the nerve to tell me that I was faking it and to see him in 2 years. Then maybe he will amputate. Thank God that I was seeing a psychologist too, Dr K. I had to make an appointment as I was leaving the surgeons office so I did not snap. I see Dr K once a week or as many times as I need to. So now I had to find a surgeon who would amputate without making me feel like a guinea pig. Dr R is a plastic surgeon in London, and the way my arm was, the amputation was for health. 

In December of 2019, Dr R made me sign all kinds of paperwork to have the amputation done. I was told that he would be calling me with the surgery date and he did. My surgery was March 13, 2020. It is now 2 years. Dr R said I was the first person in Canada to have a Trans-radial amputation from CRPS. The day of my surgery, they did a sympathetic nerve block to try and stop the CRPS after the surgery. As for me, my life was about to change after I woke up from the surgery. The surgery itself was about 90 minutes but the recovery time was 3 hours. When I got back to my room, I was scared to look. So my wife showed me on my right arm how much was amputated. The next day (March 14), the surgeon who worked with Dr R came into my room and took the bandages off to see. I asked him to take a picture of it and when I was ready, I would look. The surgeon waited until my wife and kids were in the room to tell us that if the arm wasn't amputated when it was, I might have lasted a month before I died. The arm was so far gone, they have never seen anything like it before me. It had to be double bagged to be disposed of. I spent 3 days in the hospital and 7 days in a hotel before I was allowed to come home, due to COVID. I was home by March 21 and my new life would begin with one arm and no more CRPS. I thought. In July, I began having a difficult time with my amputation, but my wife, family and close friends were by my side. In November, I did a news story on CRPS to help people and more doctors understand that CRPS is no joke. One day I would like to be an advocate for CRPS.

Now, not only do I have to deal with my amputation, but I have to deal with CRPS all over again. I used to be an outdoor person, but now I don't leave my home. I now suffer from panic attacks and my house is my safe zone. I thank my wife for being there for me though all of this, she deserves a medal for this. On really bad days, I can go to that dark spot in my brain, but I have a saying on the fridge that my wife gave me. It says "I cannot lose you, because if I ever did, I'd have lost my best friend, my soul mate, my smile, my laugh, my everything" and that helps bring me back. I am also seeing a psychiatrist, and when I can't talk to him, I can call my brother from another mother, Philip. He also helps me quite a bit at times. Philip might as well be my psychiatrist also lol 

Now that CRPS is back, I am helping a friend that I met in London, who also has CRPS. Philip has an 11 year old son who has CRPS in his feet, I help him a lot too. So if I wasn't around, they wouldn't have nobody to lean on and have to fight this battle on their own. So no matter how much pain I am in, I go one day at a time to fight this horrible disease, and learn how to do stuff with my one arm. So now I joke that my wife is my left arm, and I love her so much for it. 

Thank you for letting me tell my story, this is my story that is going in a book that an author in the states wrote. It will be out soon. I am also writing a book that will be coming out once I get my mental health to a level that I can handle. Philips 11 year old son will also be writing a book on how he is handling CRPS. Hopefully this story will help friends and family understand what we go through on a daily basis. I wouldn't wish this disease on my worst enemy.

My name is Sylvie Tress and I am 27 years old. I was born and raised in Toronto, Canada. I was a curious child, always exploring and learning, despite having a chronic illness from a very young age. I have experienced scattered symptoms and hospitalizations, but I still tried to enjoy everything life could offer me. From a very early age I developed the love of reading, which would get me through many difficult times throughout my life. In my teen years, despite experiencing more and more symptoms, a diagnosis was still elusive.

At the age of 19, September of 2014, I was about to start University to study Neuroscience, which I think is the most beautiful, interesting and ever-expanding field and has been my passion for many years. On the 23rd of September, my life changed forever. I woke up screaming in pain in my spine and was rushed to the hospital. That was the beginning of this very difficult journey, which continues to present challenges. I was prescribed a multitude of medications and I still couldn’t leave my apartment due to the extreme pain. The pain progressed from my spine to my feet and I became non-ambulatory. I started using a manual wheelchair, as I could not bear any weight on my feet. In fact, nothing could touch my feet, not even a light sheet. The neuropathy progressed to my hands within months, although much less severe, and I have since been in a motorized wheelchair.

It took five years and many specialists to finally be given a diagnosis of Non-Length Dependent Small Fiber Neuropathy (SFN), immune mediated. I wasn't able to return to my apartment, as I needed care and equipment. After almost a year stay at a hospital, I moved to a wheelchair accessible apartment, with personal support workers. I spent my days reading, educating my self on my conditions and my passions, reading literature, crafting, doing puzzles and trying to distract myself.

Having a chronic illness with daily, unrelenting, severe pain, changes your life and changes you. I persevered, I adjusted my priorities, set different goals. Once again, life took another harsh turn and in November of 2021, I was diagnosed with CRPS, a consequence of an injury to my left hand. According to current research, having SFN makes you more susceptible to getting CRPS after an injury, as the small nerve fibers are already malfunctioning. Unfortunately having been on all the medications they give for CRPS, for years on maximum doses, including pain medications, my options were very limited. I had been getting ketamine infusions for SFN, and I immediately got nerve blocks and continue getting them. I have had treatment with bisphosphonates specifically for CRPS and continued having plasma infusions (I.V.I.G.) which I was getting for SFN which, some small research studies show efficacy with the inflammatory component of CRPS.

Despite all these different treatments, the pain in my hand with the CRPS has barely responded. I continue to suffer excruciating pain and allodynia to the point that even a light breeze on my left hand is unbearable. I sank into a deep depression, having only my right limb left to use. For the first time in my life I gave up reading, the one thing that not only gave pleasure, but also comfort and solace. Life had become unbearable! I had already spent 8 years leaving my home only for hospital visits and medical appointments. The pain was excruciating. I lost my last semblance of independence, and with it, another part of my identity. But through the darkness, I found a part of myself that was stronger and more resilient! I spent the next seven months in and out of hospital. In June of 2022, on my birthday life had another surprise for me: I was diagnosed with a rare Autoinflammatory disease. This also complicates my CRPS, as the inflammation throughout my body causes my CRPS to become much more painful. Having an autoinflammatory disease excludes me from getting a spinal cord neurostimulator, another blow. So once again, I did what I always do to cope. I plunged myself into research.

Recently, I sustained an injury to my left elbow, which is causing my CRPS to be worse than it has ever been. I’ve had episodes of passing out from the extreme pain and was diagnosed with cardio-neurogenic syncope. I have spent nine years of my life, fighting, persevering and finding ways to cope through severe pain, illness, and disability.

I grieve the life I lost, and I try to hold on to the hope of a better future. Through this journey I've been on, I have discovered who I really am and what I'm capable of. I am a warrior and I will never give up! I have always looked for the “Silver Lining” in every situation I find myself in. I find the humour in difficult situations and I am not afraid to poke fun at myself and laugh along with others.

Despite having lost so much, I endure all that life has thrown my way, I rise up, and with fortitude and determination, I find meaning and purpose, helping people with the research I do, spreading awareness, involving myself in advocacy and reading inspirational books about people that have overcome adversity. I choose Hope, and that is a conscious choice I make every single day. In the words of Mary Shelley, in Frankenstein:“Life, although it may only be an accumulation of anguish, is dear to me, and I will defend it.”

My dream has always been to study neuroscience and specialize in research focusing on neurological pain. I am more determined than ever, and if I ever get healthy enough to pursue this dream, I will dedicate my life on finding the underlying mechanisms for CRPS, which still elude us, so we may be able to develop better treatments and possibly a cure one day.

I will never give up, not only because it's in my nature, but also because I truly believe science advances exponentially. I live by this quote:

“All human wisdom is contained in these two words--'Wait and Hope.” ― Alexandre Dumas, The Count of Monte Cristo

I hope my story and my journey gives hope to anybody reading this who is struggling to hold on!

Please follow my journey on:

IG: @SilverrLinings63

Other socials coming soon, and hopefully a website (health-permitting).

Selena has always been a natural leader and empath, driven by success. She grew up in Kingston, Ontario where she lived until age 15. She then moved to Toronto, then Hamilton and made her way to Windsor, Ontario for University, where she lives today. Selena received her degree in psychology and has always been very interested in mental health and the well being of all around her. As a manager, she was very involved in her team's success and celebrated their successes as her own.

On February 26, 2019 Selena's life changed forever. She was at work at 9:45am when suddenly she was unable to move the entire right side of her body. It felt like her right arm was on fire. Being that she was only 35 years old and had a sore back the night before, Selena thought she had a pinched nerve or something. She contacted her mother to come and take her to a walk-in clinic, "I think I need a chiropractor or something". There was no way she could drive like this

Her mother lived an hour away and it was late in the afternoon when she arrived. Both Selena and her mother started to realize that this may in fact be a medical emergency. They went to a clinic first and then were sent to the hospital. Selena was a medical mystery to the doctors in emergency and noone could figure out what was going on. She was quickly transferred to another hospital and admitted to the stroke unit. The stroke unit? There were so many medical professionals consulting on her case it was difficult to remember who was who.

It was not until March 3, 2019 that a neurosurgeon who had been following Selena's case approached her with a proposed surgical option that may help her regain some function. They were still unsure and offered no guarantees. The initial thought was that she had suffered a spinal stroke. 

It was decided, a chance of success was better than nothing and Selena underwent anterior cervical discectomy and fusion (ACDF). C5 to C7 of her cervical spine had been replaced with titanium. Selena underwent intense physical and occupational therapy. She is able to walk again although still has some difficulty and gets tripped up sometimes. Her stubbornness and determination paid off. 

Selena has not regained the use of her right hand and says she knew right away that it was going to be a problem. Her first diagnosis came as CRPS in her right hand and arm, but still noone knew what had caused the initial event. It wasn't until she sat in diagnosis purgatory for 2.5 years that she was told she had suffered idiopathic transverse myelitis.

Selena has tried a number of different treatments to try and control her CRPS, including Stellate Ganglion Nerve blocks, medications, ketamine infusions and most recently she received a Spinal Cord Stimulator (SCS). She is the first to admit that she was a skeptic of the SCS but it has provided the most benefit. Unfortunately, Selena's CRPS has now spread to her right leg as well.

February 26, 2023 marked 4 years since Selena's life changed forever. She is a single mom with 2 teenagers. A son, 16 and a daughter who is 14. She also has 2 9 month old Golden Retriever puppies. She has always loved a challenge.

Selena has been a part of her local CRPS group for a couple of years now helping to organize group calls and one on one sessions. She has also volunteered with an organization called Siegel Rare Neuroimmune Association, where she acts as a Peer Connect Leader. She was flown to LA in October to do a presentation on mental health first aid.

Selena has a lot of exciting things in the works. She is creating and preparing to release a vlog about her story and the affects disability and illness have on mental health. She is becoming more active and involved with Conquer CRPS and is also collaborating on a Podcast about living with CRPS, stay tuned. She is definitely someone to keep your eye on.

Growing up in the Greater Toronto Area, Ontario, Canada through the 80’s, and 90’s, Matt found himself hooked towards technology. Matt slowly became a gamer at heart, and a Warrior in spirit. Matt slowly evolved his game preferences from mid ‘90’s JRPG’s with smash hits like Chrono Trigger and Final Fantasy 7, or sports franchises involving hockey, baseball, soccer, and basketball into a catalog that grew to include multiple consoles and all gaming genres including Nintendo, PlayStation, PC, and Steam Deck gaming. As Matt grew through his professional career, he kept social awareness as a frame of thought and had no idea the path life would lead him on through his late 30’s, which would include a diagnosis of Complex Regional Pain Syndrome (2015) and Testicular Cancer (2020). 

Time passed, career changes were made, a family was raised, at 33 years old life came to a stop. Matt was diagnosed with lower limb Complex Regional Pain Syndrome on the right leg after breaking his foot while playing hockey. After a15-month medical battle including a comminuted break of the 5th metatarsal, a 6” plate and 5 fixation screws,2 achilles tendon tears, 3 ankle ligament tears, a grade 2 right ACL tear, and grade 3 right MCL complete tear, Matt has grown to adopt a life of the Warrior and is an Ambulatory Wheelchair User. With the progression of CRPS from October 1,2015 to present day, Matt is recognized with his past with work with non-profit organizations, strategic corporate social awareness campaigns and direct knowledge how a NFP operates in Canada. Matt has held the positions of Executive Director Operations for the CRPS/RSD Canada Foundation, as well as Regional Volunteer Chair for a membership group of 4,000+ businesses in Ontario, and Chief Executive Office of the Warriors and Survivors eSports Gaming Lounge. 

With the lack of resources in Canada in relation to patient first CRPS materials, Matt progressed through several complex pain clinics, and received trigger point injections, pharmaceuticals, massage therapy, cognitive behavior therapy, hypnotherapy, water desensitization tank, and ketamine/Lidocaine infusions for treatment resistant depression. These experiences through a difficult and arduous healthcare system lead Matt to receiving a Spinal Cord Stimulator in October 2019with positive results for DRG therapy and T5/lower spine pain. 

As Matt began to apply and receive Federal and Provincial paperwork, one by one, Matt was able to check off several points to create a business profile, brand, team and heart, something magical was happening behind the scenes. Matt grew his personal knowledge of Computer infrastructure, website development, and digital media creation in both film and still image photography. A new life was born out of the chaos of CRPS and Cancer. With a focus on digital editing, media creation and the social connectedness that online gaming can represent, Matt provides the strength behind the curious clues that are dropped on social media about gaming events, a life, and modified sports with CRPS, and positive body movement, the role of CIO is a tailored fit for an engaging, charismatic, and resilient CRPS Warrior. Each role has allowed Matt to grow, adapt, and apply his 20+ years of business experience in running successful non-profits in Ontario.  

With that thought at the forefront of Matt’s mind as he explored the support provided from friends and family, Matt pushed the window of a fun way to give back to the cancer community and men’s mental health via running 2 successful funding campaigns which exceeded a personal target of $450 and achieving $845 in 6 short weeks. This campaign has Matt dye his hair ultraviolet purple in support of Movember Canada and Hearth Place. It was a start to something fun, and Matt and his family realized his love of gaming, and social connectedness online, or playing in esports leagues had a support structure that could be organically grown to provide a fun, safe, exciting and engaging play space for all to enjoy.  

Matt gives great credit to his family, as the idea, thought, creation, and execution of a digital media lab, esports gaming centre, local multiplayer experience could be created to support Warriors, Survivors and Caregivers to Cancer. A play where casual gamers can connect with those who need a fun distraction and, and ultimately through a professional mobile support lounge, a social network can be created to give back to the community. 

Matt Brown

Matt.brown@wsegl.ca 

@throughthelensaofawarrior

www.throughthelensofawarrior.com

Hi, my name is Sally Fowler. I live in Missouri with my husband, two rabbits, and my service dog in training, Austin. I'm a dog trainer and a coach for people navigating life with CRPS, based on my own experiences of living with CRPS for 12 years. Prior to developing CRPS, I was a horse trainer and photographer, and collegiate and independent professional baseball photographer. In college, a horseback accident caused nerve damage in my right shoulder and I developed CRPS in my right arm. Over the next 4 years it spread throughout my body, took my independence, functionality, mobility, and career path. My CRPS is full-body now, I’ve been diagnosed with both type 1 & 2. It’s complicated by a rare genetic syndrome called Triple X syndrome (I have 3 X chromosomes), which causes my muscles, ligaments, and tendons to move more easily than they should. As a result, it’s really easy for me to sustain strains and sprains, which feeds into the CRPS pain loop. It took 5 years to get a CRPS diagnosis, and by then it was too far progressed for doctors to help me. By then, most days my pain was too severe for me to be active or maintain a job. In an effort to regain some of my functionality, I looked into a service dog for mobility assistance. To my disappointment, I couldn’t find trainers who helped people with CRPS. I decided to take my background in horse training and work with a local dog trainer who showed me how to use that knowledge to train a service dog myself. It changed my life and my outlook for my future with CRPS. I trained Robbie to prevent pain flare ups by doing activities we knew triggered pain flares, like helping with laundry and navigating doors, respond during pain flares, and help me recover after flares or on general bad pain days. Robbie opened and closed doors, braced to help me stand up, got me off the floor, helped me get dressed, brought firewood into the house in winter, prevented falls, helped me get in/out of the shower safely, found help, guided me to people or places, provided forward momentum assistance, retrieved various items for me, stabilized my body temperature during shock flares, and more. With his daily assistance, my pain stabilized, and was under control for the first time. He gave me what doctors couldn’t. Now, I’m the owner & trainer for Disabled Advantage Dog Training & Consulting, LLC. It’s an online dog training and coaching business for people with CRPS needing a service dog’s assistance, needing help training a pet dog, or needing to learn more about navigating life with CRPS and/or service dogs. I’m currently training my 2nd service dog to assist in the day-to-day management of my CRPS. He’ll learn many of the same tasks my 1st did, and a few new ones as I’ve learned more about my needs. When I’m not working on my business, I enjoy taking walks with my family, photographing nature and horses, reading books, cooking, and writing on my blog. Follow Disabled Advantage on social media to learn more about my story and crps service dogs.

You can email me at CRPSServiceDog@gmail.com or reach out through social media

Disabled Advantage Social Media links: https://linktr.ee/DADogTraining

Website DADogTraining.weebly.com

My Personal CRPS Journey crpsservicedog.weebly.com