I’ve spent quite some time over the years attempting to raise awareness for Complex Regional Pain Syndrome. Ever since a bad day at work changed the course of my existence. The Buddha taught that existence is suffering, and that the root cause of suffering is our inability to accept life exactly as it comes to us. Some of us inevitably suffer more than others, but suffering is a part of life none the less.
Also known as “The Suicide Disease”, CRPS is a chronic and progressive neurological condition that results in debilitating pain and wide-spread dysfunction. It starts in one area of the body after an injury, but in more than 70% of cases, it spreads to other areas according to research.
Maleki J, LeBel AA, Bennett GJ, Schwartzman RJ. Patterns of spread in complex regional pain syndrome, type I (reflex sympathetic dystrophy). Pain. 2000;88(3):259-266. doi:10.1016/S0304-3959(00)00332-8
CRPS is ranked as the most painful form of chronic pain that exists today by the McGill Pain Index. Since the day I was diagnosed, it has felt like a reality that I was unable to accept. There was a lot that happened during that time and prior to my injury, which contributed to the battle that I would inevitably face. It is very bizarre now to look on as an outside observer and see what has become of my life. Most days I feel like I am not doing enough, or that I am failing, but that could just be the CRPS and C-PTSD talking.
Because the truth is… I honestly believe I’m doing my best.
Living with the long-term effects of CRPS can seem impossible at times, because every stressor has the ability to wreak havoc on your entire life… This is partially due to a phenomenon that was termed “The Amygdala Hijack” by Daniel Goleman in his 1996 book “Emotional Intelligence: Why It Can Matter More Than IQ”.
An amygdala hijack is an emotional overreaction to stress that activates the fight-or-flight response and disables rational, reasoned responses. It occurs when any strong emotion, such as anger, fear, anxiety, or extreme excitement, impairs the prefrontal cortex, the part of the brain in the frontal lobe that regulates rational thought. The amygdala perceives a threat and triggers a fight-or-flight response before the cortical centers can fully assess the situation, essentially "hijacking" the rational response process. An amygdala hijack can happen to anyone and is usually triggered by a stressful situation, causing the amygdala to disable the frontal lobes and take control of emotional responses.
The result of an amygdala hijack with CRPS is a hypervigilant, hyperarousal, Fight-or-Flight Stress Response that can produce symptoms as real and prevalent as that of a heart attack while being burned alive. The trigger can be anything, and with CRPS… Sometimes the demon takes full control.
It is not widely known which factors cause CRPS and which result from the ongoing painful disease, but there is a strong correlation between CRPS and PTSD. There is a concept that the effects of long-term negative emotions can manifest as sensory dominant stress in the body. Basically, that stress, whether brought on by mental, emotional, or physical trauma (like a broken arm), will always produce a physiological response in the body. Over time, if left unchecked, this can manifest in some pretty scary ways.
I grew up in a fairly dysfunctional home environment. The kind of environment where there is a story that is told about you to others that doesn’t reflect what actually happened. The type of broken home where happy memories are shrouded by screaming voices, harsh words, violence, and faces contorted by rage. I have never publicly talked about it because of the potential ramifications…
Most of my adult life I struggled with the effects of childhood trauma, after being told for decades that I didn’t remember the events correctly. A situation that is detrimental to a young developing mind. It causes you to question everything...
It wasn’t until I pulled the court records for myself that I could begin to trust my own reasoning. I did remember those things! They really happened... As I started to process and work through the situations in my mind, attempting to forgive, and ultimately to heal; I have been constantly reminded that others had it worse than me… And while that may be very true… At the end of the day, it was me who had to figure out how to live in my own head.
Life can be so very difficult... We may be trying our level best, and it feels like it is just never good enough... If that is where you're at, just know that you are not alone.
Despite a rough development with a heavy dose of hypervigilance, I made a career in the medical field and avoided becoming a complete statistic. I began volunteering as a Firefighter / EMT in 2005 and took a job with a local hospital system working in the ER. It was a good opportunity for me, and it offered me a chance at a career that I could advance in. The hospital was like its own microcosm. I got lost in the world of allopathic medicine, taking every opportunity that presented itself, and there was never any shortage of opportunities at hand.
By the time that I attended my Paramedic program, I had spent 5 years working overtime in the ER, and I had been cross trained for work in the Intensive Care Unit, Post-Coronary Care Unit, and the Laboratory. I so relished the opportunity to grow within my field, that I did not realize how the inability to process past traumas would compound with the difficult situations that I would have to face as an EMT and eventually as a Paramedic. That's the thing about chronic depression and trauma... You usually can't tell until it's too late, because the mask we learn to wear is very convincing. Even to those who know us best.
In 2015, things came to a head. I had taken a position with a Fire Department that seemed very promising. With a Paramedic license and many years of experience in the service, I was able to easily gain employment with the department. It was basically a walk-on opportunity.
Sure, I still had to test… But I had the job in a snap.
Well… You know what they say, “If it seems too good to be true, it probably is.” And it was...
I have never publicly talked about the level of hazing that I experienced at the department, because I have never wanted to deal with the backlash of opening my mouth. But I know now that others are struggling with similar situations, and I cannot stay silent any longer. Within a couple of weeks of being hired, myself and another experienced new-hire medic were having conversations about leaving the department while checking off trucks. It was truly an unfortunate situation; one which put me in a position of wondering if these guys would really have my back if something happened. The situation seemed untenable at best.
I was looking for options, but trying to do my best to fulfill what was required of me. Being extremely worn out from all the physical training we were having to do; I began to realize that certain people really got a kick out of hazing rookies. The word seems so dirty, like you are violating some unspoken code by even mentioning it, but that is exactly what it was. We were still running calls during this time; and as a new hire Paramedic, if a medical call came in on your shift, it was your call. Period. Long story short, many of my 24hr periods off between my shifts were spent writing reports from the day and night before, only to catch a little sleep and come back the next day to do it again. I found myself wondering what the hell possessed me to come and work at such a place. I was in a terrible situation, and it wasn’t about to get any better.
When my right shoulder finally let loose, I was pulling myself through a gable and my air pack was hung up on a truss. As I tried to work my way through the space I felt three distinct pops in my shoulder, followed by instant searing pain. It was fire and it was electricity, from the shoulder to my hand. When I got out, I couldn’t lift my arm. I remember an Officer getting in my face and yelling, “Are you hurt or are you injured?” I remember asking him what the difference was, and I was told to go and push a broom until I was finally taken by a Battalion Chief and several Members of the department and “coached” on how I was to fill out the paperwork for Worker’s Compensation.
This was in 2015, and I have never actually told this story because, frankly I have been terrified to publicly talk about it. But at some point, just like fighting your first structure fire, sometimes you must face your fears and put your own emotions aside so that you can help others. I really hope that telling this story will help someone. Otherwise, I feel like I am just drawing a giant bullseye on my back for nothing.
My situation got extremely complicated from here. I was not on the best terms with the other members of the department already, and being on light duty with a diagnosis of CRPS did not help matters any. I was accused of all manner of deviant behavior. The consensus at one point was that I had tied a tourniquet around my arm to produce swelling and discoloration.
Temperature changes are exceedingly difficult with CRPS. For that matter, so is vibration, noise, and just about everything else. I was told at one point that I had to wash all the trucks at Station 1 by hand in a snowstorm. At another point, I was told that I was to take the side-by-side and map out a large area for the Planning and Zoning Department. I was constantly reminded that I was on thin ice and that insubordination would not be tolerated. What do you do in a situation like that? I had bought a house… I had a mortgage… I was in tremendous pain, but I couldn’t lose this job… My life quickly became a living hell. The stress and pain became a vicious cycle, and the people who were supposed to be advocating for me began to reveal that they were actually working in opposition.
Some days the hand would get bight red and feel like I had just set it on top of a hot stove... Other days it would turn a dusky purple and grey, and it would feel like I had ice and broken glass under the skin...
I understand that I could easily be misconstrued as a disgruntled former employee who is bitter about losing a court case. However, that is not the case. I simply want people who have never had to live through something like this, to recognize that it can happen to anyone; and it does happen to people, almost every day…
I had multiple doctors who agreed on a diagnosis, and a nurse case manager who was exceedingly unpleasant. She refused me timely refills on pain medication and Lyrica. I would get the call to pick up my prescriptions from the pharmacy, only to be told when I arrived that the refills were not approved. This was difficult to begin with, because I had to drive myself since my wife was working to support us while I couldn’t. I was forced to withdraw from the medications every time the refills weren’t approved, and I couldn’t afford them out of pocket. This back-and-forth situation went on for what seemed like an eternity as I was sent from one doctor to another with no clear path forward.
TALK ABOUT TERRIFYING!!!
Eventually, a doctor would put an end to the cycle. He stated that the diagnosis of CRPS due to a shoulder injury was actually a misdiagnosis. Evidently 4 different doctors had misdiagnosed me, but this guy had the “most knowledge”… He diagnosed me with Atypical Reynaud’s Syndrome because I was honest about the fact that I used to smoke cigarettes. When I asked if he had ever seen Reynaud’s present in one arm, he replied, “Well, it’s an atypical presentation.” When I asked if Reynaud’s would explain the amount of pain that I was experiencing he replied, “I’m not convinced that you have pain.” He told me that Lyrica wasn't a good fit for me since it wasn't CRPS and he gave me Tramadol. FML I had to go through it again!
When I got a copy of the notes for the visit, I found a history and full set of “Normal” vital signs which were never taken. His records indicated that the swelling, mottling, and dystonia that I was experiencing were not present at the time of his examination. My wife sobbed as we left the doctor’s office and began our 3hr drive home. It was my word against his. This was the doctor who would eventually testify against me and get my case thrown out. I was sure that my life was over...
It is a strange thing to have to be the one to prove that you are sick...
We ended up seeing a primary care doctor and 2 more specialists who would agree on a diagnosis of CRPS after the fact, but the case was already lost. At this point, it was only about getting effective treatment… No matter what.
I began having a recurring dream that I put my 45 caliber in my mouth and blew my brains out in the back yard. It was incredibly vivid. Each time when the gun would send the back half of my skull and its contents across the yard, I would see myself from a top-down view, like I had left my body. Then I would see my wife running out to grab me. She would hold my lifeless body, screaming, sobbing, and shaking me. Those ragged sobbing cries in the deepest depths of my nightmare are the reason that I am here today. Most people would probably think that I am unstable, and not to be trusted with so much as a kitchen knife, but if you have ever lived with CRPS, you can relate exactly to what I am talking about right now.
Ask anyone with CRPS, and they will tell you a similar story. You become a pariah, an outcast…
It is so interesting…. They say you can’t have good and bad days with CRPS. They tell you that if you don’t find a way to keep using the affected limb, you’ll get worse. Then they punish you for trying to do what they told you to do.
When I look at my court records next to my medical records, the documents tell a strikingly different story. The hard truth is that I was the one who had to figure out how to go on living without the help of the system. It would be dishonest of me to hide the fact that I considered taking my own life, and the important thing to recognize is that doesn’t make me mentally unstable. I honestly believe that anyone in my situation would struggle with the same thoughts, and if you are struggling with thoughts of suicide today as you are reading this; I just want you to know that you are important, and your life matters. So don't give up! There's no telling what you could be used for a year from now... Or 10 years from now....
I began to self-medicate with Cannabis when I couldn’t get my medications refilled. Quite frankly, it helped more than the pills. Lyrica put me in a state where I couldn’t even communicate. I knew what I wanted to say, but I couldn’t make the words come out of my mouth in a coherent sentence. With aphasia (sometimes called dysphasia), a person may be unable to comprehend or unable to formulate language because of damage to specific brain regions. I would only discover later that Lyrica and Gabapentin are a death sentence for developing new synapses in the brain. According to a Stanford Medical paper, there are long-term effects of brain damage, withdrawal, and permanent side effects associated with the medication that they had me on extremely high doses of. As of writing this, I discovered that there is a class action lawsuit against the drug company that makes Lyrica because of the severity of the long-term side effects.
I could go on… and on… and on… But this is not intended to be a rant. I am not out for blood. I don’t have an effigy erected in my closet with pentagrams, candles, and voodoo dolls. But that is not to say that I wasn’t seriously damaged by the whole ordeal. To be honest, I feel lucky to be alive and fully functional most days. The experience that nearly cost me my life has completely re-defined my purpose for living.
I have lost so many friends with CRPS to suicide over the years that I feel an unrelenting urge to let the world to know what it is that we actually go through! But more than that, I want the stigma surrounding the condition to change! I want doctors to treat patients with CRPS like more than sub-human individuals! I desperately want people with CRPS to know that there are options! Options that are not barbaric, and don’t require the removal of body parts!
After things went south with the work comp case, I had an opportunity to begin working with a Functional Neuromuscular Stimulator in a neurologically based chiropractor’s office. It was an interesting progression to say the least. The technology was amazing! While incredibly painful, I was able to shock myself with the device while performing exercise. This would keep the pain at bay for a time, and then I would get to go through the process all over again.
Things with the job seemed positive at first. I was getting the opportunity to help a lot of people, and I didn’t feel alone anymore, because I was making a lot of friends who could relate exactly to what I was going through. The situation quickly deteriorated though. Although I was brought in as an Independent Contractor acting as a Consultant, I was treated as an employee everywhere but on paper. When I tried to voice my concerns about multiple issues, it became clear that the best thing for me to do was to leave the position.
I ended up walking away and waiting out a non-compete with the technology company so that I could maintain my integrity and distance myself from the doctor who was now trying to issue me a gag order. I walked away from severance pay and wages that were rightfully owed to me so that I could maintain my ability to tell my story. Even though I never signed that paper, it is a monkey that has never completely come off my back.
I ended up working with all the major technologies in the space, until I finally found a home with the company I am now partnered with as a Clinical Advisor to the Research and Development Board. The team is as wonderful as the technology. The device is not painful like others were, and I see that the individuals at the company have a genuine desire to wake up every day and make a difference in the world. It has been like a breath of fresh air!
I have been working with this type of functional stimulation consistently now since 2016. In that time I have used the technology both on myself and on others, and the effects have been nothing short of astounding. I have been in remission from CRPS since 02/02/2020; and while I still enjoy some “features” with the condition, I count my blessings every day that I am able to maintain a fairly normal quality of life.
My wife and I have opened a training center in Springfield, Missouri where we are working diligently to educate providers on the technology and share our story about how Interactive Neuromuscular Stimulation has changed my life, as well as the lives of so many others with CRPS and other conditions. We have been blessed to create a space where providers and patients can gather together and build rapport as knowledge and understanding of this terrible condition are increased on both sides of the aisle.
This all has seemed very overwhelming, and incredibly daunting at times, but Nikki Rowe has a quote that has always stuck with me. “Keep your expectations high, not because you are better than anyone else, but because you have experienced enough pain that you realize you won’t settle anymore.”
And that’s what I’m trying to do…
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