Real Words From Real CRPS Patients

I started as a caregiver for my boyfriend who suffers from CRPS that has spread throughout his body. A year and 3 months in, I went from advocate, supporter, and caregiver to diagnosed CRPS patient.

Living with neurodiversity and severe mental illness has been a lifelong journey for me. A day without pain is not something I have ever known. Having multiple illnesses that involve having extremely painful hypersensitivities, both mentally and physically, to things people can't understand or even fathom costs you relatability. When people can no longer relate to you, they no longer what to be a part of your life. The barrier has always been there for me. Isolation forces you to sit in a dark place where feelings of not being enough and never doing anything right become the narrative you believe and tell yourself. A place so dark no one can see you and you feel unworthy of love.

The day I got diagnosed with CRPS was the day I realized I would always exhausted, I would always be on fire, and I would always reach a point where I would want it all to just end. My level of self-control has to be at max power 24/7. I am constantly navigating my pre-existing 3rd degree emotional burns in the form of ultra rapid cycling, disassociation, and fear of the unknown. My physical pain is masked by my intolerable emotional pain. The isolating nature of the beast are the extreme symptoms. You come off as "too much" or "not enough" - there's no gray of understanding. When others can't comprehend the level of pain you feel, it's hard to have compassion. Choosing quality over quantity can make us look selfish and full of excuses - but the simple reality is - having limited tolerance, functionality, and high pain means I have to wisely choose where I put what little energy I do have.

While this has been very defeating at times, I try to stay positive. My goal is to let others know that they aren't alone in what they are facing. Feeling alone while in a scary situation can be a traumatic experience, I aim to give more people a place to turn when they feel that have no where to go.

I am a 40 y/o CRPS Warrior, wife, and mama of two amazingly wild 8 y/o twin boys. I am sharing the following, first, to give a brief description on my medical training and knowledge in the medical field and healthcare system prior to my CRPS diagnosis.

I started taking healthcare courses from 1998 to 2001. I became a CNA at 17. Later, I attained my Asoociates Degree in Science of Nursing - RN in 2009. I worked in all settings; specializing in ER, Pediatrics, & Pediatric ER medicine.

Fast forward from 2020 to present day. A dimensional shift is pretty much the only way I can describe the Healthcare system today. A very sad, dysfunctional, broken, and indoctrinated medical system that has let down, mistreated, ignored, and gaslit patients. This is due to medicine and (Big Pharma) not treating patients the way they should be treated, and our tried and trusted insurance system that is in bed with the docs, and Big P. We are no longer taken seriously. Doctors no longer try to get to the root of the problem. They no longer care, as they just prescribe medications, get perks from big pharma, and then keep patients sick from the medications they prescribe. Which causes the need for more medications to treat all of the side effects these toxic drugs cause.

I was diagnosed with CRPS 8 months after an "outpatient, routine, exploratory abdominal surgery" in Jan 2020, for possible endometriosis. My life, my world blew up as I knew it. If the young, surgery hungry doc that performed my surgery would have looked at my MRI scans, he would have seen that I had adenomyosis and could have concluded that my symptoms were due to that vs causing CRPS for an exploratory surgery for endometriosis.

There is more back story to having CRPS, years prior from other surgeries, but it went undiagnosed. I can leave out those details because, the point is, I was diagnosed with CRPS. The way I was diagnosed, was a heartless, uncompassionate doctors visit. I was trying to figure out all the 'whys'. Why I was in excruciating pain, why I could not walk and function as I once did, why I could not care for my kids and family, why I was exhausted beyond recognition, why I could not eat, sleep, think. Why I could no longer be the active, vivacious women I once was. A gym rat, a mom that could pick up and hold her babies. Why I was having to explain to my almost 2 year old boys (when CRPS actually started but kept getting dismissed by the doctors). Why mommy couldn't pick them up anymore, or pick them up to nurse them and daddy had to help. Why was this happening? Why does each doctor I see that is clueless - just keep referring me from one doctor to the next? (Big P and getting insurance to pay for all of these "I dunno, go here" visits. My doctor, a neurologist that I worked with, handed me a business card with CRPS written on the back of it, and he told me to Google it, maybe follow up with pain medicine, and gave me a horrible prescription for nerve pain medications along with steroids that causes more crippling & debilitating side effects than are worth taking.

The ironic thing is, we, healthcare personnel, are all too familiar with patients that Google symptoms. We tell them to never Google their symptoms. Yet, this doctor could not take a moment to sit with me and explain this horrific, life altering disease to me. He handed me a business card and walked out. I was bawling in pain, fear, confusion and devastation. 

I got to a very dark place. As most warriors are in, or get to. I will never forget that first year. Being bed/couch bound. Screaming in pain into the couch cushions/pillows when I was at my whits end. I remember blacking out at multiple times. This one time in particular, my boys ran up to the couch, my husband was asleep in the recliner behind me. I was literally screaming into the back of the couch cushions. My, then, 4 y/o sons were so concerned. During my screams,  I remember thinking, what the hell am I putting these poor boys through. I screamed one last time after contemplating that they would be better off without me. I had to make a change, on my own, without the doctors. I pushed myself up off the couch and said, no more. I WIĹL be here for my family, regardless of whether I need to take a lot of breaks, or be in a wheelchair,  or limit/cancel activities. The old me is gone and I had to let go of her. It didn't mean that the new, altered me couldn't have a life as well. 

Even though I have a medical education, CRPS was never taught in any of my schooling. After being diagnosed, I learned very quickly that it is not taught in medical school either. It is almost impossible to find a doctor that has taken a course, or specialized training in CRPS. Which makes this condition one of the worst, most dangerous diseases out there, as patients go for far too long without a diagnosis, without proper early treatment, with dismissed symptoms, medical gaslighting, inappropriate medication prescriptions just to 'appease' the steps they have to take to say they 'addressed the patients pain/symptoms' to the medical system, government or higher ups that control all of that. It is insane, barbaric, and inhumane how the medical system has failed CRPS Warriors! And, a lot more patients with other diagnosis' as well.

When I say it is dangerous, I will clarify by saying, CRPS is nicknamed the "suicide disease". By medical professionals lacking the education to properly diagnose patients early on, or at anytime; it is extremely dangerous. It can cause the patients to not get early access to treatment that may help put them in remission, only if caught and treated early. It can cause a patient to get so frustrated, and despaired with the doctors referring them from one doctor to the next, waiting for pre-authoritions, or approvals to see one doctor to the next, or wait for testing, or scans. Waiting for insurance pre-authorizations for the next doctor. Only to try and schedule an appt to find that they are months booked out. It is an ongoing, vicious cycle that haunts warriors. 

Warriors are already in the battle of their life with this complex condition, let alone trying to navigate the doctors and Healthcare system game. We often get so discouraged with no signs of help, relief, or end in sight. We break. We physically and mentally cannot handle all of this. And god forbid a warrior is on their own with no support system. Many warriors, end their own life as it is just too much. Too much pain, too much to handle with all that the doctors, insurance, and broken medical system puts them through. This is never ok or acceptable. 

Final words of advise from a healthcare worker and CRPS warrior: please educated yourselves, and other doctors. Take courses in CRPS, treatment options and pain management. Have compassion with patients presenting with unrelenting pain that is out of proportion from the original injury. Help patients with treatment options that are out of the usual prescribing medications and referring out. Be the doctor that helps us, not hurts us.