April 20th, 2024
It lives. It burns.
Waves of fire course through my veins, radiating from my hip and igniting my leg in relentless agony. My primary arm aches and hangs inches below the other as the muscles begin to atrophy. I sweat through my clothes overnight and woke up unable to forget my reality as my fiancé helps me out of bed, which is now the downstairs couch, and helps me to the bathroom. Without him this journey would be insurmountable.
Today I was lucky enough to have been toward the end of a steroid treatment which means I am better than I was 3 days ago. Oh, and I got a jury summons. dum dum
This is not an unusually dreadful day; this is Complex Regional Pain Syndrome (CRPS), a constant assault on both my body and mind. Living with CRPS feels like a never-ending battle, one where the healthcare system often seems like an indifferent bystander, leaving me to fight for both my physical and mental survival.
More Than Just Pain
CRPS, the "suicide disease," is not just about the excruciating pain caused by nerve damage, inflammation, and a haywire nervous system (National Institute of Neurological Disorders and Stroke, 2022). It is the full-body takeover – the burning, the swelling, the skin so sensitive that even air hurts (Burning Nights CRPS, n.d.). It is the loss of function, the stolen ability to drive, dance, or even occasionally, comfortably hold hands with a loved one.
Severity, Stress, and the Shattered Mind
The McGill Pain Index reveals that CRPS pain can rival that of amputation and childbirth with a rating between 42-46 out of 50 (de Williams et al., 2011). Living in this state of constant agony takes a devastating toll. Anxiety skyrockets, fueled by the fear of the next flare-up and the overwhelming stress of navigating a dismissive healthcare system (RSDSA, n.d.). Concentration shatters, and basic cognitive tasks can feel as difficult as climbing Everest. The simplest text message can be mentally exhausting.
The cold, well, burning - hard facts.
Complex Regional Pain Syndrome (CRPS), classified as an orphan disease with under 200,000 cases in the US, has a complex history with over twenty-five prior medical names (RSDSA). Despite its devastating impact, CRPS receives less than 2 percent of medical research funding (RSDSA).
Medical history reviews reveal individuals who develop CRPS are more likely to experience migraines, menstrual-related problems, neuropathies, and asthma than those without (RSDSA). An RSDSA/Johns Hopkins study found CRPS severely disrupts employment (62% disability rate), sleep (96%), mobility (86%), and self-care (57%), and that symptom remission and relapse are common (RSDSA).
A body betrayed.
While research identifies many common symptoms of CRPS like burning and stabbing, significant gaps remain in our understanding. With a low prevalence and the misconception that the latest documented case occurred in 1994, crucial research funding is lacking. This lack of knowledge spills over to patient experiences – symptoms I endure are often difficult to trace online, leaving me adrift in a sea of unknowns.
Frustrated by unanswered questions and a constellation of seemingly unrelated health problems, I began suspecting an autoimmune connection in 2016. This self-diagnosis, though ultimately incomplete, stemmed from the desperate need to understand the relentless assault on my body.
But wait, there’s more.
I wish I could say this is a recent struggle. I believe my journey with CRPS began long before a diagnosis. I had spinal meningitis at 7-8 years old which could be a starting point.
Those awkward teenage years, not just about acne.
Or there could be that time I dislocated my shoulder in high-school and thought I did the Braveheart thing and thought I fixed it.
However, as I recall complaining about pain for 9 months to my former NFL player father, (but still I'm sure wanting to come off tough,) he took me to a chiropractor and then a doctor would later confirm I spent those months carrying a backpack filled with high-school textbooks every school day on an untreated, separated shoulder.
My senior year of high school, in the tumultuous year of all things Y2K, I had three wisdom teeth pulled with local anesthetic and my dad forgot to pick me up. My Mom was stuck with a home day care, and I had to walk home.
Single-Mom Probs. Now with Extra Ouch!
Between 2009, when I finally divorced my CPA ex, and 2014, I was involved in four car accidents – none my fault. Two totaled vehicles, multiple untreated injuries, and not a dime in compensation thanks to insurance battles and his skillful avoidance of any responsibility. Apparently, dodging child support qualifies as an advanced tax strategy.
In 2019, I tore my meniscus. Even with great insurance, months of delays and red tape preceded any treatment. No surgery until December, and through it all, I trudged on with my office-to-office sales job, hobbling in and out of my car like a bad action movie.
For longer than the Star Wars Saga, no one in the medical industry took my intense, and at times debilitating pain seriously.
With every car accident when it seemed it was taking me forever to heal - it was! I was not crazy!
Every severe injury that felt more severe than it should, but then doctor after doctor said they were not – well, they were.
Every anxiety or panic attack that felt inexplicably worse than believed - was.
These worst moments of my life, these tear-filled moments where I was overcome with guilt and shame about my own pain that now I thought I clearly shouldn't have, these moments of friends, family, and coworkers inability to understand what I was going through which all made every pain so much worse – In those moments, I was handed a suggestion or anti-depressants and told to walk it off.
In those moments I had to work injured, act fine around people who would tease me if I complained about pain. I had to cry alone, yell alone, and wonder, “Why me,” alone.
In pain. In shame.
Alone.
In these times of overwhelming pain and isolation and not to mention just being fucking terrified and confused - sometimes, in all those moments, including where the pain made me want to die, I would get brave enough and desperate enough to seek help only be disappointed with you guessed it, sometimes not even ibuprofen.
And believe me, the fun does not stop here. With each dismissed injury, each "toughen up" comment, and each futile pill bottle, CRPS tightened its grip. That history of medical gaslighting has damaged my trust and my body beyond measure. How could it not?
Betrayal
The jury duty incident was the breaking point. Even with a diagnosis, the fight continues.
As instructed, I messaged my doctor through their high-tech portal requesting a note. I received a call a day later and she let me know it was ready. I told her I was unable to drive and asked if she was able to upload it in the portal, as they had four referrals, and two other letters. I heard giggling in the background as she denied my request and said, “It has to picked up in person ma’am. By YOU.” Phone drop.
An hour later I processed and realized it would get here faster in the mail than I could get a ride there. My fiancé is a night nurse and we already have so much going on when he is awake, I wondered how someone could be so cold. I called back and after asking if it could be mailed to me instead the girl said she would ask the manager and unclicked the hold button saying no before I had exhaled. More laughter.
The laughter on the other end of the phone when I asked for a simple note without an in-person visit echoed the mockery I have endured for decades. The struggle for my pain and suffering to believed and to be treated with genuine care by the people who went to school to do just that, leaves me battling rage and despair.
The Fight for Body AND Mind
CRPS has stolen current and perhaps future dreams of travel and memory-making with family and friends, of FINALLY having a school career the way I envisioned and deserved, the vision of my career after completion, and sometimes, even the hope for a pain-free tomorrow.
But, beneath the fire, a defiance grows. I encounter some well-meaning doctors, but they often do not grasp the full devastation of CRPS. "I'm sure you can imagine," I want to say, "how fighting for normalcy while your body betrays you makes trust a precious commodity."
Living in this state of constant agony takes a devastating toll. Anxiety skyrockets, fueled by the fear of the next flare-up and the overwhelming stress of navigating a dismissive at best healthcare system.
This isn't just emotional distress – studies show that stress and anxiety directly worsen CRPS pain (RSDSA, n.d.)." According to Sciencedirect.com: a study found that among people with CRPS females and those who were more anxious, disabled, or had greater pain at baseline had worse outcomes over 8 years than those who were less anxious, disabled, or experienced less pain. Vergara-Martínez et al. (2023).
Eye of the Storm.
I have not gotten anyone in the local medical field to take this condition seriously from the moment the team of Neurosurgeons diagnosed me and left me in that room for a breath of a moment feeling seen.
For the briefest of moments, I inhaled peace and had an answer and someone that did not think I was crazy.
Someone that did not laugh in my face and tell me to “exercise more,” “eat better,” “take anti-depressants” or “just give it time.”
For those few precious moments, I did not have someone telling me I probably have “Some frustrating sciatica and a little frozen shoulder going on,” or I “need to get into that PT we referred you to.”
Isn’t it Ironic?
My childhood echoes with mantras like “Blood makes the grass grow” and “Never let them see you cry.” Growing up, I was often told I had a super high tolerance for pain, and I guess I did.
My sisters and I so desperately wanted to make our athlete father proud that we endured and hid hurts and pains, and I did it so long, my body decided it had enough.
Sounds like Sciatica.
Sciatica is painful. I should know, I had that too in 2013, or did I? Anyway, this is not that. When I was curled in the fetal position on the bathroom floor wishing for death to take me from these fires and stabs- well, sciatica did not make me do that.
When I found myself sobbing to Jesus asking for forgiveness for whatever I had done and words of pleading and bargaining were escaping from my lips like I was speaking in tongues, nope. Not sciatica.
When it feels like someone has implanted that sharp side of Velcro under my skin and scrapes and scratches when it’s fairing up (or sometimes when it’s not), or even when I stepped outside the other day and the cold rainy wind hit me and I almost passed out because my whole body couldn’t take it. Nope, not frozen shoulder either.
If I sound pissed, I am. Wouldn’t you be?
My body vibrates with pain and fire without control. My mind is in a battle of wits trying to avoid letting this consume me, but unable to think about anything else out of pain and fear of the inevitable if untreated outcome. If my care thus far is any indication of how my pain is being managed, it should be.
I am currently rationing and cutting back my pain meds every day thereby living in a constant slightly lesser state of pain, because I have run out of meds before and had difficulty getting them refilled, and I do not think I have to tell you what that is like. This is not recommended for this- or any - condition, but I feel helpless, afraid, and desperate.
Now what?
Tomorrow will have its own set of challenges which will likely include seeking help from Stanford Medical or Mayo Clinic as the options in this area are worse than limited and reaching out to a Patient Advocacy Group.
As well as trying to catch up on the schoolwork that will not stop because often, I cannot type for long – or like I used to which for someone who loves writing, is devastating. Sometimes, I forget words it seems, as they are leaving my brain.
Tomorrow I will be a mom, a fiancé, a hobbling gardener, a kind-hearted person, and an ALLY who loves big and does not understand why this is happening. I will smile 80% of the time I feel like crying. I will cry 100% more than I want to.
I will have to ask for help with basic tasks like putting on shoes and showering and feel like less of a person because of it. I am sure I will burst into tears probably over a dozen times before the day is over from pain, frustration, and exhaustion.
But the day will end.
A fiery new day will come with fresh air and fresh hell special for me.
Our healthcare system is failing those that depend on it the most and overrun and poorly staffed hospitals with OVERWORKED and UNDER PAID nurses and staff while the CEOs buy homes in Monterey and Carmel does not help. Erik Galicia's Fresno Bee article explores the controversy surrounding the compensation of Valley Children's Hospital's CEO, raising questions about the ethics of high nonprofit executive salaries. This medical practice of desensitization, medicate not cure, (sometimes not even that, am I right?) and for-profit healthcare is destroying lives.
My experience is sadly far from unique. In the heartbreaking documentary "Take Care of Maya," we see a similar pattern where a mother advocating for her chronically ill child and is wrongly labeled abusive, leading to devastating consequences (Chen & Rodriguez, 2023).
Yet, I will not simply survive. I will address the mental cost of CRPS, seeking therapies to quell anxiety and build resilience (RSDSA, n.d.). I will advocate for myself, demanding a system that recognizes the full complexity of this disease. Through it all, I will build a life worth living, fueled by both defiance and the embers of hope.
“Look what you made me do.” – Taylor Swift
Sometimes, not even ibuprofen can dull the pain of a system that underestimates chronic pain and its invisible mental costs. I demand to be heard, to be treated as human by the same people who took an oath to do so. After all, what would Taylor do?
This fire will not define me, it will just fuel me. Sure, the steroids might give a temporary boost, but the real power is mine. This is not just about my pain, it is about a system failing countless others. It is time to demand better, to fight for change. Like a phoenix with an unyielding spirit, I will rise, tougher than ever, with these now sore fingers, ready to carve out a future shaped by both strength and defiance.
Jocelyn Fox Author, Sometimes not even 800mg
Works Cited
● Burning Nights CRPS. (n.d.). CRPS information. https://www.burningnightscrps.org/crps/crps-information/
● de Williams, A. C., et al. (2011). Assessment of pain in complex regional pain syndrome (CRPS). Pain 152(6): 1266-73. https://doi.org/10.1016/j.pain.2010.12.021
● National Institute of Neurological Disorders and Stroke. (2022). Complex regional pain syndrome fact sheet.https://www.ninds.nih.gov/health-information/disorders/complex-regional-pain-syndrome
● RSDSA. (n.d.). Advocacy. https://rsds.org/advocacy/
● Vergara-Martínez, Francisco Javier, et al. "Baseline Characteristics Predict Long-Term Outcomes in Complex Regional Pain Syndrome: An 8-Year Follow-Up Study." Pain 164.8 (2023): 1672-1680. Web.
● RSDSA. "Living with CRPS: Definition of CRPS." RSDSA, https://rsds.org/living-with-crps/definition-of-crps/.
● Galicia, Erik. "Is Valley Children's $5.1 Million CEO Pay Too High for a Nonprofit? See the Comparisons." The Fresno Bee, 1 April 2024, https://www.fresnobee.com/news/local/article287006685.html.
● Chen, Daphne, and Nicole Rodriguez, directors. Take Care of Maya. Netflix, 2023.
My beautiful friend , my adopted daughter/sister, you have floored me once again with your determination and grit while fighting this… I am in awe of you, and also have a hurting heart for all that you are enduring… but if there is one thing I know- it is that you will be the Phoenix that rises above and conquers all.. I love you so much!!! And will fight with you if I must .. they better watch out, a fired up J-Fox is not to be messed with!!!