A Decade in the Fire: My Journey with CRPS

I had issues with my right hand and arm before. It would curl up—like I was having a stroke—followed by about a week of pain and swelling. Movement tests, Nerve Conduction Studies, and CT scans showed nothing. Consequently, I was told it was "all in my head"—probably just stress. Because, apparently, stress makes your hand swell up like a balloon.

I eventually gave up investigating. I assumed it was a flaw in my makeup, much like the buzzing in my ears that doctors also dismissed. In retrospect, I should have pushed. Maybe I would not be here, in this state, today. My name is Pascal. I was diagnosed with Complex Regional Pain Syndrome (CRPS) 10 years ago, and this is my story.

It was December 2015, the "claw" hand had returned, but instead of fading after a week, it persisted. On the morning of my scheduled return to work after the December break, a disagreement with my wife spiked my adrenaline. The pain ratcheted up with every kilometer I drove. I detoured to my GP, who took one look and sent me straight to a hand orthopedist.

The orthopedist ruled out bone or muscle issues instantly. He admitted me to the hospital, warning that a battery of neurological tests lay ahead. While waiting for a bed in the reception, I collapsed. When I woke up in the ward, a nurse was attempting to insert a drip into my right hand—the very hand that was swollen to twice its normal size. It was a perfect metaphor for the lack of understanding I was about to face.

Everything came back clear until the Nerve Conduction Study. The ward still remembers that test; I screamed in such agony I likely traumatized the neighbors. Based on the exclusion of everything else, my neurologist diagnosed me with CRPS. His verdict was brutally honest: "There is little I can do for you."

My Occupational Therapist, a godsend who was part solution-architect and part psychologist, initially treated me for Dystonia. For a brief window, it worked. I adapted to work using dictation software. I thought I was winning.

Then came March. I collapsed at work from a pain spike so violent my body shut down. That blackout marked the end of my life as a healthy man.

The nine months that followed are a blur. My neurologist stepped up the medication until I was less human and more zombie. I slept, ate, and existed. My OT stopped trying to fix the hand and started teaching me to live without it. But my "Engineer" brain refused to atrophy. I survived by playing strategy games like Civilization and building complex LEGO Technic sets, training my clumsy fingers to handle gears in a world where everything else felt broken.

In October, my father died. Years prior, he had succumbed to grief after my brother’s death, fading into a shadow of himself, I realized the medication was doing the same to me. I was becoming a passenger in my own life.

I decided to take control. Slowly (and without official blessing), I peeled back the layers of sedation to find a balance between screaming pain and a comatose existence. To seal the deal, I did something irrational: I bought a VW Scirocco R. A hot hatch. It was aggressive, fast, and entirely impractical for a man with one working arm. But it reminded me that I wasn't dead yet.

My permanent disability claim was approved, settling my finances but reducing my income. I eventually had to sell the Scirocco, but by then, I had shifted my engineering focus to designing LEGO sets using CAD software. I learned the hard truth of chronic illness: the "Energy Economy." We don't start the day with a full battery. Most of our energy is burned silently, just managing the body. Five hours of productivity is a miracle.

When COVID-19 hit in 2020, the world slowed down to my pace. My wife lost her job, but we pivoted, starting a small e-commerce consulting business. I provided the architecture; she did the heavy lifting. We survived the pandemic, and in 2021, I even regained a spark of mobility—enough to use a screwdriver for short bursts.

Emboldened, I tried to rejoin the world, working Front of House at a friend’s restaurant on weekends. For a couple of seasons, it was my salvation. I wasn't "Pascal the Patient"; I was just a guy running the floor.

In 2023, the house of cards collapsed. A new pain began in my leg, mirroring my arm. Simultaneously, blood tests revealed Polycythemia (too many red blood cells) caused by severe Sleep Apnea. My Medical Aid refused to cover the CPAP machine required to fix it, a short-sighted decision I could write a dissertation on.

Worse, my trusted neurologist retired. His replacement admitted me for a week, did a Lumbar Puncture that left me with permanent back pain, and concluded—despite years of history—that the pain was "all in my head."

I fired him. A new neurologist has since restored sanity to my team, but the damage was done. The fire had jumped the firebreak.

The last year has been a war of attrition. My leg deteriorated until walking became a marathon. My father-in-law passed away, leaving my wife devastated. When we applied for a wheelchair to help me mobilize, the Medical Aid gave their standard answer: "No."

In August, I paid the price of my ongoing stress. I was admitted as "Code Red" with stroke-level blood pressure (220/160). I finally put my foot down and appointed my Specialist Physician as the "Project Manager" of my medical team. It was not negotiable.

We stabilized my BP and found sky-high Chromogranin A levels (a mystery currently requiring a PET scan). I also underwent nine nerve blocks that the Medical did not pay. The one in my right arm is holding, giving me back some hand function, but the leg blocks have already failed.

Recently, my GP revisited the "weight loss" conversation. This time, instead of just telling me to exercise through the agony, he prescribed Ozempic. "Let's try," he said. "You have nothing to lose."

I am writing this from the trenches, ten years in. My journey is far from over, but I have gathered some intelligence along the way:

1. The Volatility Rule: CRPS is dynamic. I can be fine now and incapacitated ten minutes from now.

2. The Energy Mandate: If I need to rest, I do so. Pushing through costs days, not hours. Energy management is key.

3. The Stress Multiplier: Emotional stress is physical pain; they are directly linked.

4. The Medication Reality: Medications wear out. The only one that hasn't is Oxycodone. I am careful with it, but I would rather be dependent than in screaming pain.

5. The United Front: I needed a core team of professionals under one roof. Disparate specialists are a liability.

6. The Bureaucratic War: Medical Aids are useless unless you face them dead-on.

7. The Expert Patient: I do not let myself be gaslit. I know my body better than my doctors do.

8. Vigilance: New pains should never be dismissed as "just CRPS."

This has been my last ten years. And tomorrow, I’ll wake up and handle whatever the eleventh year brings.

Never give up. Never surrender. We are CRPS warriors.