Forged in Fire: My Journey with Arachnoiditis and the Path to Truth
I was always different. As a child, my body bent and moved in ways that amazed people. I could fold my legs behind my head like a contortionist, but I never questioned why. It was just a party trick, a bit of fun. I didn’t realize then that my hypermobility was a clue—an early sign of a deeper, hidden truth about my body that would take decades to unravel.
I was also highly sensitive—my nervous system, my gut, my energy. As a child, I was often off school with a ‘bad stomach’ or fatigue that no one could explain. I was told I just had a ‘sensitive stomach’ and left to deal with it. Then, in my late teens, I started getting deep, red stretch marks across my skin. There was no weight gain, no reason for them, but I brushed it off. Another clue ignored.
The First Blow: A Crash That Changed Everything
In 2003, at the age of 18, I crashed my motorbike at 30mph. I should have walked away with nothing more than a few bruises, but something wasn’t right. The only official injury was a cracked wrist, yet I couldn’t physically walk down stairs or get up from the floor without help. Worse, I was leaking urine.
I went to my GP, hoping for answers. Instead, I was gaslit. Dismissed. Given cocodamol and sent on my way.
A year later, I began experiencing an excruciating pain in my mid-back. It was relentless, gnawing at me day and night. X-rays showed nothing but a slight scoliosis. “Nothing to worry about,” they said. But I knew better. I spent thousands trying to fix myself—functional exercises, chiropractors, osteopaths, acupuncture. Nothing worked. The only relief I found was rolling my back on a foam roller, a momentary pop that eased the pressure but never lasted.
Then my body began to shift. The left side of my back grew visibly larger as muscles compensated for an unseen force, and my right hip tightened to the point where I struggled to tie my shoelaces. I was deteriorating, and no one could tell me why.
The First Major Red Flag: Losing Control
One day, while driving to Monmouth, I lost all feeling down my right arm. Terrified, I went to my GP, who suspected multiple sclerosis (MS). A brain scan came back clear. “You’re fine,” they told me. But I wasn’t fine.
By this point, I could barely walk. I needed a wheelchair. I sat across from a neurologist, desperate for answers, and he told me my examination was ‘normal.’
I wasn’t normal. I was breaking down.
Seven years later, I would look back at those scans with newly trained eyes. I had self-taught myself neuroradiology, searching for the answers the medical system refused to give me. And there it was—the empty thecal sac sign at S1.
I had arachnoiditis all along.
The Private Battle for My Life
The next few years became a whirlwind of desperate attempts to regain control of my body. A bad disc in my neck was worsening, and after years of being dismissed by the NHS, I went private. I took out a massive loan on my house to pay for specialists. The financial strain was suffocating, but what choice did I have?
Surgery on my right arm helped restore some function, but recovery was slow. Meanwhile, my lymph nodes swelled, my gut deteriorated, and my blood pressure swung wildly due to POTS. The worst part? Twelve years on omeprazole, and no doctor had ever thought to check my stomach with an endoscopy. When I started bleeding rectally, I feared the worst—cancer. They dismissed it as ‘health anxiety.’
By sheer will, I clawed my way back to walking again. The biggest change? Getting off opioids.
The Final Betrayal: Steroid Injections and the Acceleration of Arachnoiditis
Between 2019 and 2021, I underwent a barrage of spinal injections—epidural steroids, nerve root blocks, facet joint injections. In total, I had over 15 procedures. They worked—at least, for a while. They got me back to work, kept me moving. The SI joint injection was the most successful of them all.
But now, I see the truth.
These very injections—the ones meant to heal me—accelerated my arachnoiditis.
At the time, I didn’t know I had Hypermobile Ehlers-Danlos Syndrome (hEDS), a genetic condition that made me prone to scarring and complications from spinal procedures. My body wasn’t just failing—it was being betrayed by the very treatments meant to help me.
By late 2024, my body was shutting down. My left eye reflex was failing, my pupil had shrunk, and the left side of my face was in agony. My entire left side—my arm, my leg, my nerves—was deteriorating.
In September 2024, I became dependent on a power chair. My gut had been ravaged by opioids, leading to severe gastrointestinal disease. My bloodwork was deranged, my FIT test was positive, and lesions had appeared in my rectum. I was now waiting for neoplastic cancer to be ruled out.
Then, in January 2025, I nearly died from dysautonomia.
The Turning Point: Biohacking, Low-Dose Naltrexone, and the Rebirth of The Honest Onion
I should have been broken. Defeated. Yet, against all odds, I bounced back.
The first game-changer? Low Dose Naltrexone (LDN). Opioids had been poisoning me, triggering allergies and mast cell activation due to my EDS. LDN changed everything.
The second? Biohacking.
With AI and genetic testing, I began dissecting my own biology, optimizing supplements based on data instead of guesswork. I did what the entire medical system failed to do—I figured out what my body needed. I became my own functional medicine practitioner.
A New Mission: Bringing Arachnoiditis Into the Light
Now, as I sit here writing this, I see the perfection in my journey.
Every moment of suffering has stripped away the layers of illusion, forging my soul in fire. My body may be damaged, but my spirit is unbreakable.
And now, I have a mission.
I will bring Arachnoiditis into the light.
Through my work with www.arachnoiditis.co.uk, I will fight for:
1. NICE Guidelines – So no one is left in the dark without a treatment plan.
2. Class Action Lawsuits – To hold pharmaceutical companies accountable for the damage they have caused.
3. Research into Adjuvants – To expose the hidden dangers of medical procedures.
4. Pre-Screening for Connective Tissue Disorders – To prevent people like me from being harmed.
5. Informed Surgical Procedures for EDS Patients – To stop the cycle of medical negligence.
I will not be silenced.
I will not back down.
And above all—I will survive.
For anyone suffering, feeling hopeless, or lost in the cracks of a broken system—I see you. There is always a way forward. You are never alone.
Life unfolds in utter perfection.
And my heart will go on.
🔥 The Honest Onion 🧅