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Trigger Warning: Hey friends, heads up- this post gets real. We’re talking about falling down the stairs, chronic pain, CRPS, nerve injuries, medical trauma, dystonia (muscle spasms that don’t quit), mental health struggles (including suicidal thoughts), grief, and surgery recovery. It’s heavy stuff, so please take care of yourself while reading.
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How It Happened: The Fall
My story isn’t glamorous. I’ve joked that I gracelessly yeeted myself down the stairs in 2020. Funny, right? — Not so much.
Back then, M&M (the Moss Maiden of course) and I were heading downstairs (my bedroom is in the basement) when I stepped on a wet dish towel my grandmother had left on the stairs- something we’d all been warning her about for years. Towels, washcloths, laundry- whatever it was, it blended into the carpet, creating a hidden hazard.
Accidents happened- first with my mom, then with me.
RIP to my grandmother, who passed in 2023. I want to respect her memory- but that doesn’t excuse leaving a rag on the stairs that caused real harm. Accountability matters, even in death.
I fell, smacked into the wall at the landing, and crumpled at the bottom like discarded trash. Somewhere along the way, I heard an awful crunch… and then I started laughing. Pain triggers laughter before tears for me- a quirk of ADHD, autism, and maybe PTSD.
But once the shock wore off, the screaming began.
Within minutes, my foot had swollen five times its normal size. I couldn’t put pressure on it, move my toes, or even wear so much as a sock. M&M drove me to the ER during peak COVID-19 times, where I was told, “Good news! Nothing’s broken.” (The same nonsense I’d heard earlier this week.)
Crutches, an air cast, “just a sprain” diagnosis- done.
No one wanted to listen when I said I’d sprained ankles before. This wasn’t a sprain. It was worse. Instead, I was told I was just being dramatic, since my mother had died of cancer a few months earlier in March. Grief, they said, worked in strange ways.
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What Was Actually Wrong With My Foot
Here’s the doctor-speak translation in plain English:
- Nondisplaced intra-articular fracture of the medial cuboid bone: A small crack inside one of the tiny bones in the middle of my foot. It didn’t move out of place, but it caused extreme pain.
- Avulsion fracture along the lateral aspect of the cuboid bone: Part of the bone was pulled off where a ligament attaches. Ligaments hold bones together, so this made my foot very unstable.
- Partial-thickness tear of the anterior talofibular and calcaneofibular ligaments: Two major ligaments on the outside of my ankle were partially torn, meaning my ankle could no longer support weight properly or move normally.
Basically, I had multiple serious injuries that the ER missed- twice. Walking on them for nearly eight weeks made everything worse. My foot and ankle were screaming, but no one believed me.
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How CRPS Developed
Because I walked on these fractures and torn ligaments for almost eight weeks without proper treatment, my body reacted the way CRPS patients’ bodies often do- internal arson.
Complex Regional Pain Syndrome (CRPS) is a disorder of the nervous system where pain goes haywire. Nerves that carry pain signals to the brain become overactive, so the brain thinks something is seriously wrong even when it’s healed- or sometimes even worse than it actually is.
- Type 1 CRPS: Happens after an injury, but without confirmed nerve damage. This was me at first. My foot hurt constantly, even when nothing looked wrong externally.
- Type 2 CRPS (causalgia): Happens when a nerve is clearly damaged. My CRPS evolved into Type 2, meaning nerve injury added another layer of pain and dysfunction on top of everything else.
Symptoms include constant burning, tingling, buzzing, swelling, color changes in the skin, and dystonia- muscle spasms that twist my leg and body painfully. I go through dystonic episodes constantly, awake or asleep, sometimes screaming, sometimes silent.
That’s where Luna, the amazing Service Dingo, comes in. She’s trained in deep pressure therapy (DPT) to help when I can’t manage the spasms on my own. Heating pads and ice help too, but sometimes, we just have to wait it out. Those moments are the absolute fucking worst.
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Living With CRPS
CRPS is often called the “suicide disease”- and now I understand why. Not “metal.” Not “edgy.” Just hopelessness.
My leg buzzes constantly. Lightning strikes shoot from my toes to my knee, up my thigh, sometimes even into my back. Imagine your foot half asleep, and someone hits it with a bolt of lightning at random. That’s kind of how it feels.
Stand or walk more than five minutes? Purple or gray, swollen like a balloon. Finding shoes is a nightmare, so if you see me rocking sweater boots, Converse, or combat boots 365 days a year, know this: I’m not just a spooky, witchy weirdo. Combat boots and high tops stabilize my ankles- stabilization is something I need as someone whose body thinks collagen is merely a suggestion.
Dystonia doesn’t care if I’m awake or asleep- it twists my leg and body in unnatural, painful ways. I pace my energy using the spoon theory: each task drains a limited supply, like a faulty battery slowly running down. Showering, eating, cleaning- everything costs energy, and I never have enough to get everything done.
And you know what doesn’t help? People showing up at the house and saying, “this needs to be done” or “that needs to be done,” knowing damn well I’m disabled and doing my best alone, sometimes with minimal help. I love my friends, and I know intentions may be good- but when you know I’m struggling and point out problems instead of saying, “hey, I see you’re trying your best,” that shit fucking hurts sometimes.
Some days, all I want is a hug… you know?
Some days I laugh to keep from crying. Some days I cry because the pain is too much. Some days I push through and fail spectacularly. This is my life with CRPS: invisible to most, but very, very real.
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Treatment Attempts
Pain management has been a rollercoaster I wish I could get off.
I’ve tried:
- Physical therapy: Some exercises helped a little, especially when adapted to my body’s hypermobility. Most PT facilities didn’t understand EDS, so I was often treated as if I were just lazy.
- Medications: Pain relievers, nerve pain meds, and anti-inflammatories helped in varying degrees. Some medications clash with EDS or MCAS, so finding what works safely is like threading a needle with overcooked pasta.
- Sympathetic nerve blocks: Limited or no relief.
- DRG (dorsal root ganglion) spinal cord stimulation: At 26, I tried this device implanted to block pain signals to the brain. Trial, implant, revision- all in under 18 months, then eventual removal in 2024 because it didn’t work for me personally. Surgery, recovery, risk- scary. For 40–50% of patients, it can work. I’ll write a full post about my DRG journey later this month. I just hate the idea of swaying someone away from something that may genuinely help them because it didn’t personally help me. Remember: my experiences aren’t universal.
Despite interventions, the pain persists. I’ve adapted, decorated my mobility aids to feel less stigmatized, and trained Luna to provide deep pressure therapy. Small adjustments help me navigate life with an invisible disability that most people won’t recognize.
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Why CRPS Awareness Matters
CRPS is rare, misunderstood, and often dismissed. Because it’s “less known,” it’s minimized or ignored- but that doesn’t make it any less real. Your pain is valid. Your struggles matter. Your story deserves to be heard.
Understanding CRPS, the difference between Type 1 and Type 2, and the daily impact can save lives and prevent misdiagnosis. For those fighting fires like me, keep going. One day, maybe we’ll find a known cure or treatment that helps put the fire out. Until then: you are worth every second.
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Mental Health & Suicide Resources
CRPS is brutal. The pain can make life feel impossible. If you ever feel like you might act on suicidal thoughts or just need someone to talk to, reach out. You are not alone.
U.S.:
- 988 Suicide & Crisis Lifeline: Call or text 988 (24/7, free, confidential)
- Crisis Text Line: Text HOME to 741741
International:
- Samaritans (UK & ROI): 116 123
- Lifeline (Australia): 13 11 14
- Find local hotlines worldwide: https://findahelpline.com
Even when it feels impossible, there is hope. You deserve help, care, and understanding.
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Closing Note
Living with CRPS is a daily negotiation of pain, energy, frustration, and grief. Some days are small victories; some days are survival.
My hope in sharing this story is to give visibility to a disease too often ignored, to validate other invisible struggles, and to remind you that fighting through the fire does matter.
You are not alone. You are not overreacting. Your story deserves to be seen.
-Sky, The Crippled Cryptid
https://linktr.ee/skylanarissa
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