Complex Regional Pain Syndrome

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In the quiet turmoil of each day

Living with CRPS and Advanced Wet Macular Degeneration: A Journey Through Unyielding Pain and Loss

I live every day burdened by not one, but two life-altering battles. The relentless agony of CRPS—a disease that followed a botched surgery and irrevocably altered my course—remains a constant reminder of how quickly my world can break apart. Unlike type I, which can strike without warning, my type II carries with it the indelible evidence of past trauma, a wound that refuses to heal.

The toll of CRPS goes far beyond physical torment. I have lost my job, my home, and the relationships that once anchored me—my wife and children have gradually withdrawn, leaving me in isolation and despair. Often dubbed “the suicide disease,” CRPS claims its nickname through staggering realities: patients face a nearly five-fold increase in suicide risk, with some studies pointing to roughly one suicide for every 1,800 individuals. In my darkest moments—especially during extreme flares—the thought of ending it all crosses my mind, an echo of the silent, shared struggle that countless others endure.

As if the physical pain weren’t enough, I now fight another battle: the creeping devastation of advanced wet macular degeneration. My vision, once a vibrant window to the world, is dimming and distorting before my eyes. The subtle details of a loved one’s smile, the vivid hues of a sunset—all are fading into a blur of shadows. This loss of sight forces me to navigate a world that is increasingly unrecognizable, adding another layer of isolation and fear to an already fragile existence.

In my interactions, I often pretend that I am not in pain. When someone I truly value—someone whose laughter and warmth have the remarkable power to momentarily lift my spirits—asks how I’m doing, I hide both the searing pain in my body and the despair in my eyes caused by my vision loss. I do this in a desperate effort to shield them from constant pity, to allow a glimmer of normalcy in our conversation. In truth, it’s their presence that soothes my emotional exhaustion, providing a brief escape from the never-ending realities of a progressive, incurable disease.

Starting new relationships or forging friendships now comes with the burden of explaining a complex dual narrative: one of relentless physical agony and another of profound, encroaching darkness. The vulnerability required is immense, and all too often, the well-meaning yet misguided advice—that I simply need to try harder—feels like a dismissal of the intricate and unresolvable challenges we face. Such comments, coupled with a false sense of pity, do nothing to heal the wounds or slow the progression of either CRPS or macular degeneration.

I make these posts not just to vent or complain but to raise awareness about two very rare and persistently misunderstood conditions. Far too many medical professionals have little working knowledge of CRPS or the intricacies of advanced wet macular degeneration. As a result, patients like me are left navigating a treatment landscape where expert guidance is scarce and misconceptions run rampant. By sharing my story, I hope to illuminate the harsh realities that define my daily existence—and the existence of many others—urging both the medical community and the wider public to foster a deeper understanding and more compassionate support.

In the quiet turmoil of each day, I cling to the fleeting moments of connection—the laughter of a friend, the warmth of shared memories, and the unspoken support that reminds me there is still life beyond the pain and fading images. Though my body and vision may continue to deteriorate, these genuine connections are invaluable in softening the harsh edges of a future that all too often feels grim.

03/29/2025

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Resilient masterpiece

Every day feels like starring in my own surreal, offbeat comedy. My advanced wet macular degeneration has me seeing the world as if it were painted by a tipsy abstract artist—everything’s a delightful, unpredictable blur that even Picasso might envy. Meanwhile, CRPS turns every step into an impromptu performance, as if my limbs are staging a rebellious dance-off at the slightest provocation.

But the show doesn’t stop there. Anxiety and major depressive disorder have joined the cast as a hyperactive sidekick duo. Anxiety pops in with wild “what-ifs” that could make even the most daring roller coaster look tame, while depression sometimes casts a gloomy shadow over my scene. I can’t help but quip, "Ladies, you're late for the punchline—I’m headlining this circus!" I channel these moments into riotous creativity, splashing my canvas with bold strokes of laughter and penning songs that transform my challenges into punchlines.

I’ve come to see the absurdity and beauty in it all. Each unpredictable twist inspires me to laugh, paint, and write my way through life’s quirky acts. In this hilariously unconventional production, every setback becomes a stepping stone toward an artful, resilient masterpiece.

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Defying the darkness

Living with CRPS is like navigating a vivid tapestry where reality bends and flickers. It is an otherworldly storm that takes no prisoners, pulling you into a whirlwind of sensations that defy logic. You walk through a world where the ground beneath your feet transforms—a single step might feel like trudging across molten glass, another like drifting on an icy abyss. The body becomes an unpredictable landscape, a land whose laws are rewritten daily by forces unseen and unrelenting.

The ordinary becomes extraordinary, almost absurd. A light breeze can singe like fire; a gentle touch can roar through your nerves like thunder. Time itself twists—minutes dragged into hours by waves of relentless pain. It’s a disorienting journey, a reality both cruelly vivid and strangely surreal. It feels as though every fiber of your being is shouting, whispering, trembling, and aching all at once.

Yet, there are moments—fleeting but bright—where levity finds its way through the chaos. You laugh, not because it’s easy, but because laughter is rebellion, a torch against the absurdity that shadows every day. It’s a reminder that amidst the strange beauty and unyielding storm, there is still a spark within, defying the darkness.

Living with CRPS is a balancing act between the real and the surreal, a paradox where pain becomes your most constant companion and hope your fiercest ally. It’s an uncharted journey that demands to be told, not as a lament, but as a story of persistence, humanity, and connection. And in writing, it takes shape—a reflection of something fiercely beautiful and unshakably resilient.

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The Thief: What CRPS Stole From Me

The world used to be in color. Vibrant, rich hues painted every day — the cerulean sky, the emerald leaves, the fiery sunsets I’d chase with a camera in hand. Now, it’s mostly gray, washed out by a relentless, invisible fire. They call it CRPS, Complex Regional Pain Syndrome, but I call it the thief. It stole my life, my independence, and a piece of my soul I may never get back.

It started after a minor surgery. I brushed it off, chalked it up to normal post-op pain. Then the pain sharpened, twisting into something unrecognizable. It wasn’t just a hurt; it was a screaming inferno that refused to be extinguished. My skin became a live wire — every touch, every breeze, a jolt of agony. My hand, the one that used to deftly wield tools and sketch dreams, swelled and changed color — a monstrous parody of what it once was.

The doctors tried, but the glazed-over eyes, the hushed tones of “rare” and “complex” — they spoke volumes. It felt like I was speaking a foreign language, trying to describe a sunrise to someone who had only ever known perpetual night. How do you explain that your own body has turned against you — that the very nerves designed to protect you are now your torturers?

The hardest part, harder even than the torment itself, is the isolation. Friends, once so close, drifted away. Their initial sympathy gave way to awkward silences, then eventually, nothing at all. “You don’t look sick,” they’d say — a phrase that felt like a punch to the gut. How could I make them see the lightning bolts shooting through my veins, the icy grip that sometimes seizes my limbs, the constant tremor that makes holding a cup a Herculean task? I stopped trying to explain. It was easier to just retreat, to curl up in my own private hell where at least I didn’t have to witness their discomfort or their pity.

I used to be proud. Independent. Self-sufficient. The one everyone came to for help. Now, I’m the one who needs help to open a jar, to button a shirt, sometimes even to just stand. The humiliation is a constant companion, a burning shame that rivals the pain. Asking for help feels like tearing off a piece of my dignity, exposing a raw wound. Begging — even subtly — for understanding or patience is a soul-crushing exercise. I see the flicker of impatience in their eyes, the subtle shift in their posture, and I know they don’t get it. They can’t.

Sleep is a fleeting whisper, a brief reprieve before the flames rekindle. The nights are long and lonely, filled with the echo of my own cries and the terrifying realization that this might be my forever. There are moments — dark moments — when the sheer weight of it all threatens to crush me entirely. The relentless pain, the crushing loneliness, the constant battle to simply exist.

And sometimes, more than anything, I just want to close my eyes and dissolve into the quiet abyss.

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