CRPS: The Most Painful Disease You’ve Never Heard Of

What if you lived with chronic pain every day of your life–and not just little “ouchie” pains, but real 8 on a scale of 1 to 10 kind of pain? Kirah DeCarlo can answer that question for you because that’s her reality.

The Apalachin, New York, woman has Complex Regional Pain Syndrome (CRPS) which is also called Reflex Sympathetic Dystrophy Syndrome (RSD), an incurable neurological disorder that mainly affects a person’s arms and legs.

DeCarlo knows firsthand that living with extreme chronic pain can take a terrible toll on the person suffering, their family members, and caregivers. Her mother, Lillian DeCarlo said, “It’s heartbreaking to watch.”

Despite being in almost constant intense pain, DeCarlo isn’t giving up on her life. These days, she’s wearing orange and speaking up for two reasons:

  1. November is CRPS Awareness Month

  2. She hopes that by raising awareness a cure will be found

orange ribbons CRPS most painful uncured disease
Isn’t it time more people learned about CRPS and started pushing for a cure?


According to the National Institute of Neurological Disorders and Stroke, CRPS typically begins in a hand or foot, and then the pain spreads to the rest of the limb. The affected area can be discolored, and sensitive to cold. The level of pain is almost always way out of proportion to the original cause or injury.

DeCarlo’s personal journey with CRPS began 17 years ago and stemmed from a sprained ankle. And, while researchers can’t say with absolute certainty that trauma triggers CRPS, more than 90% of cases diagnosed began with some kind of trauma.

If you would like to download a free informational flyer from, a non-profit organization for information and help regarding CRPS for patients, families, the medical community, the media, and the general public, click here.

what not to say to someone with chronic pain
A little sensitivity goes a long way to improving the day for someone enduring CRPS.


For more information, or to find help, contact the following organizations:

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James Ernest Cassady

James Ernest Cassady

Though "Ernest" is a family name that's been passed down for generations, James truly earned his middle moniker when, at the age of five, he told his mother that "laughing is stupid unless EVERYBODY is happy." Since then, the serious little bastard has been on a mission to highlight the world's shortcomings (and hopefully correct them). In addition to his volunteer work at hospitals and animal shelters, James also enjoys documentaries and the work of William Faulkner. He is originally from Oklahoma.

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