Patients Share Their Stories of Rare Syndrome That Leaves Them Shaking, With Stabbing Pain
A little-known condition is leaving sufferers with seizures and nerve pain that feels like stabbing bolts of electricity in their limbs.
Unfortunately, INSIDE EDITION’s Jim Moret is all too familiar with the rare condition - known as Complex Regional Pain Syndrome - because his 16-year-old son, Matthew, has been living with the nightmare for five years.
Matthew said: “Imagine a Boa constrictor is going around your leg while someone is trying to stab your leg from the inside out while it's on fire.”
Watch The Full Segment On CRPS
Matthew's condition started when he injured his foot during a soccer game when he was 11. Doctors put his foot in a cast for what they thought was a fracture. Unbeknownst to them, he actually had CRPS.
During our interview, Matthew’s foot fell asleep and just to shake it awake causes terrible pain.
Matthew's pain is so bad he is often bedridden. He misses school for months at a time and has been home schooled because his symptoms inexplicably come and go.
CRPS sufferers often look perfectly healthy, leading to another frustration.
Jim Moret asked his son: “Do you ever feel like people don't believe you?”
“I feel that quite often,” said Matthew.
Another sufferer, Alexandra Annaloro suffers in pain, also battles the condition, which can leave her shaking uncontrollably. Something as slight as a breeze can set off unbearable pain.
She told INSIDE EDITION: “It's painful when it shakes and it's painful throughout every day. I could be sitting, pain in my hip, pain in my arm.”
Doctors believe a car accident triggered her condition. Incredibly, her leg was not hurt in the crash but several months later, it suddenly turned purple and cold.
Dr. Elliot Krane, the Director of the Pain Management Program at Packard Children’s Hospital at Stanford, California, is a leading expert in spotting and treating CRPS. He is one of Matthew's doctors.
Watch Dr. Krane Discuss More About CRPS
“It’s not imagined. It's a very real condition," Dr. Krane said. “The pain is relentless. Its 24 hours-a-day. They can't sleep at night.”
Matthew takes medication each day to deal with the pain because there is no definitive cure.
Matthew’s treatment also includes exercises like mirror therapy in which the healthy foot moves in front of the mirror and the brain is tricked into seeing both limbs moving pain free. It helps to rewire the nervous system.
Jim Moret said: “My son also remains determined and optimistic that he will beat this disease.”
“I sure will, there’s no question in my mind,” said Matthew.
For more information about how to help anyone affected by CRPS/RSD, please visit The Reflex Sympathetic Dystrophy Syndrome Association (RSDSA).