Stacey Udell had excruciating leg pain after hip surgery in 2011 and doctor after doctor told her it was an effect of the operation and would go away — until one physician finally correctly diagnosed her as having complex regional pain syndrome.
“I felt so helpless that I was not getting any answers,” the 52-year-old Melville woman said. “So many doctor appointments I went to were such an utter waste of time. I wasn’t getting any care or treatment.”
Udell’s story is common, say people who have the condition and doctors who treat them. That’s why Saturday’s fourth annual CRPS walk and expo at East Meadow’s Eisenhower Park was aimed in part at raising awareness of the syndrome among physicians, Udell said.
“I think the lack of awareness is the biggest enemy to treating this disease at this point,” said Dr. Amit Sharma, director of pain management at Good Samaritan Hospital Medical Center in West Islip.
CRPS is characterized by prolonged, severe pain — often a burning or stabbing sensation — that may be constant, according to the National Institute of Neurological Disorders and Stroke. It typically strikes one or more limbs but can affect other parts of the body.
Many people Saturday used canes or wheelchairs as they traveled — often slowly, sometimes wincing when pain sharpened — along the 1-kilometer and 2.5-kilometer routes. Others couldn’t physically endure the distance and stayed in the expo area amid booths for CRPS support groups, pain-management centers, medical cannabis and suicide prevention. A 2009 study that Sharma co-authored found that of 888 people with CRPS surveyed, half had suicidal thoughts since they were diagnosed — a sign of the psychological as well as physical toll the condition takes.
The syndrome usually emerges after a physical trauma such as surgery, fractures, sprains, cuts, bruises or needle sticks.
The trauma that precedes the condition is one reason there often is a delay in a diagnosis, Sharma said. Doctors, many of whom know little about CRPS, often believe the pain patients are reporting is related to recovery from an injury or surgery so “in the early stages, the disease is frequently ignored,” he said. MRIs, X-rays and blood tests won’t detect CRPS.
“It’s more a diagnosis of exclusion,” of ruling out other conditions, said Dr. William Caldwell, director of the Stony Brook Center for Pain Management. Sometimes it is never diagnosed.
A delayed diagnosis can lead to greater long-term pain, because “the sooner we treat it, the better the results typically are as far as outcomes,” Caldwell said.
Ryan Fitzgerald, 20, of Farmingville, began experiencing extreme pain in 2017 after surgery for a knee injury.
“I went to the doctor and I was like, ‘I’m still in a lot of pain,’ and they’re like, ‘Yeah, it’s from the surgery, it’s rehab. You’ll get better.’ And it just didn’t,” Fitzgerald said.
The doctor sent him for physical therapy for his knee — but the therapy made the pain worse because its intensity was designed to help him recover from a knee injury, not to mitigate pain from his undiagnosed CRPS, he said.
He finally stopped physical therapy after four months. By that time, he had to quit his job packing boxes because the pain was so severe.
Fitzgerald then went to an orthopedic doctor and “He said, ‘nothing is showing up on the MRI so you’re fine.’”
Finally, he visited a pain management specialist who — about nine months after his extreme pain had begun — diagnosed him with CRPS. He now regularly does CRPS aquatic therapy that helps mitigate his pain.
Up to 200,000 people nationwide have CRPS, according to the Connecticut-based Reflex Sympathetic Dystrophy Syndrome Association, which conducts conferences on CRPS and supports those with the condition. Saturday’s walk and expo were expected to raise more than $65,000 for the association, said Udell, who was a co-chairwoman of the walk.
Experts believe CRPS is caused by damage to or a malfunction of the nervous system, according to the neurological disorders institute. It is more common among women than men.
In addition to physical therapy, some medications can help reduce pain, but “sometimes we try a variety of medications and injections and interventions, and none work,” Caldwell said.
The buprenorphine and medical marijuana that Udell takes help — but do not eliminate — her pain. Udell’s left leg, arms and neck are so hypersensitive that a gust of wind or brush of a sheet against her can aggravate the pain. She wears only loose, light fabrics.
No drug has been approved by the U.S. Food and Drug Administration to treat CRPS. Instead, doctors often prescribe medications approved for other conditions, such as seizures, that also help people with CRPS.
The lack of FDA approval means that sometimes insurance companies refuse to pay for medications that help CRPS patients, said Dr. Edward Rubin, a Garden City pain management specialist. Sometimes an insurance company will relent after Rubin tries a gamut of alternative drugs.
The difference between using the right treatment early on versus cycling through months of medications that don’t work can be the difference between treatment that reduces long-term pain instead of treatment that eliminates it, Rubin said.
“There are patients I caught early, treated aggressively and their symptoms went away and they’re fine, leading normal, productive lives pain-free,” he said. “The potential is there, but we have to be able to treat aggressively and early.”