Amber Meade expected her foot to heal without complications. She rolled her ankle while pushing a shopping cart, but for six weeks, she continued working on her feet at a hospital in Jacksonville, Florida.
As the discomfort grew, Meade, 33 at the time, eventually booked an appointment with the orthopedics specialist at her hospital. An X-ray revealed that she had broken an extra bone in her foot. Surgery was required to both remove the bone and move her tendon over.
But during the procedure, which took place in 2017, an anchor screw used in the repair pressed on a nerve in her foot, causing excruciating pain that left her unable to stand or work.
“As soon as I started waking up in the operating room, I knew there was an issue,” Meade, now 41, says.
For nine months, Meade’s foot swelled, turned purple and left her debilitated. Doctors came up with a myriad of explanations: She needed to push through the pain before it got better. She was “getting older,” her surgeon suggested.
“That made me get a second opinion,” Meade says. “That second opinion is what sent me into the CRPS world.”
Complex regional pain syndrome (CRPS) is a form of chronic pain that usually develops after an injury, surgery, stroke or heart attack. The pain is often more extreme than the severity of the initial injury, but the average CRPS patient will go undiagnosed for nearly four years.
Chronic pain is most prevalent among women, but most research studies investigating pain predominantly focus on men. Of the nearly 200,000 people in the U.S. affected yearly by CRPS, almost three-quarters of patients are women. However, there is a misconception that CRPS is a mental rather than physical illness, and women who seek care for CRPS symptoms are frequently misdiagnosed with mental health disorders, such as depression or anxiety.
“Because it’s rare, it’s hard for people to recognize it and diagnose it,” Dr. Anita Davis, a physical therapist and expert in chronic pain at Brooks Rehabilitation, says. “There’s so much for medical professionals to learn about that these rare diseases seldom make it into the textbook.”
Women with untreated or poorly treated chronic pain report not being believed by their doctors as the core reason why they did not receive adequate care, according to a 2023 study. Reducing a physical illness to a psychosomatic condition not only undermines the patient’s lived experiences, but can lead to feelings of abandonment by the medical system during an ongoing battle of diagnosis searching and interrupted functioning. When pain goes untreated, an individual can suffer from learned helplessness or depression, which an estimated 35-45% of people with chronic pain do.
‘I lost my identity’
Meade sought a second opinion, but that doctor never suggested she could have CRPS. He instead did a decompression from the knee down and a nerve block. It didn’t help.
From there, she got “thrown into the world of pain management.” Failed procedures and a never-ending search for answers led to “severe depression.”
“I was probably in the best shape of my life when this happened,” Meade says, adding that she would run about 5-10 miles a day. She had a young child and a teenager at the time who loved playing sports, and she would play with them constantly.
“Everything in my life came to a grinding halt when this started, and I felt like I lost my identity,” she says.
For 13 months after the initial injury, she had been “standing like a flamingo” at work, putting all her weight on her second foot. She eventually injured the Achilles tendon and got plantar fasciitis on her second foot. After that surgery, the nerve pain impacted both her feet.
Finally, she was sent to a nerve specialist – her third doctor – and heard the first mention of CRPS. She was referred to Davis, who worked with her to provide physical therapy and desensitization therapy, and Meade was able to attend group sessions with other CRPS patients.
Meade had tried a spinal cord stimulator, which some patients have success with, but in her case, it set her on a “massive downfall.” She was nauseous and vomiting almost every day for a year before getting it taken out. She also tried ketamine infusions, but had to pay for them out of pocket, and eventually couldn’t afford to continue with those treatments.
“The most important aspect is getting to the correct type of physical therapy. The quickest I’ve seen the most gains in myself from doing just that,” Davis says.
Regaining the ability to perform simple, everyday tasks significantly improved her quality of life.
“To go through a grocery store by myself and not have to get on one of those scooters, getting out of bed,” she lists. “Most people don’t think about that, but getting out of bed was a big chore.”
Her pain, however, comes in flares.
“Everyday pain feels like I’m walking through fire or ice,” she says. “A lot of moms can relate to walking through a hot bed of Legos, with someone stabbing your feet constantly. That’s what it feels like.”
CRPS has clear signs, but too many doctors don’t know them
CRPS is rare, meaning that it’s not seen by many general practice physicians. Since it most commonly occurs following an injury or surgery, it can be “hard to differentiate,” Davis says.
But among clinicians who are familiar with the symptoms of CRPS, Davis says there are clear signs that can help diagnose patients.
“When people present with complex regional pain syndrome, there’s a significant amount of pain that’s beyond what you would expect with a typical injury, it lasts longer and it’s more intense, and it may even be painful, even after the event has healed,” she explains.
Patients may exhibit temperature differences between the affected and unaffected limbs (i.e., comparing the right and left feet); the affected limb may be colder or warmer, which can be measured with a thermal camera. The affected limb may also be sweatier or drier than the other. Other diagnostic measures include looking at the texture of the skin, and spending time assessing differences in thickness, brittleness and shininess of the skin, Davis says.
“The complexity is, it changes from day to day. It can change from hour to hour. So having more than one data point is very valuable,” Davis adds.
If CRPS isn’t treated early, the disease may progress to further disabling symptoms, such as tissue wasting (atrophy) and muscle tightening (contracture). The skin, bones and muscles may begin to deteriorate and weaken after reduced usage, or the hand and fingers contract into a fixed position.
“We really need to get better at identifying it early to get that right treatment to the right person to get a better outcome,” Davis says.
This article originally appeared on USA TODAY: CRPS left her unable to walk. Doctors kept misdiagnosing her.
The post This chronic pain condition almost only affects women. Most never get treated. appeared first on USA TODAY.
