When Amber Meade twisted her ankle, fracturing a bone in her foot, she imagined a straightforward path to recovery. Her journey began with a surgery designed to smooth the damaged bone and ensure proper alignment of nerves and tendons.
Initially, the operation seemed to go off without a hitch. Yet, in the following weeks, Meade was plagued by agonizing pain. A subsequent procedure revealed a screw in her foot was pressing on a nerve, causing distress. Although the screw was relocated, and nerve decompression was administered, her discomfort persisted.
“It would just turn black and blue, swell up really big, and I just was unable to put any weight on it,” the 41-year-old shared, recounting her experience.
The relentless pain turned her life upside down. Meade had to resign from her job as a surgical assistant because standing for extended periods became unbearable. Her involvement with her two young sons dwindled, as even a soft breeze triggered sensations of excruciating pain. The mere thought of resting under a blanket was tormenting, with nights offering little reprieve. Meade graphically described the pain as akin to “walking on a hot bed of Legos constantly, while getting stabbed with a pencil.”
In pursuit of relief, Meade embarked on a long quest, consulting numerous specialists. Nearly a year into her ordeal, a doctor finally suggested she might be suffering from complex regional pain syndrome, a term unfamiliar to her until then. It took even more time before she could discover a treatment that eased her pain.
Amber Meade
What is complex regional pain syndrome?
Complex regional pain syndrome, or CRPS, is a chronic disorder with no cure, said Dr. Rohan Jotwani, an interventional pain specialist and anesthesiologist at NewYork-Presbyterian and Weill Cornell Medicine. Jotwani was not involved in Meade’s care. CRPS can occur after surgery, like Meade’s, or from other injuries to the nerve.
“For some patients, they’ll have an injury to a nerve and it will get better with time. For some patients, that injury will actually develop into its own chronic pain disorder,” Jotwani said.
Diagnosing the condition is difficult, Jotwani said. No test or scan can definitively identify it, and because it is a rare condition, many doctors may not be familiar with it, he added.
Physicians have to rely on clinical criteria. Telltale hallmarks for the condition are extreme levels of pain at the source, even when nothing should be causing it – like when a bedsheet causes pain, as Meade experienced. CRPS patients may also experience swelling, changes in temperature and skin color or texture changes. They may even begin to lose function in the affected area.
Diagnosing complex regional pain syndrome is only the start, Jotwani said. Actually treating the condition requires a “multi-pronged approach” that can vary from person to person. Treatment typically starts with physical therapy. Patients may also take medication to decrease nerve signals in the area, so they feel less pain, or try interventional techniques like a nerve block. Meade tried multiple options, but nothing was improving her pain.
“Doing regular therapies was not working. I even heard, at 33, that I was getting older and that ‘sometimes we just hurt more.’ I thought that was comical,” Meade said.
Treating complex regional pain syndrome
In 2022, long after Meade’s pain started, a doctor suggested she see physical therapist Dr. Anita Davis, who specializes in treating the condition and leads the comprehensive pain rehabilitation program at Brooks Rehabilitation in Florida. The pair worked to develop a physical therapy routine that would work for Meade.
“Before me, she had all of the traditional exercises … and those things were just not possible with that much pain in her foot,” Davis said. “As healthcare providers, we ask patients to rate the pain from zero to 10. These folks are typically going to be at the top of the scale, even on a good day. When I ask her to do something that’s painful on top of her existing pain, it’s just crazy to think about doing that.”
They also worked on relaxation and emotional exercises to cope with the mental load of the constant pain.
Brooks Rehabilitation
“Pain management for Amber … isn’t just the physical aspects,” Davis explained. “Anything that enhances relaxing the nervous system is valuable.”
The protocol led to some improvements for Meade, but while CRPS patients can have “symptoms subside for a length of time,” it is “a lifelong condition,” Davis said.
“There’s not a cure for it,” Davis said.
Working towards a less painful future
Meade said she still feels pain and discomfort, and is at risk of flare-ups when the weather changes or if she steps the wrong way. In addition to working with Davis, she is taking medication and receiving ketamine infusions every few months. She said the combination of ketamine treatment and physical therapy allows her to “do a lot more than I have been able to.” The effects of the infusion usually last around four weeks. Meade uses that period to work on strengthening her body.
“I try to make some headway in my physical health before that starts going down, because I know it’s going to,” Meade said. “The pain is a lot less when my physical health is better.”
Meade said even without the effects of the infusions, she is dealing with less pain than before her diagnosis and treatment. She can focus on her day-to-day activities. She sleeps better and can walk on the beach, one of her favorite activities. She can’t do too much running around with her kids, but she can play catch and help with homework most days. Meade said she hopes to improve her functionality and eventually go back to work and be more active, but for now, she is grateful for what she has gained.
“I want to try to get to that point where I have less and less flares, and get up to doing what everybody enjoys doing: Working, coming home, having something to work towards, going on vacations,” Meade said. “Every time I have a good day, we work a little bit harder.”
Lucia I Suarez Sang