This chronic pain condition almost only affects women. Most never get treated.
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.
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Yahoo
02-08-2025
- Yahoo
Rare condition made mom feel like she was "walking on a hot bed of Legos"
When Amber Meade twisted her ankle and broke a bone in her foot, she expected recovery to be easy. She needed surgery to shave down the damaged bone and make sure the nerves and tendons in her foot were where they should be. The procedure seemed to go smoothly, but in the weeks that followed, she began to feel debilitating pain. A second surgery found that a screw placed in her foot had been pressing on the head of one of her nerves. That screw was moved, and a nerve decompression was performed but the pain didn't stop. "It would just turn black and blue, swell up really big, and I just was unable to put any weight on it," 41-year-old Meade said. The pain upended everything. She left her job as a surgical assistant since she could no longer stand for long periods. She was unable to take part in family activities with her two young sons. Even light breezes could trigger the pain. Resting under a blanket was unbearable, making sleep difficult. Meade compared the sensation to "walking on a hot bed of Legos constantly, while getting stabbed with a pencil." Meade spent months seeing different specialists. Finally, after nearly a year, a doctor suggested Meade might have something called chronic regional pain syndrome. It was the first time Meade had heard of it. It would take even longer before she could find a treatment that helped her pain. What is chronic regional pain syndrome? Chronic 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 chronic 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 chronic 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. "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." Arkansas officials reveal new details about Devil's Den murders of husband and wife The A.I. Divide | America Unfiltered Defense attorneys refuse new cases in Massachusetts, citing unfair pay Solve the daily Crossword
CBS News
02-08-2025
- CBS News
A mom felt like she was "walking on a hot bed of Legos constantly." It took months to learn why.
When Amber Meade twisted her ankle and broke a bone in her foot, she expected recovery to be easy. She needed surgery to shave down the damaged bone and make sure the nerves and tendons in her foot were where they should be. The procedure seemed to go smoothly, but in the weeks that followed, she began to feel debilitating pain. A second surgery found that a screw placed in her foot had been pressing on the head of one of her nerves. That screw was moved, and a nerve decompression was performed but the pain didn't stop. "It would just turn black and blue, swell up really big, and I just was unable to put any weight on it," 41-year-old Meade said. The pain upended everything. She left her job as a surgical assistant since she could no longer stand for long periods. She was unable to take part in family activities with her two young sons. Even light breezes could trigger the pain. Resting under a blanket was unbearable, making sleep difficult. Meade compared the sensation to "walking on a hot bed of Legos constantly, while getting stabbed with a pencil." Meade spent months seeing different specialists. Finally, after nearly a year, a doctor suggested Meade might have something called chronic regional pain syndrome. It was the first time Meade had heard of it. It would take even longer before she could find a treatment that helped her pain. Chronic 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 chronic 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. 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. "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. 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."
USA Today
28-07-2025
- USA Today
This chronic pain condition almost only affects women. Most never get treated.
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.
