Chronic Pain Condition Almost Only Affects Women, but Rarely Gets Treated
More women than men are affected by a rare condition linked with chronic pain. However, when women talk to their doctors about their pain, they feel their concerns are not taken seriously.
Amber Meade, a 41-year-old nurse in Jacksonville, Florida, said the responses she received from her doctors were along the lines of “you need to push through the pain.”
A foot surgery Meade had in 2017 caused so much pain that she was not able to stand or work. For nine months, rather than getting relief and answers to her health questions, Meade said she heard various explanations from doctors, including a surgeon who told her that she was “getting older.”
“That made me get a second opinion,” Meade told USA Today. “That second opinion is what sent me into the CRPS world.”
Meade was referring to complex regional pain syndrome (CRPS), a rare chronic pain condition caused by an injury, surgery, stroke, or heart attack. It’s considered rare because many general practice physicians do not see this in their patients. The pain is often more intense than the initial injury. According to the Cleveland Clinic, the pain is either constant or comes and goes, and it feels like burning, stinging, or tearing. Often, it is deep within an affected limb.
The Cleveland Clinic reports that CRPS affects about 200,000 people each year in the United States, and almost three-quarters of patients are women.
“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, told USA Today. “There’s so much for medical professionals to learn about that these rare diseases seldom make it into the textbook.”
CRPS Typically Diagnosed As a Psychological Problem
CRPS is often misunderstood as a mental condition, and women seeking treatment are frequently misdiagnosed with depression, anxiety, and other mental health disorders.
Making women’s pain a psychological issue rather than a physical one, “not only leads to an underestimation of a massive health problem but also has a negative impact on their illness experience,” according to a 2023 study about women and pain.
The study noted that women with chronic pain often feel dismissed by their doctors, which prevents them from getting adequate care. What’s more, because women believe they are not taken seriously, “they feel abandoned by health professionals, family members or partners, friends, and colleagues,” the study noted.
Another study found that failing to treat pain can lead to learned helplessness or depression, affecting roughly 35-45 percent of those with chronic pain.
Meade said she experienced depression after being “thrown into the world of pain management” following a second opinion. Failed procedures and an endless search for answers led to “severe depression,” she said.
“I was probably in the best shape of my life when this happened,” Meade told USA Today. Meade said she would run about five to 10 miles a day, and she had a young child and a teenager who loved playing sports, and she enjoyed playing with them.
“Everything in my life came to a grinding halt when this started, and I felt like I lost my identity,” she said.
For a little over a year after her initial surgery, Meade had been “standing like a flamingo,” putting all her weight on her second foot. Unfortunately, this caused an injury to her Achilles tendon, and she developed plantar fasciitis in her second foot.
After that surgery, both her feet were affected by nerve pain. It was then that she was referred to Dr. Davis, a nerve specialist (and her third doctor), who told her about CRPS.
Identifying Symptoms of CRPS
Since CRPS develops after an injury or surgery, it can be “hard to differentiate,” Dr. Davis told USA Today. However, CRPS has clear signs for clinicians to look for that can aid in diagnosing 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,” Dr. Davis said.
A few of the symptoms that Dr. Davis said clinicians can look out for include:
- • Patients showing temperature differences between the affected and unaffected limbs. For example, the affected limb may be colder or warmer than the unaffected limb. The temperature can be measured with a thermal camera.
- • The affected limb may be sweatier or drier than the other limb.
Dr. Davis said another measure includes examining the texture of the skin and spending time to assess differences in thickness, brittleness, and shininess.
“The complexity is, it changes from day to day,” Dr. Davis added. “It can change from hour to hour. So having more than one data point is very valuable.”
Clinicians can also refer patients to other resources, like Dr. Davis did for Meade. For example, Dr. Davis collaborated with Meade to provide physical therapy and desensitization therapy, and Meade attended group sessions with other patients with CRPS.
Another factor involved is patients determining the type of treatment that works best for them. For instance, Meade said she tried a spinal cord stimulator, which other patients found helpful. Meade said this treatment set her on a “massive downfall.” She experienced nausea and vomiting almost every day for a year before getting it taken out. She also tried ketamine infusions, but couldn’t afford to continue the treatment because she had to pay for it herself.
“The most important aspect is getting to the correct type of physical therapy,” Dr. Davis said.
With Dr. Davis’ help, Meade’s quality of life has improved, and she has regained her ability to perform simple, daily tasks, such as going to the grocery store by herself, not needing a scooter while in the store, and getting out of bed.
” Most people don’t think about that, but getting out of bed was a big chore,” Meade said.
Meade’s pain, however, hasn’t totally disappeared.
“Everyday pain feels like I’m walking through fire or ice,” Meade said. “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.”
If CRPS isn’t diagnosed and treated early, the condition can worsen and cause more debilitating symptoms like atrophy (the gradual loss or shrinkage of tissue or organs) and contracture (permanent shortening and tightening of muscle).
“We really need to get better at identifying it early to get that right treatment to the right person to get a better outcome,” Dr. Davis said.
Source Links:
https://www.frontiersin.org/journals/medicine/articles/10.3389/fmed.2023.1189126/full
https://my.clevelandclinic.org/health/diseases/12085-complex-regional-pain-syndrome-crps
