In 1999 Lisa Schmidt went to her doctor because of a headache. But instead of diagnosing the migraine headaches Schmidt believed they had, the doctor believed they had temporomandibular disorder (TMD, also commonly known as TMJ). He referred her to an orthodontist who could make a dental splint for her jaw. The splint locked her jaw and required the first of 12 surgeries.
“I ended up on the surgical carousel,” said Schmidt, now a patient advocate with the TMJ Association. Today, in addition to TMD and migraine headaches, Schmidt has also developed chronic neck and back pain and was recently diagnosed with a joint disease associated with chronic pain, Ehlers-Danlos syndrome. “It’s been one hell of a ride,” she said.
Millions of Americans, mostly women, have chronically overlapping pain conditions, or COPCs like Schmidt. “Women bear the burden of chronic pain compared to men,” said Monica Mallampalli, Senior Advisor for Scientific and Strategic Initiatives at HealthyWomen.
Common COPCs include combinations of TMD, fibromyalgia, irritable bowel syndrome, vulvodynia, chronic fatigue syndrome, painful bladder syndrome, endometriosis, chronic tension-type headaches, migraines, or chronic lower back pain. Scientists don’t fully understand the underlying causes and mechanisms of COPCs, but it is believed that a combination of genetic and environmental factors make some people more vulnerable.
The multitude of possible COPC combinations means that COPC patients can have a wide variety of symptoms. However, common symptoms are fatigue, insomnia, cognitive problems, mood disorders, and physical disorders that result from or worsen the pain.
Diagnosis and treatment
Women with chronic pain conditions are often challenged by health care providers and it can take years to get the correct diagnosis. Black women in pain often face the added challenge of racial prejudice, which can create further barriers to treatment and diagnosis.
“We conducted a survey on HealthyWomen last year and found that at least a third of women said their health care providers didn’t take their pain seriously,” Mallampalli said. “It is often said that everything is in your head.”
When Schmidt’s pain did not improve after her first operations, her surgeon asked her to get psychiatric help. “It started to be my fault,” said Schmidt.
“I think the biggest impact is on [the patient’s] mental health, “said Mallampalli.” Getting the correct diagnosis is important. ”
Having more than one pain condition can further confuse the picture. COPCs can affect different body systems, which means that patients need to see multiple specialists.
“If you have a problem in your pelvic area, see one type of doctor, and if you have a problem in your jaw, see a different type of doctor,” said Christin Veasley, co-founder and director of Chronic Pain Research Alliance. She added that these providers are likely not to communicate about their recommendations.
“It’s becoming a maze of conflicting information. It’s not a rational, sane approach,” Veasley said. “It’s like trying to throw an arrow blindfolded at a dart board and hoping you can find something that sticks.”
For some, medication can help. For others, massage therapy and acupuncture could bring relief. Still others can best handle a combination of pharmacological and non-pharmacological interventions. Because people with COPCs can experience any combination of medical conditions and not every treatment is right for everyone, interventions need to be tailored to the individual.
What Veasley, Schmidt, and other COPC proponents want is an approach that recognizes how individual pain conditions in the body may be related and how these conditions play a role in health and wellbeing.
“You need a team-based, interdisciplinary approach. Very few [clinicians] ask about body-wide symptoms, “said Veasley, who has COPCs herself. Doctors may not ask about mood disorders or sleep disorders that may appear alongside COPCs, for example.” I have tried hard to find knowledgeable healthcare providers and effective treatments, “she said.
There are currently only about 4,600 pain specialists and far fewer pain centers in the United States who offer a diverse approach to treatment. Additionally, COPCs were not a research priority and have only been recognized in the last decade. There are few rigorous studies evaluating COPC results and treatments. But some progress has been made.
“The term chronically overlapping pain states did not exist 10 years ago and it does not exist now,” said Veasley, adding that there is more awareness of the interconnectedness of conditions in the medical community.
Carrying out further research remains crucial. Without this data, doctors cannot recommend evidence-based treatments.
Live with pain
While many chronic pain conditions are not life threatening, they can be debilitating, which is why research into treatments is critical. At the age of 30, Schmidt had to turn away from her career at NASA, where she trained astronauts on hardware used during the space station and shuttle missions to manage their health problems. The pain and the resulting fatigue make it difficult for her to carry out everyday tasks such as cooking dinner.
“People don’t understand that it puts a strain on the body,” said Schmidt.
People who live with pain also deal with stigma. “We have these beliefs in our society about pain that pain is just weakness that leaves the body or mind through matter – as if you can figure out a way out of illness,” said Veasley.
To cope with this, people with chronic pain develop their own strategies and pursue passions and distractors. For Veasley, that’s photography. “When I’m out and about in the sunset and take photos, it distracts from the physical pain for a short time,” she said.
For Schmidt, the focus on positivity and her work as a patient advocate helps to deal with it. “It gives me meaning and helps me keep going.”