When I was 15 years old, I was hit by a car while riding my bike. It was an accident I wasn’t expected to survive. I sustained major injuries, requiring multiple surgeries and rehabilitation. It was a miracle that I could walk and talk normally again. By 18, though, I started developing chronic neck and back pain, which I managed with physical therapy, exercise, and chiropractic care.
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Then, I developed a little-known gynecologic pain condition, vulvodynia, which proved difficult to diagnose and even harder to treat. Vulvodynia is chronic pain or discomfort in the vulva (the area surrounding the vaginal opening) without an identifiable cause, like an infection. Women may be unable to sit for long periods and can experience pain with tampon insertion and sexual intercourse. As you might imagine, it’s a condition with a great deal of stigma, leaving women feeling isolated and ashamed.
My pain made it impossible to wear pants, sit, or exercise. At its worst, the pain was so unbearable that I couldn’t concentrate. One day, after I turned in an incomplete college chemistry final exam because of the pain, my doctor diagnosed me with vulvodynia. She knew no one who treated it, which shocked me. It seemed inconceivable that a person could be in so much pain for which there was no treatment.
My struggle with pain is hardly uncommon. Chronic pain is the most prevalent, costly, and disabling health condition nationwide. It’s defined as pain lasting at least several months, and it affects 100 million Americans. The estimated annual costs of pain treatment and lost productivity are around $600 billion, according to the National Academy of Medicine.
There hasn’t been nearly enough research comparing which approaches to pain management might work best for people like me and others with similarly challenging conditions. Given pain’s far-reaching effects, more research like that is vital.
There hasn’t been nearly enough research comparing which approaches to pain management might work best for people like me and others with similarly challenging conditions.
From Researcher to Chronic Pain Advocate
On the day I received my diagnosis, I became a researcher. I read articles and looked up the clinicians and scientists who wrote them. I tried more than a dozen therapies. My pain improved but didn’t disappear.
After college, I worked in a neuroscience lab at Johns Hopkins, studying vulvodynia and other pain disorders. Young and naive, I thought that in a few years, we would identify the causes of these disorders and test treatments. I learned that science usually doesn’t work that fast.
Good research takes time and money. Although I loved science and medicine, it became clear to me that we also needed advocacy to establish the societal importance of chronic pain conditions. So, in 2000, I decided to transition into nonprofit advocacy, working for the National Vulvodynia Association. The organization advocates for federally funded vulvodynia research and educates the government and the public on vulvodynia’s importance.
Combining Forces for Complex Pain
In 2000, my vulvodynia resolved with an incredible physician’s help and surgery. This allowed my husband and me to welcome two healthy baby girls, Grace and Faith, into our family. Unfortunately, later, I developed more pain, starting in my jaw and face. This led to headaches and a type of nerve pain called occipital neuralgia. I also experienced hip pain that traveled down my leg and into my foot.
This is not unusual. We now know from a decade of rigorous NIH-funded research that people with chronic pain, especially women, usually develop multiple pain conditions. Patients with multisite pain also experience an increased need for healthcare services and decreased treatment effectiveness, health, and quality of life. Yet most clinicians don’t view pain holistically. In my experience, most gynecologists treat vulvodynia without asking about pain anywhere else in the body.
As part of efforts to address these issues, I and others in pain-related organizations began discussing a range of important questions that research had not answered yet: What’s different about people with one pain disorder versus multiple disorders? How should treatments differ? These conversations led us to create the Chronic Pain Research Alliance, a collaborative effort of pain-related advocacy groups to alleviate suffering caused by pain conditions that commonly coexist.
The Alliance pushes forward high-quality science, investigates overlapping chronic pain conditions, uses the latest scientific findings in clinician education, and works with the pharmaceutical and medical device industries to develop more patient-centered and holistic treatments.
PCORI’s research portfolio includes such studies on nondrug treatments for chronic pain management. For instance, one PCORI-funded study compares the effectiveness of cognitive behavioral therapy to mindfulness meditation in treating chronic low back pain. The study aims to find treatments that manage pain while reducing opioid use. In addition, in every study PCORI funds, patients’ viewpoints are crucial throughout the research process.
We want evidence to help us and our clinicians identify the best treatments based on our health history and personal preferences.
Matching Research Effort to Need
PCORI’s work is especially important because the federal investment in research has not reflected the human and economic burden that chronic pain imposes.
The country’s research spending on chronic pain is just a small fraction of its investment in research on heart disease, diabetes and cancer. Combined, those three conditions affect the same number of Americans as chronic pain.
There’s a misconception that people with chronic pain just want opioids, that we are drug seekers. Actually, what we want are safe and effective treatments for our pain without the potential for addiction.
And we want evidence to help us and our clinicians identify the best treatments based on our health history and personal preferences. One PCORI-funded study that could provide that kind of evidence is testing group sessions that educate patients on pain management tools, help patients communicate with their doctors, and increase patients’ active involvement in their care decisions. The study asks whether people who have chronic pain and are just starting or are on long-term opioid treatment experience better outcomes if they receive these educational sessions than if they don’t.
This kind of evidence is just one reason why the kind of research PCORI funds on chronic pain is greatly needed. Comparative clinical effectiveness research can shed light on what treatments work best for whom, under which circumstances, assessing potential benefits and harms, given the outcomes that people like me care about most. There is still much to learn to help patients and their clinicians treat the complex problem that is chronic pain.
The views expressed here are those of the author and not necessarily those of PCORI.
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Pain is usually temporary, but in chronic pain syndrome (CPS), it's long-term, and life-altering. I don’t even know how I finished up right here, however I believed this submit used to be great. You are so interesting! I do not suppose I’ve truly read through a single thing like this before. So wonderful to find.