By Ed Coghlan.
When Amy Clark, a married mother of two teenagers, was diagnosed with Ehlers Danlos Syndrome two years ago, she went to work, in a way.
“Trying to deal with my pain became a part-time job,” she said.
She was “pretty motivated” to investigate the best ways to deal with her pain—a motivation that intensified when she found out her children also have EDS.
She was taking Vicodin which was helping but she was concerned about using it and kept looking for other alternatives.
She found a YouTube presentation on Quell, a wearable neurostimulator.
What’s also interesting about Quell, is that it is becoming a source of data about chronic pain. Quell’s parent company, NeuroMetrix recent reported results from an observational study of 4000 Quell users to American Pain Society Annual Scientific Meeting in Anaheim. The study leveraged the Quell® Health Cloud, which connects with the Quell wearable pain relief device and its companion smartphone app. The cloud database stores the user’s demographic and clinical profile, health metrics including pain, sleep, activity and gait, and device utilization.
“Chronic pain is too often viewed as a symptom of other diseases, just in the last five years more people are viewing it as a distinct chronic condition which is the right way to think about it,” said Shai N. Gozani, M.D., Ph.D., President of Neurometrix. “Building a data base around that made sense. ”Without large data driven thought processes it’s going to be hard to effectively treat chronic pain.”
The company claims that it is the largest study of any TENS device and is becoming one of the largest chronic pain databases in the world. While the data is certainly going to be used by the Company, they also plan to provide it to academic researchers.
What did they find?
“Not surprisingly, people who used the device every day had dramatically improved outcomes compared to those who didn’t use it regularly,” said Dr. Gozani.
People with chronic pain often have reduced levels of activity, which increases pain and elevates risk of other issues like obesity and heart disease.
“We found out that people’s pain was reduced and sleep was a little better but where we found the most improvement was in activity and mood,” he said. “Improving mood is critical to getting people to do what they need to do in order to address their chronic pain.”
They did not study specific types of pain and whether people were getting more or less relief. Everyone in the study—and each user could decide whether to share his or her data in the study—had chronic pain. People kept doing what they were doing including involving pain medications and therapy.
That’s because Dr. Gozani and Amy Clark and most others we talk to agree that each pain patient has a unique experience and must be self-determinant in finding what works to ease the individual’s pain.
“Chronic pain is a complex biopsychosocial condition that requires a customized treatment approach,” said Dr. Gozani. ”Every patient has to figure out what works.”
Quell is an over the counter product not covered by insurance. The unit costs $250 and there’s a $30 package of electrodes that that must be replaced monthly if you’re using the system often. There’s a 60-day trial period money back guarantee.
For Amy Clark, who lives in South Bend, Indiana her battle is going well. She’s able to exercise regularly, watches what she eats and visits medical providers frequently. She has pain, but is managing it.
“I’m very fortunate to have the time and resources to devote to my battle against chronic pain. I realize not everyone does,” she said. “This is what works for me, which is what every pain patient looks for, something that works for them.”