Why Tracking Your Symptoms Can Make You Feel Worse

Katie Golden began a symptom diary when she was first diagnosed with chronic migraines eight years ago. She recorded her pain score, what she ate, where she went, the weather and barometric pressure–anything that would unlock the possible triggers of her recur headaches and help ease the pain.

But here’s the problem with meticulous tracking of symptoms: It can stimulate you feel worse. Fifteen percentage of adults in the US use an app regularly or occasionally to track symptoms of a disease. About as many utilize a sleep-tracking app to figure out whether they get enough shut-eye.

Turns out, dwelling on symptoms, including insomnia, constructs them more likely to occur. Call it the nocebo impact–the dark sibling of the placebo effect, the familiar mind-over-matter tendency that stimulates us feel better if we take a sugar pill that we believe is an effective medication.

“The body’s response can be triggered by negative expectations, ” says Luana Colloca, a University of Maryland neuroscientist and physician who studies placebo and nocebo effects. “It’s a mechanism of self-defense. From an evolutionary point of view, we’ve developed mechanisms to prevent dangerous situations.”

For Golden, a 38 -year-old patient advocate who began with an Excel spreadsheet and later employed specialized apps, tracking initially helped her offer better information to her doctor. But she became focused on every possible factor that could construct her headache worse. “I’ve seen people become very preoccupied with it. I was at one point, ” she says. “What did I do at lunch? What did I do at dinner? It can be all-consuming.”

The symptom tracker doesn’t simply reveal your highs and lows. It renders a state of anxiety–and perhaps more pain.

That’s because our expectations shape how we feel. About 18 percent of people been participating in trials of migraine drugs reported side effects–from a sugar pill.( They didn’t know if they were taking the real drug or the fake one .) In a different study, people who were told that their postoperative morphine was objective felt a sudden surge in pain; other patients whose morphine drip stopped without a specific warning didn’t feel that intense pain.

A stunning example of how the intellect shapes our physiology emerged from a recent Stanford University study of how people react to learning about genetic risk factors. About 200 study participants took genetic tests and were told that, based on the results, they were either at risk of or protected from two obesity-related factors: cardiorespiratory( heart-lung) exercising capability or satiety( feeling full) after feeing. In fact, they had been assigned to the different groups randomly.

The news changed their physiology to match what they were told. Regardless of their actual DN-Abased risk, they had more or less lung capacity and endurance when exercising and more or less of a hormone that makes people feel full.

“It’s likely our body and brain have some internal mechanism[ that responds when we] anticipate something, ” says Colloca, who was not part of the study.

At the same time, we have all sorts of minor aches and inconveniences that we scarcely notice. A symptom tracker brings these to our attention, exaggerating them, says Robert Ferrari, an internist in Edmonton, Canada, who has studied whiplash and other types of pain.

In one study, Ferrari dedicated healthy volunteers a checklist with eight possible symptoms, such as headache or fatigue, and asked how often they recollected having them in the past 14 days. He then asked one group to keep track of any of those symptoms they felt every day. When the volunteers again listed any symptoms from the past 14 days, the people in the tracking group reported twice as many symptoms–and rated them as more severe–than the non-trackers, whose symptom reporting didn’t change.

Ferrari also compared two groups of people with lower back injuries who had been referred to a physiotherapist for exercising therapy. Half maintained a pain diary for four weeks, rating their ache every day on a scale of 1 to 10, and the others did not. At their three-month medical evaluation, only 52 percentage of the people in the pain diary group had recovered from their trauma, compared with 79 percentage in the control group.

Symptoms are warning signs–but if you are already aware of an injury or illness, it doesn’t help to keep focusing on that alert, Ferrari says. “Life is filled with symptoms, ” he says. “If we use symptoms as the benchmark of our recovery, and we’re paying more attention to symptoms, how do we recover? ”

The same principles apply to the trend of sleep tracking. In our tech-centric, always-on world, failing to get enough sleep is both a ailment in itself and a symptom of other problems. Some people can’t fall asleep. Some can’t stay asleep. Some merely don’t lie in bed long enough to get the sleep they need.

Fitbits, Apple Watches, and a range of other devices with sleep trackers turn those problems into data, creating charts of sleep patterns. Kelly Baron, a clinical psychologist and director of the Behavioral Sleep Medicine program at the University of Utah, saw potential in using devices to coax people into better sleep habits.

But then she began to see patients whose sleep issues seemed to stem from the trackers. They were in pursuit of perfect sleep. One patient complained of fatigue and mental fuzziness on days he failed to made the desired eight hours of sleep–even though his average sleep duration was seven hours and 45 minutes.

Other patients worried about not having enough REM sleep, even though sleep trackers don’t directly measure brain waves. Also, there’s no clear relationship between the amount of REM or deep sleep and how you feel the next day, says Baron. “The amount of deep sleep you get at night reduces with age, ” she says. “Some older men have almost no deep sleep and that’s not considered a sleep disorder.”

If you feel crappy in the morning when your sleep tracker says you had a restless, light sleep, maybe it’s because you expect to feel bad. Baron says her own metrics don’t always correspond with her alertness or fatigue.

“There were some nights when my sleep was terrible on my tracker and I felt penalty, ” she says. “Other nights it was like I slept fine, but I felt terrible. “Are symptom trackers entirely worthless, then? Not at all. You simply have to be cautious about how you use them.”

A symptom tracker or even a pen-and-paper diary can help detect patterns in migraine attacks, says Dawn C. Buse, a clinical prof who works with migraine patients at Albert Einstein College of Medicine of Yeshiva University. Tracking can give people a greater sense of control and offer important information about whether medication or other therapies are working.

But if everything begins to seem like a trigger–causing someone to adopt an too strict diet or avoid activities–Buse will gently indicate taking a break. “We have a love-hate relationship with tracking and monitoring, ” she says.

Kerrie Smyres, 42, a migraine patient advocate from Phoenix, stopped using tracking apps because the information itself added to the burden of the disease. She has migraine attacks every day, but before tracking, she perceived they were just happening on most days.

“My coping mechanism at the time was to tell myself it wasn’t as bad as it was, ” she says. Her data collection was interfering with her efforts to find distraction from her pain. Ignorance in this case might not be bliss exactly, but it is better than being reminded of a headache that never genuinely goes away.


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