Research Brief
A study just published in The Journal of Pain is the first to use an objective measure of activity when comparing activity levels to pain intensity in juvenile primary fibromyalgia syndrome (JPFS).
Researchers used actigraphs -- battery-powered devices that measure the level and intensity of your activity -- on 104 11- to-18-year-olds with JPFS. They say this kind of measurement is important because people often perceive their own activity level as higher or lower than it is.
Results suggested that:
- Most of the kids didn't get the amount of exercise recommended by their doctors.
- Higher pain intensity didn't predict which kids were less active.
- However, the highly active kids had lower pain levels than the inactive group.
- The less active kids were more likely to have symptoms of depression.
Researchers suggested that lower pain levels in the highly active kids may be due to the physical activity, but they also noted that the kids might be more active because they have less pain. In addition, they mentioned that other JPFS symptoms including fatigue and poor sleep, which they did not examine in this study, could make these kids less likely to exercise.
The researchers contend that actigraphy can help us understand physical disability in JPFS and the factors linked to physical impairment. They also called for more research into what factors predict levels of functionality in this illness.
My Perspective
First, I'm always glad to see research into juvenile fibromyalgia. It has some clear differences from adult fibromyalgia, including a higher recovery rate, but we don't really know that much about it. Scientists need to get a handle on it so these kids don't have to face a life of pain and disability.
Second, I'm relieved to see that they're not delivering the tired old line that more exercise makes these kids better -- they're saying it could, but they recognize that less pain may lead to more exercise and not the other way around. Yes, a lot of studies do show that the proper amount of physical activity can help us, but that certainly doesn't mean that the more we exercise the better we'll feel.
I like the use of actigraphy because it compares everyone to the same standard. All of us have a different baseline for activity levels and functionality. Someone who was highly active before they were sick may think that only being able to exercise for an hour a day is a huge disability, while a kid who played video games all day may have always considered 20 minutes of exercise too strenuous. Once activity levels are quantified objectively, we can start making meaningful comparisons.
Interestingly, a recent study showed the need for better pacing in kids with chronic fatigue syndrome. It illustrates something I wish more doctors understood -- that while we need to move, we have to do it within our own parameters or we'll just get worse.
This study is just the tip of the iceberg, but I'm hoping we'll see more like it ahead. These kids need help.
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