Using Mindfulness for Pain in Neurofibromatosis (ACT Study for Pain)
Life can feel a bit like a juggling act some days. Too often, we find ourselves trying so hard to manage the multiple demands of everyday life—work, family, friends, our health—that it can feel difficult to pause and tune into our needs. Mindfulness is a strategy that helps people slow down and pay attention in the present moment with an open and curious mind. It has been used for decades as a treatment for emotional and physical stress including depression, anxiety, and pain. In fact, it may be helpful for individuals with neurofibromatosis who experience physical pain or stress associated with their condition.
Often, when people experience pain, there is a natural urge to get rid of it. Thoughts may come up about how uncomfortable it is to have this pain, how hard it is to handle, and how much we want it to go away. These thoughts seem to come up almost automatically! This can turn into a bit of a mental and physical battle, in which we negatively judge the pain (thoughts like “This is awful” or “I can’t handle it!”), followed by efforts to get rid of the pain. Because pain can be so hard to treat, this cycle can lead to frustration, anxiety, and can even take a toll on your mood.
Mindfulness practices encourage people to view their experiences from a new perspective, with fresh eyes, and tune into the experience of pain. On the surface this may sound counterintuitive – why would someone want to tune into something that is uncomfortable? Why would I want to be curious about something that has caused so much stress? Well, this approach can help prevent the natural but often-unhelpful cycle associated with pain.
Let’s consider how this is possible. When we are mindful, the focus shifts from making negative judgments about the pain (e.g., “This is unbearable!”) to noticing our experience: Noticing where the pain is in the body, noticing the sensations (is it sharp, dull, radiating?), noticing the thoughts that come up in the moment. It also can help individuals reduce their expectations associated with pain. For example, rather than jumping to the conclusion that the pain will never go away (which can be a less-than-helpful thought!), individuals can learn to stay present, in the current moment. This may open up space for new experiences to take place.
Over time, with a regular mindfulness practice, people can become improve their ability to stay in the present moment and become more skilled observers. This is important because it can help individuals better navigate or handle the pain when it arises. Indeed, research has even shown that mindfulness impacts pain tolerance in the brain! In turn, this practice can help reduce the impact that pain has in our everyday lives and improve quality of life.
At the National Institutes of Health, we are conducting a research study using something called Acceptance and Commitment Training (ACT), which uses mindfulness as a tool, for people with NF1 and chronic pain who are between the ages of 16 and 34 years. If eligible, we will fly you to Bethesda, Maryland for 2 to 3 days to participate in the intervention with a personal ACT trainer. During the next 8 weeks, we will send you weekly email assignments and video chat with you every other week to help support your progress. Then you will return to the NIH for a follow-up visit. The study is randomized, which means that everyone is randomly assigned to either the immediate intervention group or the wait list group (this group will return to get the intervention 6 to 10 weeks later). We pay all participants a small amount to thank them for their time each time they complete a set of questionnaires (up to 4 times total).
For more information, please contact either:
Call (240) 760-6040.
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