Empowering Patients with Multiple Sclerosis to Follow Their Own Path to Pain Relief

May 30, 2014
Carole Bullock, MA

Coping strategies based on enhanced mindfulness and a greater sense of agency can help patients improve their quality of life.

DALLAS —May 28, 2014 – The management of pain associated with multiple sclerosis can be improved when patients take an active role in developing self-management strategies, according to Caryn Seebach, Pychd D.

Seebach, a psychologist in the pain clinic at the Washington VA Medical Center in Silver Springs, MD, presented an overview of this topic, titled: “Pain Psychology: Approaches in MS and Chronic Pain Management,” at the 2014 Annual Meeting of the Consortium of Multiple Sclerosis Centers (CMSC) and the Sixth Cooperative Meeting with Americas Committee for Treatment and Research in Multiple Sclerosis (ACTRIMS).

She said that patients need to be “empowered to be more than just compliant, but looking at their symptoms. Pain signals are a message from the body. The roles of the person with pain are to be a partner in health care and responsible for daily management.”

Health care professionals are viewed as experts, but Seebach maintains that it is the patients who hold the key to effective pain management. By teaching patients about mindfulness, clinicians can motivate them to take an active part in their own treatment and improve their “receptiveness to new coping strategies.”

“Mindfulness is consciously being aware of their health and how to experience with openness, living in the present moment, and engaging fully in what you’re doing, rather than getting lost in your thoughts,” she said.

In pain psychology, it is important to identify, monitor, and treat fallout related to the patient’s suffering from physical pain through an integrative, collaborative team approach that embraces several modalities, which is more effective than a one-sided model that focuses solely on treatment to reduce physical pain.

The key is to shift the focus of treatment to enhance the patient’s control and responsibility over his or her condition, said Seebach. She recommends a self-management approach that engages the patient and requires “more than compliance with a set of instructions;” it is a “more dynamic process of maintaining and managing health in the setting of chronic illness.”

This self-management approach relies on and enhances “the ability of the individual, in conjunction with family, community, and health care professionals, to manage symptoms, treatments, lifestyle changes, and psychosocial, cultural, and spiritual consequences of health conditions.”

One of the factors to consider in this process is the concept of “locus of control” and how patients conceive of their agency in coping with and managing their condition. Focusing on outside or external factors that the patient cannot influence or control “is associated with depression, anxiety, and disease progression,” said Seebach.

Self-management of pain focuses instead on internal factors the patient has more control over and promotes self-efficacy. The essential elements of self management encourage patients to learn about their condition and develop strategies for managing “illness tasks,” identify and access various resources to support them in these efforts, and recognize the emotional responses to living with a persistent illness and develop strategies to integrate wellness into daily life.

Seebach discussed several behavioral models that may be effective in promoting effective self management of pain in patients with multiple sclerosis. One example she cited was Acceptance and Commitment Therapy (ACT), which is associated with “third-wave” behavioral therapies such as Dialectical Behavior Therapy and Mindfulness-Based Stress Reduction. ACT has been described as “existential humanistic cognitive behavioral therapy,” said Seebach.

“ACT gets its name from one of its core messages: accept what is out of your personal control and commit to action that improves and enriches your life,” she said.

With ACT, “symptom reduction is not the primary goal,” said Seebach. Rather, ACT is a set of coping strategies that can help reduce the negative impact of pain on a patient’s daily life regardless of the effectiveness of medical therapy for pain. ACT encourages patients to let go of unhelpful or harmful thoughts and beliefs, accept painful feelings and sensations, and be more engaged in the here-and-now.

As the goal is to empower the patient, the provider cannot be seen as the sole source of healing—he or she needs to be the patient’s partner in daily management. The clinician should provide the patient with information to develop small action plans, offer assistance, and then explore the pros and cons of those plans. “It’s important to set short- and long-term goals,” said Seebach.

Several small studies involving patients with multiple sclerosis have found that ACT was associated with decreased depression, decreased impact of pain on behavior, improved quality of life, and higher levels of satisfaction.

In one study that compared ACT to cognitive behavioral therapy, Seebach said ACT participants showed greater improvements in pain interference, depression, and pain-related anxiety.

In the end ACT and other mindfulness approaches to pain management in patients with multiple sclerosis are about reducing the sense of isolation many patients feel through increased support and empowerment.

“Social interactions and support groups and even pets are part of the psychological support that patients need,” said Seebach. Help patients focus on what they can do rather than what they can’t because of their condition. Help them develop realistic expectations and focus on the things they can do even on their worst days and still be productive.