The Reality We Live With: Understanding the Challenges Confronted by People Living with Chronic Orofacial Pain

By Brenda C. Lovette MS, CCC-SLP, Doctoral Student and Speech Language Pathologist, and Jonathan Greenberg, PhD, Assistant Professor & Research Staff Psychologist

Broadening Our Lens on Chronic Orofacial Pain

Treatment of chronic orofacial pain is typically biomedical (e.g., focuses primarily on physiological factors) (1–3). However, growing evidence suggests a connection between psychological factors like stress, social considerations, and chronic orofacial pain symptoms and outcomes. The bio-psycho-social model provides a useful framework for a more integrative assessment of these individuals’ experiences, concerns, and priorities (4,5). As implied in its name, the bio-psycho-social model takes into consideration not just the biomedical aspects of living with a condition, (i.e., challenges relating to physical function and physiological aspects of injury), but also the psychological aspects (i.e., challenges relating to cognition, coping, emotion, and mental health or well-being) and social aspects (i.e., challenges relating to interpersonal, socioeconomic, community and life participation factors) (6,7). Identifying specific biomedical, psychological, and social challenges for individuals with orofacial pain is critical for improving care and working towards meeting their needs.

Listening to the Voices of People with Chronic Orofacial Pain

What better way to learn about the challenges associated with chronic orofacial pain than by asking individuals to share their lived experiences?

Qualitative research methods (i.e., collecting and analyzing participants’ experiences in their own words) can help shed light on people’s own perspectives of living with chronic orofacial pain.

For our study, we recruited 260 participants with chronic orofacial pain (e.g., trigeminal neuralgia, trigeminal neuropathic pain, persistent idiopathic facial pain, multiple co-occurring pain diagnoses, and others). See figure 1 for a graphic depiction of diagnoses represented in the study.

Participants were members of the Facial Pain Association. They responded to the question “What is the biggest challenge you face in managing your condition?” by typing their answer into a text box as part of an online survey. We compiled these responses and mapped them onto biomedical, psychological, and social themes. Figure 2 depicts the distinct and overlapping subthemes of participants’ reported challenges across the bio-psycho-social model.

Outlining the Challenges of Chronic Orofacial Pain and Offering Suggestions to Tackle Them

Participants identified several biomedical challenges including pain management, medication side effects, biological functions and related activities of daily living (e.g., sleep, eating, exercise), sensory triggers, and physical symptoms of stress and tension. Our findings illustrated how these biomedical elements impacted participants’ overall health, wellness, and quality of life. We identified several recommendations to address these issues. For example, providers could discuss common medication side effects to empower individuals to make conscious choices about the cost benefit of their medications. To address challenges with activities of daily living, providers should assess and treat sleep, communication, nutrition, and other aspects of self-care to boost people’s health and function despite their pain (8). People with chronic orofacial pain may benefit from referrals including occupational therapy for modifications to activities of daily living (9), speechlanguage pathology for treatment of communication and swallowing function, dietetics to address nutrition, counseling to develop strategies to help manage sensory triggers, and pain-informed mindbody interventions to develop skills around stress and pain management (10).

Psychological challenges described by our participants included anxiety, depression, emotional symptoms of stress, unpredictability/uncertainty of pain, psychological and cognitive aspects of medication management, and positive coping strategies (resilience/mindfulness). Participants’ psychological and emotional challenges were further reflected by the fact that 67% of them exhibited clinically meaningful symptoms of depression and 56% exhibited clinically meaningful symptoms of anxiety based on validated measures. Participants described the interplay of depression, anxiety, and general mental suffering with the severity of their pain condition. They additionally mentioned the unpredictability of their pain as a source of anxiety which impacted their ability or willingness to participate in social activities and work. Our results show the need for accessible and effective psychological programs to target these challenges. Such programs may include Cognitive Behavioral Therapy, mindfulness-based and relaxation interventions, and biofeedback (11–15).

Social challenges described by participants included changes to relationships, roles and responsibilities, experiences with providers, and socioeconomics and access to care. Some described withdrawing from their communities and limiting their engagement in meaningful activities which increased their sense of isolation and hopelessness. To address these social challenges, people with orofacial pain may benefit from treatment which involves spouses and family members. Clinicians may additionally provide people with chronic orofacial pain with resources such as orofacial pain support groups, online forums, and advocacy organizations (e.g., the Facial Pain Association).

Participants described difficult experiences with medical providers and navigating care (e.g., distress around not being “believed” by their providers, difficulty obtaining a definitive diagnosis, and a sense that their providers aren’t knowledgeable enough).

These findings suggest a need for more training and resources for providers who manage these cases and raising awareness of the prevalence of orofacial pain that does not have a known cause. Some participants described difficulty accessing care due to the cost of treatment and insurance coverage issues. This challenge may be particularly prominent for those who are uninsured, experiencing financial insecurity, or who have fewer financial resources (16). To help with this, people with orofacial pain could benefit from the help of social workers to assist in navigating financial and social resources and work accommodations. Our findings also suggest a need for change in policy such as reduced cost for effective pharmaceuticals, and expansion of coverage to evidence-based complementary therapies.

Facing Forward

One unique aspect of this project was the inclusion of individuals with a variety of orofacial pain diagnoses. While most previous research on orofacial pain “silos” participants based on their different diagnoses, the current findings show more similarities than differences in challenges experienced among diagnoses in our sample.

These findings illustrate the wide range of challenges that individuals with chronic orofacial pain face across the bio-psycho-social continuum and suggest important areas for consideration to improve future care.


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