A study recently published in the open-access journal DovePress looked at the association between fibromyalgia (FM) patients’ perceptions of the understanding and support given to them, especially by healthcare providers, and the effective diagnosis and management of their condition. The study, entitled “Living with fibromyalgia: results from the functioning with fibro survey highlight patients’ experiences and relationships with health care providers,” was conducted by a group of clinicians who specialize in pain management, including an award-winning author of the American Journal of Nursing Book of the Year.

Fibromyalgia

FM is a chronic condition associated with widespread pain in muscles and joints, abnormal pain processing, sleep disturbance, fatigue, and even psychological distress. According to the Centers for Disease Control and Prevention, FM affects approximately 2% to 5% of the U.S. population, predominately women (female to male, 7:1) and the majority are diagnosed as unknown etiology (cause).  Evidence suggests there is a lack of widespread understanding of FM symptoms, coupled with an overlap of these symptoms and other conditions such as chronic fatigue syndrome, depression, anxiety, and irritable bowel syndrome.

This Study

To gain a better understanding of symptoms that had the greatest impact on patients’ daily lives and in an effort to improve care of FM patients by nurse practitioners, primary care providers, and specialists, researchers in online survey of 1,228 patients with FM asked questions that touched on symptoms, impact of symptoms, management of FM, and the relationship with healthcare providers. The survey results included:

• Chronic pain was identified as the key FM symptom, affecting personal and professional relationships, and restricting physical activity, work, and social commitments.
• Patients felt that the severity of their condition was underestimated by family, friends, and healthcare providers.
• The majority of respondents stated that the symptoms that had the greatest impact on their lives included fatigue/low energy, and chronic widespread pain.
• Male patients were not more likely than female patients to report a severe impact of FM-related pain on daily activities, but a higher proportion of female patients reported being inactive as a result.
• The majority of patients said FM symptoms had a significant impact on their romantic relationships, with 68% indicating that pain had forced them to limit physical intimacy with their partners.
• A surprisingly low number of patients (34%) believed their relationship with a healthcare provider had improved their management of FM, so that they were able to better manage pain associated with FM.

The results of this survey-based study demonstrates that FM negatively impacts patients by diminishing their ability to effectively complete day-to-day activities and reducing their emotional well-being. For FM patients and their healthcare providers, these results provide important evidence that there is a disconnect between patients’ needs and the understanding of those needs by trained providers.