Breaking the Silence: Understanding and Overcoming Stigma Surrounding Fibromyalgia

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Fibromyalgia poses challenges extending beyond physical symptoms due to societal misconceptions and inadequate understanding. Clinicians emphasize the importance of addressing mental health, engaging patients actively, and creating supportive environments to improve the wellbeing of these patients.

Breaking the Silence: Understanding and Overcoming Stigma Surrounding Fibromyalgia

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Chronic pain from fibromyalgia impacts numerous aspects of a patient’s life, extending beyond physical symptoms. Since its introduction into medical nomenclature 50 years ago, fibromyalgia has only increased in prevalence while the clinical criteria for understanding chronic pain has changed.1

But the continued lack of understanding surrounding fibromyalgia leads to stigma and challenges in validation from medical professionals, family, and friends. In fact, recent data demonstrated only 1 in 10 clinicians adhered to the American College of Rheumatology (ACR) fibromyalgia criteria, including treatment advice, underscoring the need for better understanding among non-specialized physicians.1 Increasing awareness and providing easily accessible online resources are crucial.

According to expert insight, one of the most significant unmet needs among this patient population is access to comprehensive biopsychosocial care, as interdisciplinary clinics are scarce. Patients require consistent, belief-driven messages from healthcare teams. Moreover, there's a notable unmet need for improved understanding through better education about fibromyalgia.

Other challenges include limited access to tailored treatments like physical therapy and psychotherapy for fibromyalgia. Therefore, ensuring providers feel qualified to deliver fibromyalgia-specific care is crucial. These struggles also include insurance issues, physical therapy barriers, and limited access to complementary therapies.

As anxiety and depression are common among patients with fibromyalgia, mental health support is crucial. Experts urge clinicians to ask open-ended questions about mental health, normalize experiences, and actively seek ways to manage mental health challenges. Therefore, addressing the mental health component, especially through cognitive behavioral therapy (CBT), is an essential aspect of management.

Importance of Patient Participation

Patients with fibromyalgia commonly feel misunderstood, facing challenges in explaining their condition to family and friends. The variability in both symptoms and severity can also contribute to a sense of skepticism from others. Effective fibromyalgia management should involve patient engagement and a message from providers that communicates belief, emphasizing the worthiness of the effort patients put into their care.

Active patient involvement in exploring triggers and considering cognitive behavioral therapy is crucial. Clinicians, even those not specializing in chronic pain, should create an environment where patients feel heard, respected, and believed.

Jenny Dunton, a patient with fibromyalgia and author of Fibromyalgia: A Journey of Self Discovery, 27 Years Traversing the Unknown, explained to HCPLive how she was originally diagnosed with the condition at age 24, and it has lived with fibromyalgia for nearly 3 decades.2

At that age, she was filled with dreams of finding the perfect partner, having children, and building a successful career. When she first began experiencing the symptoms of fibromyalgia, she attributed her pain to the physical strain from her active lifestyle. However, after numerous consultations and various tests to rule out other conditions like lupus and rheumatoid arthritis, her provider eventually landed on a fibromyalgia diagnosis.

Her book was inspired by the common questions she observed among newly diagnosed patients, addressing issues like friends' lack of understanding and job accommodations.

She emphasized having a solid group of people who are invested in understanding the condition and supporting the patient can go a long way in managing the disease.

Lora Black, PhD, MPH, psychologist in the Department of Psychiatry & Behavioral Health at The Ohio State University Wexner Medical Center, recently conducted a study to better understand the perspectives of patients with fibromyalgia. She explained how patients often struggle with understanding their condition, hindering their control and access to necessary care. They feel that explanations are lacking, causing a disconnect in education.3

Results of her trial revealed patients often deal with feelings of being misunderstood and express frustration about their family and spouses not grasping their condition's variability. The pervasive sense of being doubted by family and friends or being accused of exaggerating symptoms resonated with what she regularly observes in her practice.3

Her future research will focus on how patients prefer educational interventions to guide the creation of more effective educational interventions.

“We have really good education interventions that are based on science, and they have really good results,” Black said. “But one thing I noticed was lacking from those was a little bit of the patient input on kind of the specifics and what they really wanted to know and how they wanted to receive that information.”

Educational Gaps, Stigma, and Support

The significant gap in understanding fibromyalgia may lead to misunderstandings among patients, their social circles, and even some of their healthcare providers.

Dunton believes the fight-or-flight state experienced by fibromyalgia patients, coupled with a lower pain tolerance, demands a deeper understanding and a multidimensional

approach to management. This societal misunderstanding and lack of validation create additional barriers, leading to isolation, loneliness, and demotivation for patients.

“A lot of people who have fibromyalgia start to find themselves being alienated from their family and friends,” she explained. “Those situations only increase our stress and depress us more, which feeds the symptoms of fibromyalgia.”

Andrea Chadwick, MD, Anesthesiologist and Pain Management physician at The University of Kansas Health System, believes providers need to address the stigma associated with fibromyalgia.

“Fibromyalgia is very much an invisible condition,” Chadwick told HCPLive. “These are people who look like me and you but have debilitating symptoms that can impact every facet of their life. I think there is a stigma or a judgment that can be imposed on people with this condition who look young and healthy who are just asking for reasonable accommodations and who are trying to get support from their family members. They may need some additional assistance or some grace to be able to manage their symptoms better.”

Another challenging aspect of managing this condition is the scarcity of physician experts in the field who can effectively communicate with both medical professionals and the general public.

Fibromyalgia lacks attention in medical meetings and educational platforms. There's a need for more experts who understand the condition's underlying causes and can convey this knowledge in a way that resonates with different audiences.

“It may be useful to have physicians provide patients with easy-to-understand educational materials about fibromyalgia and related behavioral treatments following office visits, especially when referrals are made to outside specialties like physical therapy and behavioral health,” Hannah Katz, PsyD, associate training director for the Onco-Psychology Postdoctoral Fellowship Track and clinical assistant professor at the Department of Psychiatry & Behavioral Sciences, explained.

Incorporating Mental Health Support

Given the higher prevalence of anxiety and depression in patients with fibromyalgia, clinicians should be encouraged to ask open-ended questions about mental health.

“If you're not a mental health provider to begin with, just asking the question and then letting them answer is a good start,” Black said. “The next step would be normalizing it and acknowledging this a common experience for people with fibromyalgia.”

Chadwick believes integrating mental health support is as essential as prescribing medications or recommending physical activity and similarly expressed the importance of inquiring about how symptoms impact a patient's mental wellbeing.

Referrals to pain psychologists or behavioral health specialists can also help those struggling with their mental health. Patients can explore various options, such as support groups, spiritual or religious activities, volunteering, or even alternative therapies, like Reiki.

CBT is commonly highlighted as an effective treatment, helping patients navigate the mental health component of the disease and address the nervous system disorder aspect of the condition. Although this management option is generally covered by insurance plans, patients often underutilize therapy due in part to social stigma.

A recent study revealed significant and CBT-specific links between brain regions associated with somatosensory/motor and salience processing in this patient population, suggesting these connectivity patterns might play a role in individual variations and treatment-induced changes in somatic self-awareness. CBT has the potential to offer clinical advantages, partly by alleviating pain-related catastrophizing and inducing adaptive modifications.4

An additional study that examined the psychiatric symptoms of patients with fibromyalgia, their attitudes toward seeking psychological help and stigma concerns, demonstrated patients with fibromyalgia have more somatization symptoms than healthy individuals—and as psychiatric symptoms increase in these individuals, their level of disease activity increases. This underscores the importance of CBT and other therapies to help reduce mental burden and in turn pain levels in this patient population.5

However, this is not a perfect solution.

“Although behavioral therapies are recognized as an important component of treatment for fibromyalgia, many mental health providers are not trained in providing these therapies,” Katz said. “To increase access, training programs for mental health providers would benefit from more inclusion of health psychology topics, such as pain management.”

Insurance Issues

While alternative methods are often effective for this patient population, the lack of insurance support creates financial challenges for accessing treatments like massage therapy. It can quickly become financially burdensome, making it unattainable for many patients.

Chadwick explained the limited access to these multidisciplinary therapies covered by insurance is a significant barrier as fibromyalgia requires a combination of treatments, not just medications but also physical therapy and mental health support.

Current pharmaceutical interventions are lacking and there is insufficient coverage for physical therapy and other beneficial activities, impacting patients who may be on fixed incomes or unable to take time off work. The scarcity of a diverse arsenal for physicians creates challenges in finding effective, side effect-free treatments.

Advice for Clinicians

Increased awareness can lead to better understanding, more research opportunities, and ultimately improved care for patients. The complexity of fibromyalgia treatment can be daunting, leading to fear of failure among clinicians. It is important to overcome this fear and actively engage in helping patients on their journey to better physical and mental well-being. Providing hope is equally crucial.

“It is important for patients to feel heard,” Dunton said. “Living with physical or mental pain is a lonely existence and that struggle can become quite overwhelming at times.

Patients need to feel their healthcare team is committed to supporting them in the long term, even if finding the right treatment strategy takes time. Building a therapeutic relationship based on compassion and persistence is key.

“Healthcare providers can empower any patient to engage with symptom management through careful listening, understanding, validation, and helping patients connect with what is most important and meaningful to them outside their medical condition,” Katz said. “While it is important to focus on the symptoms it is also important for the healthcare providers to have a broader understanding of how these symptoms impact quality of life and focusing on improving that can also empower patients.”

Additionally, Black said reassuring patients that their effort is worthwhile can foster a patient-centered approach. Taking the time to ask questions, providing resources, and creating an environment where patients feel heard, respected, and believed can significantly contribute to a patient’s wellbeing.

“There's so many risk factors for developing this, but I think at the end of the day, it's a very human condition because any of us can get it,” Chadwick concluded. “When I see people with this condition, I have so much compassion for them because I know I could get it too and I would want someone to treat me that way.”

References

  1. Van Wilgen CP, Ucles-Juarez R, Krutko D, et al. Knowledge on cause, clinical manifestation and treatment for fibromyalgia among medical doctors: A worldwide survey. Pain Pract. Published online December 29, 2023. doi:10.1111/papr.13339
  2. Dunton J. Fibromyalgia: A journey of self discovery. Fibromyalgia: A Journey of Self Discovery. Accessed February 16, 2024. https://www.fibrojourney.org/.
  3. Black LL, Black WR, Chadwick A, Christofferson JL, Katz H, Kragenbrink M. Investigation of patients' understanding of fibromyalgia: Results from an online qualitative survey. Patient Educ Couns. Published online January 17, 2024. doi:10.1016/j.pec.2024.108156
  4. Jeungchan Lee, Asimina Lazaridou, Myrella Paschali, Marco L. Loggia, Michael P. Berry, Dan‐Mikael Ellingsen, Kylie Isenburg, Alessandra Anzolin, Arvina Grahl, Ajay D. Wasan, Vitaly Napadow, Robert R. Edwards. A Randomized, Controlled Neuroimaging Trial of Cognitive‐Behavioral Therapy for Fibromyalgia Pain. Arthritis & Rheumatology, 2023; DOI: 10.1002/art.42672
  5. Bulu A, Onalan E, Korkmaz S, et al. Attitude towards seeking psychological help regarding psychiatric symptoms and stigma in patients with fibromyalgia. Eur Rev Med Pharmacol Sci. 2023;27(21):10661-10668. doi:10.26355/eurrev_202311_34346
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