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  • Writer's pictureSociety of Bioethics and Medicine

Fibromyalgia: The Invisible Illness, Not its Sufferers

Written by Amanda Pisciotta

Edited by Janie Chan

The Invisible Illness

Imagine experiencing debilitating pain, characterized by shooting aches, burning sensations, or throbbing throughout your entire body, targeting extremities, muscles, and joints sometimes all at once. This pain can persist for days, months, or even years, severely hindering your ability to perform daily tasks. Then, when you seek help from medical professionals because you can no longer tolerate the pain, none of them can identify a clear reason for it. Instead, you are unjustly labeled as "lazy," an "attention seeker," a "pill popper," or even "crazy." Unfortunately, this is not an uncommon experience for many of the four million Americans and possibly many more living with fibromyalgia, an invisible illness, which is a chronic and painful condition[1].


What is Fibromyalgia

Fibromyalgia, deriving from the Latin "fibro" (fibrosis tissue) and the Greek "myo" (muscle) and "algia" (pain), is a chronic musculoskeletal pain condition[2]. Initially considered a mental ailment, it was reclassified as a rheumatic disorder in the early 1800s, manifesting as stiffness, pain, fatigue, and sleep disturbances[2]. Afflicting approximately 5% of the global population, fibromyalgia affects individuals of all ages, though it predominantly impacts women aged 20 to 55[3,4]. While its exact cause remains elusive, the prevailing theory suggests alterations in the central nervous system, leading to an abnormal amplification of normal nerve responses[4,5]. Consequently, individuals with fibromyalgia experience pain or other symptoms seemingly untriggered by any discernible physical stimulus. Despite increasing acknowledgment of fibromyalgia's legitimacy among medical practitioners, skepticism persists, with some still questioning its status as a "real" condition due to the absence of definitive diagnostic markers through conventional laboratory or imaging tests. Nevertheless, fibromyalgia's impact is undeniable, inflicting genuine suffering on those affected. Dismissing patients' symptoms as imaginary due to our current lack of understanding undermines their experiences and the complexity of this condition.


Unseen Struggles

Pain in fibromyalgia patients can vary in presentation, but a common diagnostic indicator is chronic widespread pain throughout the body. In fibromyalgia, pain may shift between areas or occur simultaneously in multiple sites. Diagnosis of fibromyalgia commonly relies on a checklist, the widespread pain index, which catalogs the areas where the patient experienced pain within the past week[8]. This assessment is complemented by a severity scale, evaluating the intensity of other somatic symptoms[8]. These assessments yield scores compared against standardized rubric to evaluate whether a patient meets the criteria for diagnosis[8].


The general criterion, alongside other assessments, typically involves experiencing pain in at least four of five key areas: left or right upper region (including shoulder, arm, or jaw), left or right lower region (including hip, buttock, or leg), or axial region (including neck, back, chest, or abdomen)[6]. Descriptions of pain may range from aching to burning to stabbing sensations, varying in severity.

However, pain isn't the sole symptom of fibromyalgia. Other manifestations include fatigue, sleep disturbances, muscle and joint stiffness, tenderness to touch, numbness or tingling in extremities, cognitive difficulties (referred to as "fibro fog"), heightened sensitivity to stimuli like light, noise, and temperature, as well as digestive issues such as bloating or constipation[7]. Additionally, fibromyalgia patients experience periods of intensified symptoms, known as flare-ups, which can be triggered or exacerbated by factors like weather changes, overexertion, stress, illness, travel, hormonal fluctuations, or alterations in treatment[7].


Skepticism & Misconceptions

“Fibromyalgia is Not Real”:

Many fibromyalgia patients grapple not only with the illness itself but also with the enduring scrutiny they face, particularly from medical professionals questioning its validity[10]. Despite widespread understanding among sufferers, convincing others remains an ongoing battle, prompting fundamental questions about what criteria must be met for us to consider something a disease and for sufferers to deserve the help they need. While fibromyalgia lacks a definitive diagnostic test, the persistent pain experienced by patients underscores its significance. Dismissing these symptoms not only fails patients but also contravenes medical ethics and the oath physicians take to respect the health and well-being of patients.

Advancements in neuroimaging, like fMRI coupled with artificial intelligence, have revealed distinct neurological patterns in fibromyalgia patients found in the insula area of the brain and the medial prefrontal cortex, offering tangible evidence of its physiological underpinnings[9]. Despite increased awareness and belief in fibromyalgia's legitimacy, many medical professionals still struggle to grasp fibromyalgia fully, leaving many patients without accessible care. This highlights the urgent need for broader education and acceptance within the medical community.


“Fibromyalgia is a Form of Depression”:

Fibromyalgia is often misconstrued as "masked depression," implying somatic symptoms without identifiable causes[10]. While depression is common among fibromyalgia patients (40-80%), it's important to note that correlation doesn't imply causation[11]. Not all fibromyalgia patients exhibit depression, nor do all individuals with depression report chronic pain. Thus, labeling fibromyalgia as a form of depression is inaccurate, although some symptoms may overlap. 


"Fibromyalgia Diagnosis: A Crucial Step in Patient Care":

There exists a misconception among some that the diagnosis of fibromyalgia (FM) is a result of lazy medical practice, yet this perspective disregards the real pain experienced by patients due to brain processing errors. Contrary to the belief that FM is solely psychosomatic, it is not caused by stress or mental illness, though psychological states can exacerbate symptoms[10]. Denying patients a fibromyalgia diagnosis, despite meeting the criteria, only perpetuates feelings of discouragement, rejection, and stigma, amplifying the already pervasive challenges they face in society.

Recognizing fibromyalgia as a legitimate diagnosis is essential for patients' well-being. Without acknowledgment, patients are left grappling with debilitating pain and the stigma of being dismissed as "crazy”[12]. Delayed diagnosis leads to inadequate treatment and diminished trust in the healthcare system, exacerbating both physical and mental health outcomes[13]. Diagnosis empowers individuals, validates their experiences, and fosters understanding and empathy within the healthcare community[13].

We must shift our perspective on fibromyalgia diagnosis, akin to the transformation seen in understanding migraines in the 1980’s[14]. Just as migraines were once dismissed as severe headaches, recognizing fibromyalgia as a distinct condition improves care and opens avenues for research and funding. Chronic widespread pain should not be normalized, and FM patients deserve access to effective treatment and support.


FM Patients Do Not Need to Suffer

Finding the Right Doctors: 

The journey to effectively managing fibromyalgia hinges on finding the right healthcare provider. While many start with their primary doctors, not all possess adequate knowledge of the condition. After undergoing various tests with inconclusive results, some uninformed doctors may dismiss symptoms or attribute them to depression, stress, or anxiety[6,15]. However, those suspecting fibromyalgia should persevere in seeking answers, as a diagnosis can be delayed for up to five years on average[2].

To expedite diagnosis and treatment, individuals should seek out healthcare professionals familiar with fibromyalgia, such as rheumatologists or pain specialists[5]. Additionally, resources like the National Fibromyalgia Association can connect patients with others facing similar challenges and provide listings of fibromyalgia-friendly doctors in their state[5]. By proactively seeking knowledgeable and supportive healthcare providers, patients can navigate their fibromyalgia journey more effectively.


Exploring Effective Treatments:

Acknowledged as a legitimate condition by the FDA, fibromyalgia treatment often involves medications such as pregabalin (Lyrica), duloxetine (Cymbalta), and milnacipran (Savella), commonly prescribed to FM patients by rheumatologists, pain specialists, primary care physicians, or even neurologists[2,5]. However, beyond pharmaceutical interventions, alternative therapies offer relief. Options like massage therapy, chiropractic care, and acupuncture can alleviate symptoms, as can gentle exercises like swimming, tai chi, and yoga[2]. Lifestyle adjustments, including prioritizing sleep, regular exercise, and stress reduction, also play a crucial role in managing fibromyalgia pain[2]. By embracing a holistic approach to treatment, individuals can find relief and improve their quality of life amidst the challenges of fibromyalgia.


Conclusion

The journey of fibromyalgia patients is rife with challenges stemming from disbelief, stigma, and misperception. The notion that an illness must be understood by doctors to be valid is fundamentally flawed – patients should be able to seek help for their pain without the fear that their doctor or peers will deem them imaginative. Research opportunities exist precisely to bridge gaps in understanding and advance treatments for conditions like fibromyalgia. It is imperative that healthcare professionals acknowledge and address the real pain experienced by fibromyalgia survivors rather than dismissing it or attributing it solely to mental illness. By spreading awareness and holding healthcare providers accountable for effective treatment, we can empower fibromyalgia patients to seek the support and care they deserve. Fibromyalgia may be an invisible illness, but the voices and experiences of those living with it are not. It is our collective responsibility to advocate for their pain-free future and support them on their journey toward healing and well-being.


References:

  1. Dr. Peck. “Number of Americans affected by Fibromyalgia”. Nepenthe Wellness Center. https://www.nepenthewellness.com/americans-fibromyalgia/

  2. Higuera, Valencia. “Fibromyalgia: Real or Imagined?” Healthline. https://www.healthline.com/health/fibromyalgia-real-or-imagined

  3. Ruschak, Ilga; et al. “Fibromyalgia Syndrome Pain in Men and Women: A Scoping Review”. NIH: National Library of Medicine. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9859454/

  4. Bhargava, Juhi; Hurley, John A. “Fibromyalgia”. NIH: National Library of Medicine. https://www.ncbi.nlm.nih.gov/books/NBK540974/

  5. Bilodeau, Kelly. “Getting the best treatment for your fibromyalgia”. Harvard Health Publishing: Harvard Medical School. https://www.health.harvard.edu/blog/getting-the-best-treatment-for-your-fibromyalgia-2020091020905

  6. “Fibromyalgia–Diagnosis & Treatment”. Mayo Clinic. https://www.mayoclinic.org/diseases-conditions/fibromyalgia/

  7. “What is Fibromyalgia?” NIH: National Institute of Arthritis and Musculoskeletal and Skin Disease. https://www.niams.nih.gov/health-topics/fibromyalgia

  8. Wolfe F; et al. “Preliminary Diagnostic Criteria for Fibromyalgia”. American College of Rheumatology. https://www.umassmed.edu/globalassets/office-of-continuing-medical-education/pdfs/cme-primary-care-days/c1-handout-fibromyalgia.pdf

  9. Goldhill, Olivia. “AI can spot the pain from a disease some doctors still think is fake”. Quartz. https://qz.com/1349854/ai-can-spot-the-pain-from-a-disease-some-doctors-still-think-is-fake

  10. Häuser, Winfried. “Facts and myths pertaining to fibromyalgia”. NIH: National Library of Medicine. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6016048/

  11. Singh, Gurmeet; Kaul, Sheetal. “Anxiety and Depression are Common in Fibromyalgia Patients and Correlate with Symptom Severity Score”. Indian Journal of Rheumatology. https://journals.lww.com/ijru/fulltext/2018/13030/anxiety_and_depression_are_common_in_fibromyalgia.

  12. Lobo, Carroline P; et al. “Impact of Invalidation and Trust in Physicians on Health Outcomes in Fibromyalgia Patients”. NIH: National Library of Medicine. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4321014/

  13. Harris, Laura. “Benefits and Challenges of Diagnosis in Mental Health”. Rock Pool. https://thejournalofheadacheandpain.biomedcentral.com/articles/.

  14. Ángel Luís Guerrero-Peral; et al. “Galeata: chronic migraine independently considered in a medieval headache classification”. The Journal of Headache and Pain. https://thejournalofheadacheandpain.biomedcentral.com/articles/

  15. Bard, Stella. “Fibromyalgia Diagnosis”. Healthline. https://www.healthline.com/health/fibromyalgia-diagnosis

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