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  • Writer's pictureMichael Lenz

"Why is the diagnosis of fibromyalgia and related conditions delayed?"An exploration

Updated: Dec 17, 2023


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Introduction

The journey to a fibromyalgia diagnosis can be a long and frustrating one for many individuals. Despite its prevalence, diagnosing fibromyalgia remains a challenge, resulting in delayed and even missed diagnoses. This blog post will explore the reasons behind this delay and shed light on the important factors contributing to it.

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Lack of Training and Specialization

One major reason for the delay in fibromyalgia diagnoses is the lack of comprehensive training and specialization among healthcare professionals. While rheumatologists may be the most familiar with the diagnosis, the management and comprehensive understanding of fibromyalgia require a unique set of skills. Unfortunately, most medical disciplines, including neurology, physical medicine and rehab, orthopedics, and even gastroenterology, often only recognize their chronic regional pain syndromes Germain to their specialty but fail to recognize fibromyalgia.

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Who Should Manage Fibromyalgia?

With fibromyalgia affecting various parts of the body, the question arises: Who should be responsible for managing this complex condition? Interestingly, primary care physicians - pediatricians, internists, adult physicians, and family practice doctors - are best positioned to address fibromyalgia comprehensively. However, these doctors often lack extensive training and experience in managing fibromyalgia, which further contributes to the delay in diagnoses.

Is it okay not to make the diagnosis?

It is acceptable not to make the diagnosis. No medical director of a clinic will pull you into the office for not making a diagnosis. You won't get sued for missing the diagnosis as fibromyalgia in and of itself doesn't kill someone like cancer or a life-threatening infection can. The default is not to bring it up. It is still stigmatized by many.

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Fear of Making the Diagnosis

You have heard of FOMO. It is the fear of missing out. In fibromyalgia, there is apprehension about making the diagnosis. Another crucial factor contributing to delayed diagnoses is the fear among healthcare professionals in making the fibromyalgia diagnosis. This fear stems from the lack of experience managing the condition and the uncertainty surrounding the appropriate course of action. Unlike some other medical conditions where immediate action can be taken upon diagnosis, fibromyalgia requires a personalized bio-psycho-social medical model, making it more challenging to determine the right approach for each individual. Also, when receiving any diagnosis, a patient's logical question is, "What is it, how do I treat it, and what is the prognosis?" These questions are often not confidently understood by the physician. It is hard to say, "I don't know. I'm sorry."

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Complex Nature of Fibromyalgia

Fibromyalgia is a nociplastic condition. Nociplastic pain is the semantic term suggested by the international community of pain researchers to describe a third category of pain that is mechanistically distinct from nociceptive pain, which is caused by ongoing inflammation and damage of tissues, and neuropathic pain, which is caused by nerve damage. The mechanisms that underlie this type of pain are not entirely understood, but it is thought that augmented CNS pain and sensory processing, and altered pain modulation play prominent roles. The symptoms observed in nociplastic pain include multifocal pain that is more widespread or intense, or both, than would be expected given the amount of identifiable tissue or nerve damage, as well as other CNS-derived symptoms, such as fatigue, sleep, memory, and mood problems. The overlapping pain syndromes and the cognitive struggles add to the complexity of making a definitive diagnosis. Furthermore, managing fibromyalgia extends beyond relying solely on medications. It requires a comprehensive approach that includes lifestyle modifications and self-management techniques, which many healthcare professionals are not adequately trained in.

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Co-occurring Conditions

Fibromyalgia often co-occurs with other medical conditions, further complicating the diagnostic process. These conditions may be outside the comfort zone of many physicians, making it harder to recognize the full spectrum of symptoms and provide appropriate management. Addressing these co-occurring conditions and their overlapping symptoms becomes crucial for effectively diagnosing and managing fibromyalgia. Many will be more apt to diagnose some with depression or general anxiety disorder rather than make the diagnosis of a nociplastic illness like fibromyalgia despite having failed trials of multiple SSRIs and don't feel depressed but being more fatigued and frustrated and in pain. When patients share that they don't feel that is a correct assessment, the physician is in a bind as to what to do next.

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Where to go from here

Diagnosing fibromyalgia poses significant challenges in the medical field, not so much due to difficulty making the diagnosis but due to the muted desire to get into the deep muck of complexity and sort things out. I have been in the muckety muck of this complexity my whole medical career due to my passion for helping others understand their illnesses better. The delay in diagnoses can be attributed to the lack of training, fear of making the diagnosis, and the complex nature of the condition itself. It is crucial for healthcare professionals to receive comprehensive education and support to understand and manage fibromyalgia. By improving diagnostic practices, healthcare systems can ensure timely access to appropriate care for individuals living with fibromyalgia.

When physicians like myself have learned about these conditions and take them on, it can lead to the most rewarding patient experiences, helping guide patients through hopelessness to living and feeling better.

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