Jun 25 2025
Narcolepsy Comorbidities: Because Being Perpetually Exhausted Wasn’t Complicated Enough

Written by Tasha Hill, RN

Living with Narcolepsy and multiple chronic conditions is not just a battle against symptoms—it’s a journey of endurance, a test of self-advocacy and often, a fight against invisibility. For those of us navigating this, the experience is not just medical—it’s deeply personal. It shapes relationships, careers and even our sense of self.

The Complex Web of Comorbidities

Narcolepsy is a lifelong disorder of the central nervous system, characterized by the brain’s inability to control sleep-wake cycles. However, it seems that Narcolepsy rarely exists in isolation. A significant number of individuals with Narcolepsy also experience comorbid conditions, including things like autoimmune disorders, Fibromyalgia, Dysautonomia, psychiatric disorders and metabolic syndromes. 

A study published in Sleep Review identified the top 20 comorbidities associated with Narcolepsy, including Restless Legs Syndrome (RLS), Obstructive Sleep Apnea (OSA), Chronic Pain Syndrome, Depression, Migraine, Irritable Bowel Syndrome (IBS) and Fibromyalgia. These conditions often overlap, creating a complex web of symptoms that can make diagnosis and treatment challenging.

The Autoimmune Connection

Your brain has a tiny group of cells that produce something called orexin/hypocretin. This is the brain’s internal “stay awake” hormone. It helps keep your sleep-wake cycles balanced, your energy up and even regulates things like emotions and blood pressure. In people with Narcolepsy Type 1 (NT1), something strange happens: those cells die off. And researchers believe the culprit is the immune system.

According to the 2025 review article “Evaluating the Evidence for Type 1 Narcolepsy as an Autoimmune Disorder,” in NT1, the immune system seems to mistake orexin/hypocretin-producing cells for intruders and destroys them—leaving the brain without the chemical it needs to stay alert and emotionally balanced.

The authors back this idea with some pretty compelling findings:

• Almost everyone with NT1 shares a specific gene (HLA-DQB1*06:02) that’s also linked to other autoimmune diseases.
• Some people develop Narcolepsy after infections like the flu, suggesting that environmental triggers may “flip the switch” in people who are genetically vulnerable.
• Studies have found immune cells and antibodies in Narcolepsy patients that are actively targeting brain proteins—more or less confirming that something autoimmune is going on.

A 2023 study published in Sleep Medicine offers compelling evidence that Narcolepsy is associated with a higher risk of other autoimmune diseases. These findings suggest a strong immunogenetic overlap between Narcolepsy and systemic autoimmune conditions, reinforcing the theory that Narcolepsy—especially NT1—may share common pathways with other autoimmune diseases.

Each condition brings its own set of uninvited symptoms to the party–fatigue, joint pain, digestive issues–that further exacerbate the already overwhelming exhaustion of Narcolepsy.

Dysautonomia and Narcolepsy: A Complex Relationship

Dysautonomia refers to a group of disorders that affect the autonomic nervous system, which controls involuntary bodily functions like heart rate, blood pressure, digestion and temperature regulation. Many individuals with Narcolepsy report symptoms consistent with Dysautonomia, including orthostatic intolerance, tachycardia and gastrointestinal dysmotility. The overlap between these conditions suggests a shared neurological dysfunction, though more research is needed to fully understand the connection.

These symptoms alone are exhausting, but when combined with Narcolepsy, they create a perfect storm. The body is already struggling to regulate wakefulness, and now it’s also failing to maintain basic autonomic functions. The result? A body that feels like it’s constantly short-circuiting.

Narcolepsy and Fibromyalgia

Fibromyalgia is a common diagnosis in people with Narcolepsy. We are actually almost two times more likely to have Fibromyalgia compared to people that don’t have Narcolepsy. Both cause excessive daytime sleepiness (EDS), difficulty sleeping at night, fatigue and brain fog. Fibromyalgia just comes with bonus symptoms like chronic widespread pain, numbness and tingling, headaches and digestive issues–some of which just so happen to conveniently overlap with those of Dysautonomia.

The Domino Effect

Managing Narcolepsy is already a challenge, but when layered with other chronic conditions, it becomes a relentless cycle of symptoms feeding into one another. It’s not just about EDS—it’s about how one malfunctioning system in the body can trigger a cascade of dysfunctions, leaving us scrambling to manage an ever-growing list of complications.

The Cycle of Doom

It’s not just that these conditions coexist—it’s that they actively worsen each other. Narcolepsy causes fragmented sleep, which weakens the immune system. A weakened immune system makes autoimmune flares more frequent. Autoimmune flares increase inflammation, which increases chronic pain and worsens Dysautonomia symptoms. Dysautonomia leads to poor circulation and oxygenation, which further exacerbates pain and disrupts sleep. And so the cycle continues on, for what seems like time immortal.

Imagine waking up already exhausted, as if you ran a marathon, or better, a triathlon, in your sleep. Now layer in dizziness from Dysautonomia, joint pain from an autoimmune condition, muscle pain from Fibromyalgia, digestive issues from IBS, brain fog so thick it feels like trying to think through molasses, Anxiety and Depression from dealing with constant physical chaos and a migraine from the stress of it all. The body is fighting battles on multiple fronts, and each condition amplifies the others, making symptom management feel like a daunting, insurmountable and perhaps impossible task.

The Burden of Self-Education and Medical Gaslighting

One of the most frustrating aspects of living with Narcolepsy and its comorbidities is the burden of self-education. Collectively, we all probably went through several providers before we were finally diagnosed with Narcolepsy. Our journey most likely didn’t stop there though. If your experience was anything similar to mine, since receiving your diagnosis, you’ve seen multiple sleep specialists as well. The course of treatment might dictate who you see, as some providers participate in programs that allow them to prescribe certain controlled and highly regulated medications, and others don’t. Some sleep specialists are neurologists and some are pulmonologists, each of which will have a slightly different focus due to their core training. On top of the relentless challenges we face every day due to these conditions, we may also be forced to take on the doctor’s role—advocating, researching and pushing for the care we deserve.

One online survey showed that physician comfort in diagnosing Narcolepsy is low. Even sleep specialists had knowledge gaps, and a reported 22% weren’t really comfortable diagnosing the condition. When you have other chronic comorbidities, some with overlapping symptoms, many providers may not be equipped to recognize or treat these intersections.

Medical gaslighting—where we are dismissed, misdiagnosed or told our symptoms are psychological—further complicates the journey. Many individuals with Narcolepsy spend an average of 7 to 10 years, seeing six or more specialists seeking a diagnosis. During this time we may be told things like our fatigue is due to Depression, Anxiety, poor sleep hygiene, lack of exercise or being overweight.

The Emotional and Social Toll of Invisible Illness

One of the most difficult aspects of living with Narcolepsy is that it is largely invisible. Narcolepsy doesn’t come with visual markers that people immediately recognize. The exhaustion, the cognitive fog, the crushing weight of an episode of cataplexy—these are felt intensely but rarely seen.

Beyond the physical symptoms, living with Narcolepsy and multiple chronic conditions carries an emotional burden. Many patients face misdiagnosis, stigma and lack of awareness from both medical professionals and the general public.

The invisibility often leads to misunderstanding, skepticism and even judgment. The phrase “you’re just lazy” or “If you tried harder, you wouldn’t be so tired” cuts deeper than many realize. Because, of course, we have tried. We’ve fought through extreme fatigue, forcing ourselves to function while our bodies demand rest. We’ve endured the unpredictability of sleep attacks in public spaces, struggling to explain them away with forced smiles. We’ve felt the sting of missed opportunities—not because we lack ambition, but because our bodies betray us at the worst possible moments.

Additionally, the fluctuating nature of these conditions can make maintaining relationships and employment difficult. Employers may struggle to accommodate the need for scheduled naps or flexible work hours, while friends and family may not fully grasp the extent of the daily challenges faced or what the condition entails. There’s an assumption that medication can “fix” it, that discipline can override fatigue, that we should simply adjust faster. But treatments are not one-size-fits-all, and even the most effective medications don’t fully erase the fundamental challenges of Narcolepsy.

Then there’s the guilt—the feeling that we are constantly letting people down. The canceled plans, the missed deadlines, the exhaustion that prevents us from being fully present. It’s a guilt that weighs heavily because we want to be reliable, engaged and productive. We want to be seen as more than just our diagnoses. We want to contribute to our household, our family, our community. Ultimately, we want to be an active participant in life—not sit on the bench watching as the team wins the game without us. We grieve for the life we once thought we’d have, while trying to figure out how to navigate this one.

For many of us, our energy must be rationed like a scarce commodity. A single outing, a conversation or even a stressful thought can drain all of it in a matter of minutes. And yet, we still push forward, determined not to let our conditions define us.

Advocacy and Awareness

Raising awareness about Narcolepsy and its comorbid conditions is crucial for improving diagnosis, treatment and overall quality of life. Organizations such as Wake Up Narcolepsy (WUN) and Dysautonomia International provide resources, support groups and advocacy efforts to educate the public and medical community. There is even a WUN support group dedicated specifically to Narcolepsy and comorbidities for those navigating multiple diagnoses.

While the struggle is real, so is the resilience. We learn to become advocates—not just for better medical treatment, but for understanding, accommodations and dignity. We learn to articulate our needs, even when it’s uncomfortable. We educate ourselves and others, determined to carve out space in a world that often overlooks us.

And we find “our people.” Through support groups, online forums and conversations like this one, we connect with others who truly understand. Because, in the end, knowing that we are not alone can be one of the most powerful tools in navigating this life with Narcolepsy and other comorbidities.

Patients and advocates alike emphasize the importance of self-advocacy—learning to communicate needs effectively, seeking knowledgeable healthcare providers and staying informed about the latest research and treatment options. By sharing personal experiences and scientific findings, individuals with Narcolepsy can help dispel myths and foster greater understanding of the condition.

Looking Ahead

While there is currently no cure for Narcolepsy, advancements in research continue to offer hope. Emerging treatments, including orexin/hypocretin-based therapies, immune-modulating drugs and gene-targeted approaches, may one day provide more effective solutions for managing symptoms and addressing the underlying causes of Narcolepsy.

For now, those living with Narcolepsy, autoimmune disorders and Dysautonomia must navigate their conditions with resilience, adaptability and a strong support system. By fostering awareness, advocating for better healthcare and embracing a holistic approach to symptom management, individuals can work toward a more inclusive and understanding world.

References:

1. Ciccone, I. (2024, February 22). Increased risk of human leukocyte antigen related autoimmune diseases in narcolepsy. Neurology live.
2. Kilmartin, B. (n.d.). Narcolepsy: Facing gaslighting in medical settings. Narcolepsy.Sleep. 
3. Liu, P.-C., Et. al., (2025). Evaluate the evidence for type 1 narcolepsy as an autoimmune disorder. Journal of Neuro Psychiatry Reports, 1–5.
4. Rosenberg, R. (2012, September 18). Narcolepsy remains misunderstood and underdiagnosed. HuffPost. 
5. Seladi-Schulman, J. (2025, March 7). Narcolepsy and fibromyalgia: Relationship, symptoms, and treatment. Healthline.
6. Staff, S. R. (2024, November 5). Study identifies top 20 narcolepsy comorbidities. Sleep Review.
7. Wang, Y., Et. al., (2025, June 23). Progress of autonomic disturbances in narcolepsy type 1. Frontiers.

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