What Does a Lyme Flare-Up Actually Feel Like?

I'm writing this from the middle of a flare-up right now. Brain fog and all. So if this rambles a bit, that's part of the story.

It starts with a feeling of doom. A quiet, creeping hopelessness that settles in long before you can name it. You wake up, but you don't feel rested. You know what it feels like to be clear, to feel good, and this isn't it. You just don't feel like yourself.

If you're living with chronic Lyme disease, you know this feeling intimately. It's the shadow of an oncoming flare-up, and I'm in the middle of one right now. For anyone who has ever Googled "what does a Lyme flare-up feel like?" in
the middle of the night, desperate for answers, this is for you. This isn't a clinical definition. This is what it feels like from the inside.

The Physical Toll: An Invisible War Under the Skin

On a good day, my energy level is a solid 10. I've always had good energy, always worked out. Now, it's a five. Getting out of bed is a monumental effort because my sleep is constantly broken. The familiar morning energy I've relied on my whole life is gone. In its place is a constellation of migrating pains. It's a strange, unnerving sensation, like the pain lives just under the surface of my skin, not muscle, not bone, but in a place I can't quite reach. A numbness and tingling sensation radiates in my right hip, sometimes getting worse at night. My right rib area is tender to the touch. My shoulder blade ached relentlessly the other day; now that pain is gone, but my left knee has started to hurt. It comes and goes without reason.

Then there are the sharp, sudden pains in the most random places, like my ankle, a joint I've never had issues with before. It's a constant, unpredictable assault on the body. It makes you feel like a stranger in your own skin. As I told my AI companion, Claude, "I just feel like I have a cold or I'm trying to come down with a cold. And just not feeling great."

Symptom overview:

• Fatigue: Energy level drops by half; broken sleep. "A chore to do anything."

• Migrating pain: Hips, ribs, shoulder, knee; unpredictable. "Just under the surface."

• Neuropathy: Numbness and tingling. "Odd and exasperated."

• Sharp pains: Sudden, stabbing pains in random joints. "Out of nowhere."

• Skin inflammation: Severe eczema flare-ups, hyperpigmentation. "Hurts too much to touch."
  Gut issues: Food sensitivities, inflammation. "Even healthy foods trigger flare-ups."

And sometimes, the pain doesn’t just stay hidden beneath the surface, it shows up where the whole world can see it.”

One of the most debilitating aspects of this flare-up has been the skin inflammation. I was born with eczema, which I now understand was a sign of underlying gut issues. I've had flare-ups throughout my life, but nothing like this. My face has erupted in a way I've never experienced before, causing massive hyperpigmentation that is impossible to hide. It hurts so much that I can barely rinse it with water. Anything more feels like fire on my skin.

The emotional toll of this is profound. I don't want to go anywhere. I don't want to be seen. It's a visible manifestation of an invisible illness, and it adds another layer of isolation to an already lonely experience.

The gut-skin connection is real, and for those of us with Lyme disease, it's often a vicious cycle. Inflammation in the gut leads to inflammation in the skin, and both are exacerbated by stress and dietary triggers. I had found relief in the past through an elimination diet and the carnivore diet, which helped me manage symptoms from my traumatic brain injury. But during this period of stress, I got off course. I started eating foods that are supposedly healthy, avocado, and a bit of cheese, but for my body,
they were inflammatory triggers that made everything worse.

It's a harsh reminder that what works for one person's healing journey may not work for another. Our bodies are complex, and chronic illness makes them even more so. The path to managing symptoms is often a process of trial, error, and constant vigilance.

But Lyme doesn’t only affect the body. Its reach extends into the mind and heart in ways that can be just as devastating.

When Your Skin Becomes a Battleground

The Mental and Emotional Weight: More Than Just Symptoms

The physical symptoms are exhausting, but the cognitive and emotional toll is what truly breaks you down. The brain fog is mind-numbing. I know exactly what I want to say, but the words are lost somewhere between my brain and my mouth. It's a deeply frustrating and isolating experience, making it difficult to work, to think, to simply be yourself.

And with that fog comes a wave of hopelessness. Even when you know, intellectually, that you're in a flare-up and it will eventually pass, it doesn't stop the immediate feeling of doom. This flare-up has lasted longer than the others, and a terrifying question echoes in my mind: Is this the way it's going to be now? Am I going to come out of this?

For decades, patients with these experiences have been dismissed, their symptoms labeled as psychosomatic. But the science is finally catching up. Researchers at Johns Hopkins University have confirmed that the symptoms of post-treatment Lyme disease are not "all in your head." They are the result of real, biological processes, providing a much-needed validation for the millions who have been told their suffering isn't real.

What Triggers a Flare-Up? The Perfect Storm

A flare-up doesn't happen in a vacuum. It's often the result of a perfect storm, and for me, that storm was a prolonged period of intense stress. While trying to rebuild my business, I was hit with months of back-to-back battles for refunds from programs that failed to deliver, culminating in a 62-page document I had to compile for a dispute with my bank.

I was in a constant state of fight-or-flight, dealing with lies and gaslighting, and the stress was relentless. It was during this time that my carefully managed supplement protocol, the very thing keeping my symptoms at bay, ran out. I was so consumed by the stress that I didn't even notice. I wasn't paying attention. And then it hit. A big flare-up.

This experience highlights a cruel reality of chronic illness: stress is both a trigger and a symptom. The stress of managing life and work can cause a flare-up, and the flare-up itself makes it infinitely harder to cope with that stress.

Recent research from Northwestern University (2025) finally validated what patients like me have been experiencing: Post-Treatment Lyme Disease happens because the body responds to remnants of the Borrelia burgdorferi cell wall that break down during treatment but linger in the liver.

This science helps explain why a flare-up can feel so systemic and persistent. It's not a new infection; it's the body's ongoing war with the ghosts of the old one, a war that can be reignited by stress.

Finding Anchors in the Storm: What Helps (Even a Little)

In the depths of a flare-up, it can feel like nothing works. But I have found a few anchors that help me hold on.

Breathwork has been incredibly helpful. I started doing it to help my brain heal from a traumatic brain injury, and it has become a vital tool for managing Lyme. When I can't sleep and my mind starts racing, I focus on my breath. I do it for 15–20 minutes every morning. It helps me focus, quiets the internal chatter, and provides a sense of calm and control when everything else feels chaotic.

Exercise, even when it feels like a chore, is something I push myself to do because I know how important it is. It's not about high intensity; it's about gentle movement and reminding my body that it is still capable.

Supplements and nootropics like Methylene Blue and Phenylpiracetam have made a significant difference for me in the past, especially with brain fog. The financial burden of maintaining a full protocol is a real and pressing challenge, a reality for so many in the chronic illness community. My focus now is on slowly and steadily getting back on course.

You Are Not Alone

If you are reading this from the depths of your own flare-up, know this: you are not alone. Your pain is real. Your exhaustion is valid. Your brain fog is not a personal failing. It is a physiological response to a complex and misunderstood disease.

Sharing this story, even from the midst of the fog, is my way of reaching out a hand. We may be in a storm, but we are in it together.

Lyme Disease Flare-Up: FAQs

What does a Lyme disease flare-up feel like?

A flare-up can feel like an invisible war under the skin. Energy levels drop drastically, pain migrates unpredictably across the body, and fatigue makes even small tasks exhausting. Many patients describe it as feeling like they're "coming down with a cold that never ends."

What are common physical symptoms of a Lyme flare-up?

Typical symptoms include fatigue, broken sleep, migrating joint pain, numbness and tingling, sharp random pains, skin inflammation, and food-triggered flare-ups.

Can stress trigger a Lyme disease flare-up?

Yes. Stress is one of the most common triggers. Prolonged stress disrupts immune function and can reignite symptoms. Research on psychoimmunology notes that stress is among the environmental factors that provoke dysfunction in tick-borne illness [1]. Chronic stress and impaired sleep also compromise immune functioning and contribute to fatigue and cognitive impairment in Lyme patients [2].

Does Lyme disease only affect the body, or can it affect emotions too?

Lyme flare-ups take a heavy mental and emotional toll. Patients often experience brain fog, memory issues, difficulty concentrating, and even hopelessness during flare-ups.

Why do some people with Lyme disease also struggle with skin issues?

There's a strong gut-skin connection. Inflammation in the gut can lead to severe eczema, rashes, and hyperpigmentation. Even foods that are generally considered "healthy," like avocado or cheese, can trigger reactions in some Lyme patients.

What helps manage a Lyme flare-up?

Helpful practices include gentle exercise, daily breathwork, elimination diets, and supplements or nootropics (like Methylene Blue or Phenylpiracetam) to help with brain fog and energy in my case.

Is Lyme disease "all in your head"?

No. Research confirms that lingering Lyme symptoms are not psychosomatic. Johns Hopkins documented that some patients continue to experience fatigue, pain, insomnia, and cognitive issues even after treatment [3]. Northwestern University found that fragments of the Borrelia cell wall may persist after treatment, continuing to provoke immune responses [4]. Additional mechanistic research shows that peptidoglycan fragments from Borrelia can linger and trigger chronic inflammation [5].

1. Fallon, B. A., Levin, E. S., Schweitzer, P. J., & Hardesty, D. (2012). The Psychoimmunology of Lyme/Tick-Borne Diseases and its Association with Neuropsychiatric Symptoms. Journal of Neuropsychiatry and Clinical Neurosciences, 24(4), 429–437. https://pmc.ncbi.nlm.nih.gov/articles/PMC3474947/

2. Bransfield, R. C. (2022). Lyme Disease, Comorbid Tick-Borne Diseases and Neuropsychiatric Disorders. Psychiatric Times. https://www.psychiatrictimes.com/view/lyme-disease-comorbid-tick-borne-diseases-and-neuropsychiatric-disorders

3. Johns Hopkins Medicine. (2018). Study Shows Evidence of Severe and Lingering Symptoms in Some After Treatment for Lyme Disease. https://www.hopkinsmedicine.org/news/newsroom/news-releases/2018/02/study-shows-evidence-of-severe-and-lingering-symptoms-in-some-after-treatment-for-lyme-disease

4. Northwestern University. (2025). Post-treatment Lyme disease syndrome may be driven by remnants of infection. https://news.northwestern.edu/stories/2025/04/post-treatment-lyme-disease-cause

5. McClune, S. L., Durand, J. M., Drecktrah, D., et al. (2025). The peptidoglycan of Borrelia burgdorferi can persist in the host and trigger immune activation after bacterial clearance. Science Translational Medicine / PubMed.https://pubmed.ncbi.nlm.nih.gov/40267217/

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