Fibromyalgia Isn’t Just Pain: Why the Fatigue Hits So Hard

December 15, 2025 JoLeave a comment

When people hear “fibromyalgia,” they usually think of pain — aching joints, sore muscles, that constant feeling like you overdid it yesterday even when you didn’t.
Pain is part of it, yes. But for many people with fibromyalgia, fatigue is the symptom that quietly dismantles daily life.

This isn’t the kind of tired that goes away with a good night’s sleep or a strong cup of coffee. Fibromyalgia fatigue is persistent, physical, and rooted in how the nervous system functions.

Common Fibromyalgia Symptoms (Beyond Pain)

Fibromyalgia is a multisystem condition, not a single-symptom diagnosis. Common symptoms include:

Chronic widespread musculoskeletal pain
Ongoing fatigue
Non-restorative sleep (waking up unrefreshed)
Cognitive difficulties (“fibro fog”)
Sensitivity to light, sound, temperature, or touch
Headaches or migraines
Gastrointestinal issues (often overlapping with IBS)
Muscle stiffness, especially in the morning
Mood changes linked to nervous system stress

Not everyone experiences every symptom, and severity can fluctuate — sometimes daily, sometimes hourly.

What Makes Fibromyalgia Fatigue Different?

Fibromyalgia fatigue isn’t simply being tired from doing too much. It’s tied to central sensitization, a process in which the brain and spinal cord become overly reactive.

In simple terms:

The nervous system stays partially “on alert”
Pain signals are amplified
The body burns energy just maintaining baseline function

Even rest can require effort when the system responsible for regulating stress, pain, and recovery isn’t working efficiently.

Think of it like running multiple background apps you can’t close. The battery drains faster — even on low activity.

Mayo Clinic explains that people with fibromyalgia commonly experience fatigue and disrupted sleep, noting that individuals often wake up tired even after sleeping for a long time, as pain and related sleep disorders can interfere with rest. Mayo Clinic

Why Sleep Doesn’t Fix Fibromyalgia Fatigue

One of the most frustrating aspects of fibromyalgia is that sleep doesn’t reliably restore energy.

Research shows that people with fibromyalgia often experience:

Disrupted sleep architecture
Reduced time in deep, restorative sleep stages
Alpha-wave intrusion during sleep, keeping the brain partially alert
Frequent micro-arousals caused by pain or nervous system activity

This means someone can be unconscious for eight hours and still wake up feeling unrefreshed, stiff, and exhausted.

Sleep happens — but rest doesn’t fully occur.

Sleep research indicates that people with fibromyalgia often experience abnormal sleep patterns, such as reduced deep sleep and brain activity resembling wakefulness during sleep stages, which helps explain why rest does not always feel restorative. Sleep Foundation

The Role of the Nervous System

Fibromyalgia is increasingly understood as a disorder of nervous system regulation, not muscle damage or inflammation alone.

When the nervous system struggles to downshift:

Muscles remain tense
Pain signals remain elevated
Stress hormones like cortisol can become dysregulated
Energy recovery is impaired

This is why fatigue in fibromyalgia often feels disproportionate to activity levels — and why pushing through it usually backfires.

Why “Just Rest More” Misses the Point

Well-meaning advice like “get more sleep” or “listen to your body” often falls short because it assumes the system responsible for rest is functioning normally.

In fibromyalgia:

Rest helps, but it’s not a cure
Sleep matters, but it’s not always restorative
Energy management requires strategy, not willpower

Understanding this difference matters — medically, socially, and personally.

The Bottom Line

Fibromyalgia fatigue is not laziness, lack of motivation, or deconditioning.
It’s a nervous system issue that affects how the body processes pain, stress, sleep, and recovery.

Recognizing fatigue as a core symptom — not a side effect — is essential to understanding what living with fibromyalgia actually looks like.

Because when the system itself is misfiring, exhaustion isn’t a failure.
It’s feedback.
Til next time gang, take care of yourselves, and each other!

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When You Can’t Tell If It’s a Flare or a Flashback (And Why That’s Terrifying)

October 5, 2025 JoLeave a comment

Your heart’s doing the cha-cha at 130 beats per minute. Your chest tightens. The world tilts. Your hands shake. Your brain starts whispering, “Hey, are we dying or just freaking out again?”

Is it POTS? A panic attack? A flashback to that one time your body really did betray you?
You’ve got about thirty seconds to figure it out before the anxiety of not knowing makes everything worse.

Welcome to the impossible diagnostic puzzle that is living with chronic illness and PTSD from medical trauma.

When Your Body Is Both the Scene of the Crime and the Witness

People with chronic illnesses are statistically more likely to develop PTSD-like symptoms—but the kicker is, it’s not from a one-time event. It’s because your body is an ongoing threat to your own sense of safety.

Unlike classic PTSD, where the trauma is technically in the past, medical PTSD means the trauma could literally happen again.
When you live with something like POTS, EDS, or MCAS, your body is both the suspect and the alarm system. The hypervigilance isn’t paranoia—it’s pattern recognition. You’ve learned that symptoms can mean something is seriously wrong.

But here’s the nightmare twist: those same symptoms—heart racing, shaking, dizziness—are also identical to a panic attack.

The Overlap That Makes You Want to Scream Into a Pillow

Let’s play a fun game called “Spot the Difference” between POTS and panic attacks:

POTS Symptoms:

Rapid heart rate (120+ bpm)
Dizziness or lightheadedness
Shortness of breath
Chest tightness
Trembling, sweating, nausea
Feeling like you might pass out

Panic Attack Symptoms:

Rapid heart rate
Dizziness or lightheadedness
Shortness of breath
Chest tightness
Trembling, sweating, nausea
Feeling like you might pass out

Yeah. Exactly the same.

So you sit there, pulse pounding, trying to decide if you need electrolytes or grounding exercises. And the longer you try to figure it out, the more anxious you get. Which—you guessed it—makes your heart race even more.

Congratulations, you’ve just triggered both conditions at once.

The “Is It My Body or My Brain?” Spiral

Heart rate spikes.
You think, “Is this POTS or panic?”
The uncertainty feeds the anxiety.
Anxiety makes your heart rate climb higher.
PTSD brain jumps in like, “Hey, remember the last time this happened?”
Your body floods with stress hormones.
Symptoms worsen, clarity vanishes, and you’re stuck in a full-body loop of chaos.

Sometimes grounding doesn’t work. Sometimes standing makes it worse. Sometimes everything makes it worse. The mental gymnastics of self-triage would exhaust an Olympic athlete, and that’s before you even factor in the fatigue that both conditions bring.

When Hypervigilance Isn’t a “Coping Issue”

In classic PTSD, hypervigilance—constantly scanning for danger—is something therapy tries to reduce.
But when you live with a chronic condition that can cause fainting, cardiac issues, or anaphylaxis, that vigilance might literally save your life.

So how do you tell your brain to “calm down, you’re safe” when sometimes… you actually aren’t?

This is the impossible bind of trauma plus illness:
PTSD therapy says, stop monitoring every sensation.
Your medical team says, monitor every sensation.
Neither is wrong. Neither fully works.

The Medical Gaslighting Cherry on Top

And just to make it more fun: when you do seek help, you get hit with the “it’s just anxiety” script.

Even though POTS isn’t caused by anxiety, and even though research shows anxiety rates are about the same as the general population, you’ll still have doctors waving off your physical symptoms because your chart says PTSD.

You start to lose faith in professionals. You stop asking for help. You learn to rely only on yourself for triage—because nobody else seems capable of telling the difference either.

Which means you’re back to square one, again, sitting in the impossible space of trying to figure it out alone.

The Treatment Contradiction

PTSD therapy often involves exposure work—facing the thing that scares you until your brain chills out about it.
Except in this case, the “thing that scares you” is your own body.

You can’t just take a break from having a body. You can’t “gradually reintroduce” the experience of dizziness or tachycardia when those things are daily realities that might require medical intervention.

Worse, some PTSD therapies intentionally raise your heart rate to help you practice staying calm through physical sensations. That’s great… unless you have POTS, where that heart rate spike might actually make you faint.

So you end up in a no-win situation where treating one condition can trigger the other.

What Actually Helps (Sometimes)

There’s no perfect fix here. But there are ways to soften the edges:

💡 Look for patterns, not moments. Track triggers over time. Are symptoms linked to posture, temperature, dehydration, or specific memories? Zooming out can help reduce panic in the moment.

💡 Build a “both/and” plan. Sit down? Yes (helps POTS). Ground yourself? Yes (helps panic). You don’t have to guess which one it is to respond with compassion instead of chaos.

💡 Find trauma-informed doctors. You need providers who understand that your nervous system and your medical symptoms aren’t separate universes.

💡 Accept uncertainty. Sometimes you just won’t know—and that’s not failure. That’s reality.

💡 Validate yourself. You’re not dramatic. You’re not broken. You’re reacting appropriately to a wildly confusing body situation that most people can’t imagine.

The Unspoken Truth

Living with medical PTSD and chronic illness means constantly trying to interpret a body that lies to you and tells the truth at the same time.

It means your hypervigilance is both too much and not enough.
It means your body is both the warning sign and the danger.

You’re not failing to cope—you’re surviving something that isn’t designed to make sense.

And honestly? That’s nothing short of heroic.

Til next time, gang, take care of yourselves, and each other!

🧠 Research Toolbox

American Psychological Association. Medical trauma and PTSD in patients with chronic illness (2020).
Raj, S. R. (2022). Postural Orthostatic Tachycardia Syndrome (POTS): Pathophysiology, Diagnosis, and Management. Cleveland Clinic Journal of Medicine.
Löwe, B. et al. (2021). Trauma, PTSD, and chronic illn

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Navigating the Healthcare Maze

January 20, 2025 JoLeave a comment

A Patient’s Perspective on Medication Refills and Advocacy

As someone living with chronic conditions, I’ve learned that managing medications can be as challenging as managing the illnesses themselves. We trust healthcare providers and pharmacies to support us in maintaining our health and well-being, but when systems break down, the consequences can be painful, frustrating, and even dangerous. Recently, I experienced a frustrating series of events that highlight the need for better patient advocacy and streamlined processes in our healthcare system.

It started with a simple refill request for a medication I’ve been taking for years. What should have been routine turned into a week-long ordeal of pharmacy stock issues, doctor unavailability, and communication breakdowns. I found myself caught between pharmacies and medical offices, desperately trying to avoid withdrawal symptoms while also dealing with an unrelated infection.

I ordered a necessary medication refill on a Tuesday, as part of my routine care plan. I do it regularly every month. By Friday, (note they’d had it 3-4 days at this point, I didnt run out of meds UNTIL Friday) I went to pick it up, only to find that the pharmacy was out of stock. I was told to speak to the pharmacist if the medication was urgent, so I did. However, I was then told that in order to fill the prescription at another pharmacy, I would need a new script from my doctor. But my doctor historically wasn’t available on Fridays.

That weekend, I became unwell. I went to urgent care, where I was diagnosed with an unrelated infection. But alongside my infection, I experienced symptoms of withdrawal—symptoms caused by the missing medication. I immediately sent my doctor a message explaining what had happened and the withdrawal symptoms I was experiencing. I have been under her care since 2017, and she had approved my prescription months ago. There was nothing new or unusual about this situation—this was the same medication I had been prescribed and that I had ordered on Tuesday.

Despite this, my doctor’s office was silent. I continued to feel the effects of withdrawal, unable to eat properly or function without pain. It wasn’t until Tuesday that I finally reached out to the office, explained the situation, and asked for guidance. After some persistence, the office confirmed that they would cancel the Walgreens order and send the prescription to Walmart instead.

But still, nothing happened. By Wednesday afternoon, I received a vague message that gave me the sense that my situation was not urgent or important. (A professional way of saying, your situation is not a priority, she’ll get to it when she gets to it, and believe me, I’m not saying I’m a priority or better than anyone, I am saying MY SITUATION merited a closer than fleeting glance) I had been without my medication for almost a week, and I was truly suffering. Yet, when Walgreens finally called to let me know they had restocked the medication, I immediately called and told the doctor’s office and asked what do I do? She told me not to pick it up from them. They implied that doing so might make me look like I was trying to “beat the system.”

I was simply trying to manage my chronic illness with the medication that had been prescribed to me, a treatment I’ve been using for years. The lack of communication from my doctor’s office made the situation even more exasperating. My health was deteriorating, and yet, I was met with suspicion and delay.

Then, as it was a Friday and I thought the doctors office wasn’t going to respond because it was a Friday I made the decision to pick up the medication from Walgreens anyway, I received an unexpected message from the doctor’s office: they had approved my prescription and were sending it to Walmart. By then, I had already gotten the medication from Walgreens, I of course immediately called the office felt compelled to make it clear that I picked it up. That morning in fact. Then I said I wanted everything handled through Walmart from that point on. This wasn’t an issue of seeking special treatment; it was a matter of ensuring I had access to the medication I needed, which I had been prescribed and ordered in advance.

This experience has shed light on the urgent need for better patient advocacy, both from healthcare providers and pharmacies. Policies and protocols need to be in place to handle situations like this—where patients are at risk of going without crucial medications and the healthcare system fails to support them. When withdrawal symptoms are involved, or when a patient’s medical condition is chronic and requires ongoing treatment, a system should exist that ensures no patient is left in limbo or subjected to unnecessary delays. Communication should be clear, swift, and consistent. When a patient is suffering, there should be a concrete backup plan for emergencies, so that healthcare providers and pharmacies can act quickly to prevent harm.

Unfortunately, my experience with the healthcare system didn’t end there. After seeing how badly I was struggling, my husband urged me to see his doctor, hoping they could offer more support. His doctor is part of the same hospital network, so we made an appointment and explained the situation, he did not think changing to his doctor would make anything worse, he just felt that I deserved better treatment. To his surprise (but sadly not mine), the doctor, without even fully understanding my medical history, immediately dismissed my need for pain medications. She suggested I visit a pain clinic, something I had done years ago, only to be treated like a criminal.

The doctor seemed unconcerned with the fact that I’ve been managing chronic pain from fibromyalgia, a condition with no cure, for years. I explained that I avoid narcotics—especially opioids—due to my previous history. I have not taken opioids since my heart stopped in 2017. Yet, this doctor treated my use of a non-narcotic medication like (L) as if it were just another attempt to get high.

So, how do we move forward? What needs to change to ensure that no patient is left without the care they need?

First, healthcare systems must implement clear protocols for handling medication issues and withdrawal symptoms. Providers and pharmacies alike should be trained to recognize the urgency of these situations and act swiftly.
Second, patients need better access to advocacy resources and should never feel like they’re fighting an uphill battle to receive their prescribed treatments.
And lastly, healthcare providers should understand the real, lived experiences of their patients, especially those dealing with chronic illness.

I’m ready to get started on making these changes happen. There are many moving parts, but with enough support and awareness, we can begin to create a more compassionate, responsive healthcare system for everyone. This is about more than just medication—it’s about treating patients with dignity and respect. This fight isnt only chronic pain, its anyone who takes a prescription they will have withdrawal from. I’m hoping to start/join a community and make a difference. Until next time gang. take care of yourselves, and each other.