When EDS Meets Menopause and Your Thermostat Breaks Completely

By Antonia @Unremarkable Me

Living with Ehlers-Danlos Syndrome (EDS) is already a full-time job—complete with surprise dislocations, fatigue that could humble a bear in hibernation, and a body that treats connective tissue like it's a loose suggestion. Now throw in perimenopause or menopause and suddenly, your internal thermostat goes full diva.

Welcome to the hormonal sequel no one warned us about—where hot flushes, loose joints, and emotional whiplash join the chronic illness circus. Let’s unpack what happens when the delicate disaster that is EDS collides with the ticking clock of menopause—and why, for many of us, it feels like the body is glitching in bold new ways.

hermostat? What Thermostat?

People with EDS are already familiar with temperature weirdness. Thanks to dysautonomia (particularly conditions like POTS), temperature regulation often malfunctions. We sweat too much—or not at all. We overheat from sitting still, or shiver under three blankets in July.

Menopause then arrives, stage left, and cranks up the chaos:

• Hot flushes that come out of nowhere and fry your brain

• Night sweats that soak the sheets

• Chills and internal thermostat swings that make layering feel like a sport

For those of us already managing poor blood flow, MCAS flares, or autonomic dysfunction, menopause doesn’t just turn up the heat—it confuses the entire system.

Collagen Crash: Estrogen’s Exit Hits Hard

Estrogen supports collagen production. So when it drops (as it does during perimenopause), those of us with collagen disorders like EDS feel it more acutely:

• Joints destabilise further

• Pelvic floor weakness increases

• Skin becomes more fragile, dry, and easily bruised

• Pain flares become more frequent—and longer lasting

If your joints already act like cling film in a wind tunnel, losing estrogen is like removing the last safety pin holding your skeleton together.

Brain Fog, Meet Fog 2.0

EDS already brings cognitive challenges: brain fog, fatigue, memory slips, and sensory overload. Perimenopause doubles down:

• Concentration fades mid-sentence

• Emotions run high (or flatline unexpectedly)

• Sleep becomes an elusive fever dream

• Energy reserves evaporate by breakfast

Trying to separate which symptoms are hormonal, which are EDS, and which are just existential confusion? Good luck—this is the Great Symptom Crossover.

MCAS and Menstrual Mayhem

Hormonal changes can fuel mast cell activation, making cycles unpredictable, symptoms flare-y, and allergic-type reactions more frequent. Common fun includes:

• Flushing and rashes during ovulation or bleeding

• Nausea and digestive flare-ups before a period

• Cramping and bloating that feel like internal betrayal

Perimenopause doesn’t always mean your periods gently fade. Often, they get heavier, longer, and far less polite before finally retiring.

Hormone Replacement Therapy (HRT): Hope with a Side of Hesitation

Can HRT help? Yes—if tailored properly. Many people with EDS report improvements in:

• Joint stability

• Sleep

• Hot flushes

• Mood swings

But caution is needed:

• Vascular fragility in some types of EDS may increase clotting risk

• MCAS patients may react poorly to certain formulations

• Those with POTS or dysautonomia may find hormones shift heart rate and BP in unpredictable ways

Real Talk: It’s Not “Just Menopause”

If someone tells you “it’s just menopause,” you have every right to raise a single eyebrow and walk out of the room dramatically (if your hips allow it). You are not being dramatic. You are navigating a complex interplay of chronic illness, neurodivergent symptom expression, hormonal upheaval, and very real systemic gaslighting.

You’re not broken. You’re evolving—albeit with more sweating, swearing, and questioning of reality than most care manuals prepared you for.

Some Coping Strategies from the Community:

• Cooling aids (vests, fans, pillow sprays)

• Heating pads and electric throws for icy limbs

• Compression gear for circulation support

• Electrolytes and hydration

• Weighted blankets for sensory regulation

• Tracking symptoms with apps or journals to identify hormonal patterns

And perhaps most importantly: permission to rest, rage, and repeat.

🌙 Final Thought: We Are Not Wilting

This stage of life isn’t the end—it’s a recalibration. It’s hard. It’s messy. But it’s also an opportunity to own your story with even more clarity.

The intersection of EDS and menopause is rarely discussed in medical texts, but it’s lived in thousands of bodies every day—often silently. So let this be a love letter to everyone who’s sweating in one moment and sobbing the next, wondering if their bones are plotting a mutiny.

You are seen. You are not alone. And no, it’s not “just your age.”

Love,

Unremarkable Me