Hi Friend
We all know the feeling. You "sleep" for nine hours, but you wake up feeling like you’ve been hit by a freight train. Your joints ache, your brain is wrapped in a thick fog, and your "battery" feels like it’s at 2% before you’ve even brushed your teeth.
For years, many of us are told this is simply the "nature of the beast" when living with Fibromyalgia or ME/CFS. We are told our sleep is "non-restorative" and we just have to live with it.
But what if there was a physical reason your body was struggling to stay asleep? What if your own connective tissue and immune system were working against your airway?
Today, we’re diving deep into the hidden link between hEDS, MCAS, and Sleep Apnea, and why the "standard" version of sleep apnea looks very different in our community.
1. The hEDS Connection: The "Floppy Pipe" Problem
In the general population, Obstructive Sleep Apnea (OSA) is often associated with weight or age. In the hEDS (Hypermobile Ehlers-Danlos Syndrome) community, it’s a matter of structure.
Because our collagen is "stretchy," the tissues in our throat and airway are also more compliant (or "floppy"). When we head into deep sleep and our muscles relax, those stretchy tissues can collapse far more easily than in a person with "normal" collagen.
Furthermore, many of us have high-arched palates or small jaws (micrognathia)—common hEDS traits—which leave less room for the tongue. This leads to UARS (Upper Airway Resistance Syndrome), a cousin of sleep apnea that is frequently missed on standard sleep studies but is rampant in our community.
2. The MCAS Connection: The "Internal Swelling"
If hEDS provides the "floppy" structure, MCAS (Mast Cell Activation Syndrome) provides the "congestion."
When our mast cells are reactive, they cause inflammation in the mucosal linings of our nasal passages and throat. This chronic "allergic" swelling narrows the airway. Trying to breathe through an MCAS-inflamed throat is like trying to breathe through a coffee stirrer instead of a straw. This added resistance forces the brain to "wake up" constantly to keep you breathing, preventing you from ever reaching the deep, restorative REM sleep we so desperately need.
3. The Fibro & ME/CFS Link: The "Pain-Sleep" Vortex
For those of us with Fibromyalgia and ME/CFS, sleep apnea acts like gasoline on a fire.
For Fibro: Sleep apnea triggers "alpha-delta sleep," where the brain stays in a state of hyper-vigilance. This lack of deep sleep prevents the body from repairing tissue and lowers our pain threshold. Without oxygen-rich deep sleep, our "pain volume" is turned up to the max the next day.
For ME/CFS: Every time you stop breathing for a few seconds, your body kicks into "Fight or Flight" (Sympathetic nervous system) to save you. This causes a massive spike in cortisol and adrenaline—the exact opposite of what a fragile ME/CFS nervous system needs. This "nighttime stress" can be a major driver of Post-Exertional Malaise (PEM).
4. The POTS Factor: Why we wake up "Tired but Wired"
If you have POTS (Postural Orthostatic Tachycardia Syndrome), sleep apnea causes your heart rate to fluctuate wildly overnight. Every time your oxygen drops, your heart races to compensate. You might wake up with a racing heart, night sweats, or a feeling of panic. You aren't having a nightmare—your body is struggling to maintain homeostasis.
Why Doctors Miss It (And what to look for)
Most doctors think a sleep apnea patient must be a "snoring older man." They look at a young or thin person with hEDS/Fibro and assume they are fine. But we are not the typical patient.
Signs you should look for:
Waking up with a dry mouth or a "sore throat" that disappears after an hour.
Waking up with a morning headache (a classic sign of low oxygen).
Night sweats or needing to pee multiple times a night (your heart releases a hormone when stressed that signals the kidneys to work).
Grinding your teeth (bruxism is often the body’s way of trying to pull the jaw forward to open the airway).
What can we do?
If this resonates with you, you aren't "just tired." You might be fighting for air.
Request a Sleep Study: Specifically ask for one that measures RDI (Respiratory Disturbance Index), not just AHI, to catch UARS.
MCAS Management: Stabilising mast cells with antihistamines or LDN (Low Dose Naltrexone) can sometimes reduce airway swelling.
Myofunctional Therapy: Some in our community find success in "tongue exercises" to help keep the airway open.
The "Low and Slow" approach: If you need a CPAP, remember our sensory-sensitive nervous systems may need time to adjust.
You deserve sleep that actually heals. You deserve to wake up feeling like your body was at rest, not at war.
You’ve been told your exhaustion is 'just part of it.' But if you have the hEDS/MCAS/POTS trifecta, standard advice doesn’t work for you. You need a roadmap that understands how your collagen, your mast cells, and your nervous system interact. Let’s stop the guesswork and look at your 'big picture' together. BOOK 1-1 CONSULT HERE
Stay Well
Dr Ahmed
Founder MEND CLINIC
Disclaimer: The information contained in this newsletter is provided for educational and informational purposes only and is not intended as medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read in this newsletter. Reliance on any information provided here is solely at your own risk.
