Am I a Cortisol FROG or a Cortisol PEARL?
Yet again, it’s been a while since my last post. It’s still taken me additional time to heal. I’m yet again surprised at how when you are on a downward spiral – so common with EDS – that you just don’t even see it until you are clawing your way back up.
As I made my way through the disability process – I couldn’t bring myself to share my journey. I was just too bitter, disappointed, gas-lit, and failed by the medical community. In addition, the rug was pulled out from under me since my self-worth had been tied up in my work, my abilities, my appearance and so much was taken out of my control.
I KNOW it seems that would have been the perfect time to share! How many people would benefit from learning how to also navigate the disability process? I was also wrapped up in that guilt as well.
But even with all of the doctor’s appointments to build my case file – recognition of many of my conditions went unnoticed and thus also untreated.
But it’s crazy – why would they be unnoticed? They are listed as comorbidities of EDS/ Lipedema.
I know the “Normals” out there would believe that I am being over-dramatic when I say that I know I’ll die because a doctor will someday not listen and do the wrong thing. Whereas I know YOU know, I’m being completely honest. The “Normals” out there also ask me nonsensical questions like “Where do you come up with these weird diets?”. Like I have a choice? I don’t even comprehend what a Normal thinks the alternative is….
But I’ve finally identified (at least some of – because who knows how much more has gone unnoticed) a number of health issues that are currently plaguing me – and they are finally being addressed. Albeit through some typically unconventional means.
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Previous to all this – I had been a loud-mouthed strong advocate for EDS and Lipedema patients. Built one of the largest Lipedema groups in the US. I counselled women on how to approach and speak with their doctors – how to obtain appropriate diagnosis and treatment.
Then, in my own life, I turned Fat, Ragged, Old, Grey-haired, and Stupid. A FROGS. I was unable and incapable of fighting for what I knew was true in the doctor’s office. Doctor’s took one look at me and DECIDED they knew what was going on. Usually without any testing. One doctor confused the condition Lipidemia for Lipedema – and boy did he give me a scolding for not being on a statin! At an ER visit with a different (but new to me) doctor, I had such chest pain, I could not take a full breath. I was, in fact, doubled over in pain, and could only shuffle my feet as I tried to walk. I later read the doctor’s notes of the appointment, and he stated that I “Appeared in no Distress”. I think you missed the mark, Doc!
Who will speak for us, when we have no voice?
At the moment – I have no answer for that. For me, I’ve identified a friend who has been attending my more recent doctor’s appointment to be an advocate for me. When I’m clearer thinking, I review the important points I need to get across to the doctor. I still use the Appointment Checklist I’ve used for years that outlines the 3 most important things I need to speak to the doctor about – and my friend has that to rely on and to take notes. I also put together a Health Care binder that includes my Healthcare Management Plan that she can reference.
I don’t know about you, but now when I’m in a Doctor’s office – especially a new doctor who doesn’t know how diligent I am – that “fight or flight” response just takes over. Anxiety rises and therefore my BP rises. All thoughts become mush. The doc enters and gives me the FROGS once over. I’m done for.
“Your Blood Pressure is High and Uncontrolled!”
Doesn’t matter that I read off the BP readings I’ve received at home…. I’m a FROGS and of course must not know how to run a BP cuff. (Even though THEY are the ones who didn’t provide time to relax after putting me in the room – they use the wrong size cuff – and use an automated machine that over-inflates. That one reading is now gospel.)
So if things are already going this badly in the scheduled doctor’s office, where they have all my notes (that are now tainted with “high blood pressure readings”) – a doctor who supposedly knows me – what will happen when I’m transported unconscious to the hospital?
I suppose I’ll be treated like any other of the other FROGS out there.
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But I have a lot to talk about and to share, once again, regarding my health. Especially because I think these insights and revelations will be something important to YOU as well. I have so much to talk about, in fact, it’s difficult to know where to begin.
So let’s begin with some of the things we already knew:
- Lipedema does not respond to calorie restrictive diets or exercise.
- Calories In DOES NOT equal calories out. There are too many variables – just the mention of “Metabolism” proves that the equation is not true – and lighting a piece of food on fire is the stupidest “proof” of how that piece of food is going to react in the body.
- Food Sensitivities can lead to weight gain (and pain and inflammation in Lipedema)
- EDSers are often diagnosed with “anxiety” but EDS patients are not mentally anxious—they’re physically overwhelmed.
- Both Lipedema and EDS have a lot of pain associated with those conditions.
- Pain leads to stress which often locks you into “fight or flight” and a Lipedema or EDS body is unable to transition into “rest and digest”.
In a Normal person, food sensitivities can lead to weight gain, as outlined in this flow:
Controlling histamines and improving gut flora have all been focuses of my Facebook group (Lipedema & Food Sensitivities) and blog. And we’ve touched on Hormone balance and Thyroid function numerous times as well.
Cortisol often came up in discussions, but (in my mind, in hindsight) was really just glossed over – “Oh control your stress” – “Do some yoga to keep your cortisol low” – “Mindfulness is important.”
It seemed there wasn’t really anything you could DO about cortisol… I don’t know about you – but I’m wound pretty tight. Yoga and mindfulness exercises would make me even more tense when these elusive expectations of LOWERING stress were not achieved. But I COULD figure out how to control my food sensitivities (and gut flora, and thyroid function) – so I concentrated there instead.
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In Sept 2024, my endocrinologist broke the news to me that my A1C was in the pre-diabetic range, as well as my fasting glucose. This was pretty shocking to me… because you all know how diligent I am with my food! Granted, I was a little lax for maybe a year…. But seriously? A year of being lax?
She gave me a list of seemingly crazy things to do.
(I’m giving you the final list that was amended in April 2025)
- Protein/fat/fiber the major components of diet (Meaning Keto)
- See sunrise with bare eyes
- Get vitamin D through sun exposure
- Eat 30g protein plus fat (no carbs) within 1 hour of rising
- Restrict eating window to 12 hours or less
- Do not eat or drink anything with calories within 3 hours of bedtime
- Make dinner the smallest meal of the day
- Avoid blue light after sundown
- Strength training exercises
- Cold exposure (walks in cold ambient air, cold dips, cold showers, face plunge, etc.
She kept telling me that my circadian rhythm was off. I didn’t understand that – because I’d wake naturally around 6-6:30 daily – so why would she accuse me of this? And even more so – how would seeing sunrise, eating within an hour of waking or avoiding blue light after sundown impact this AT ALL?
It was because she could tell that my cortisol level – which is impacted by circadian rhythm – was off. (Well no kidding – as I said above with the Food sensitivities – I knew my cortisol was high and impacted by food sensitivities.) But circadian rhythm ALSO impacts cortisol! And how do you know when cortisol is high?
- Trouble falling asleep or waking too early
- Wired but tired feeling (anxiety, jittery)
- Midsection weight gain (despite good diet)
- Spikes in BP, glucose, or HR under stress
- Low morning energy or brain fog
- Sensitivity to light, noise, or blood sugar changes
Does that not describe an EDS/ Lipedema patient to a T?
EDS and Lipedema cause chronic pain and systemic inflammation, both of which are direct triggers for cortisol release. Autonomic dysfunction (like POTS – which is common in EDS and Lipedema) further dysregulates the hypothalamic-pituitary-adrenal (HPA) axis, which controls your stress hormones. Additional issues such as sleep disruption, digestive symptoms, and the emotional strain of managing long-term misunderstood illnesses compound the cortisol load.
Chronically high cortisol (from stress, pain, lack of sleep, or inflammation) raises insulin and leptin and therefore glucose and can blunt weight loss. Cortisol is trying to manage inflammation and help you function in a body that’s in distress. But when cortisol is constantly high, it impairs glucose control, blocks weight loss, worsens sleep, breaks down muscle, and even fuels more inflammation—a vicious cycle. Cortisol tells the liver to dump glucose into your bloodstream to fuel a “fight or flight” response. Stress literally stalls digestion by shifting your nervous system into “fight or flight” instead of “rest and digest.” We get stuck in the “fight or flight” and are unable to switch to “rest and digest”.
Cortisol-driven symptoms (racing heart, muscle tension, GI distress, lightheadedness) mimic anxiety, but many patients with EDS/ Lipedema are not mentally anxious—they’re physically overwhelmed. The anxiety is reactive, not causative. This is dysautonomia, not a psychological disorder. And we KNOW that dysautonomia is a comorbidity of EDS and Lipedema! WHY haven’t docs figured out we have issues with CORTISOL and all of this IS NOT OUR FAULT?
So, in comes managing your circadian rhythm:
Morning infrared and early blue light of the rising sun signals daytime to your brain and jumpstarts your body’s clock. The wavelengths in morning light help regulate your circadian rhythm by suppressing melatonin production and promoting alertness. You do not need to see the sun itself (especially if it’s hidden behind trees, buildings, etc.). But you want to be outside with no glass between or glasses on and face the horizon so that your eyes are picking up the natural change in light intensity, even if it’s cloudy or the sun isn’t visible.
Even on cloudy days, the light intensity outside is 100–1,000x stronger than indoor light.
Clouds reduce brightness but don’t block the wavelengths your brain and body need to set your circadian clock.
You want to SEE Blue light during the day – and BLOCK blue light during the night (hence all of the blue blocking glasses and potential filters for TV’s, computers and cell phones). The light’s wavelengths tells your eyes which tells the rest of your body if it’s supposed to be awake or asleep and manufactures the appropriate hormones for the time period.
That time that I went to the emergency room in so much pain? 5 days after my emergency room visit, I think I figured out what the pain in my chest was – seems it was a Charlie horse in my chest (! WHAT?!), and AFTER 5 DAYS(!), that muscle tension finally relaxed (for brief periods of time at first until it was triggered again over an additional 2 days ). Well – all-in-all I didn’t leave the house in a month and a half from the flu that initially triggered the Charlie horse until I was completely over it all. It was simply just too painful to move. So – no sunlight for over a month – in the middle of summer! The extreme pain I had, no doubt increased cortisol, which dumped glucose, which increased insulin and leptin…. And I was stuck in “fight or flight” for that month and a half – no “rest and digest” in sight. No wonder my circadian rhythm was off and all my levels were high!
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Where Do You Go from Here to Control Cortisol?
You don’t need to “eliminate stress” (impossible)—instead, the goal is to buffer the effects of stress and signal safety to your body:
- Early daylight exposure
- Eat 30 g Protein within 1 hour of waking (signals safety to the body)
- Magnesium glycinate at night (calming, supports sleep + reduces cortisol)
- Holy Basil (Tulsi) tea (adaptogen)
- GABA/l-theanine (either through food or supplements, can help tone down the stress response)
- Gentle movement like stretching, walking, lymphatic massage for Lipedema
- Nervous system retraining (DNRS, Somatic Experiencing, or safe grounding exercises)
- Targeted anti-inflammatory support (turmeric, omega-3s, and nutrient-dense Keto meals with your tolerable vegetables)
- Low Dose Naltrexone (the HPA axis — which governs cortisol production — is influenced by endorphins and stress signaling, LDN may indirectly affect cortisol levels.)
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So far, I’ve incorporated most of the list my endocrinologist gave me, I’ve been working on blue blockers at night, and I’ve incorporated Holy Basil tea and just re-started LDN. Still working on others – it all takes time! A bit of time!
But already I’ve had improvements – my A1C has gone from 6.1 to 5.6, and fasting glucose from 112 to 98. (This means I’m no longer in the Prediabetic range!) I’ve started actually having energy in the morning! And I’ve almost gotten back to my forever optimistic mood… that apparently hadn’t been forever.
And since I’ve done it – I believe YOU can too!
Let’s turn us FROGS back into the PEARLs – Poised, Experienced, Ageless, Radiant Ladies we’re meant to be! I’m here cheering you on!
I tell ya, the next doc won’t see me coming!
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