@muheediva01 $400 a month 2 bd, 3rd floor walk up in 1998. My neighbors next door were cocaine dealers, the rest were crazy. But still better than today’s issues.
@StevePhillipsMD Omg you found me. Currently dying of starvation from elhers and gastrointestinal issues. Fired from 3 doctors in 2 months. Fired by 5 specialists. Denied by Mayo and Emory. Running out of time.
@ncrawfordmd Currently unemployed and disabled from being dismissed due to age. HEDS/POTS/MCAS and now gastroperisis. 5 years of decline where I could have been saved.
@MastcellMadness 2 drops a day and it felt like fire tearing through my body. They said keep going and omg no no nope, after 4 days I was nearly on the floor. Took 3 weeks to eat right and still not ok. Dr. said I must be a psych case if that happened that severely. Ugh
@VoicesUnheard This is insane. I had a child out of state with a deranged boyfriend. That phone was all we had. We got her back alive and safe. I was literally 1000 miles away calling friends, to ask who could drop prepaid off.
@candlelovers12 It’s HEDS/POTS/MCAS and sadly now gastroperisis, because they ignored me for 45 yrs. Anxiety really was so complex in my case it created all these diseases. 😂
guys i’ve done a test pretending to be a patient and the report keeps being impressive.
I really think soon or later this should become the presentation letter of every patient in the world, no one can neglect now!
see just a few screenshots (the full report is much longer)
https://t.co/sle87N51s5
@gymrat_bookworm Oh my tests are just them asking if I’m sad and blaming my dislocations on my emotions. So much cheaper and now I’m disabled because of it.
119 claims. $130,320.
I just spent my lunch break tallying up my medical claims from the past year. The cost of having an Ehlers Danlos Syndrome and comorbidities/complications (Mast Cell Activation Syndrome, May-Thurner Syndrome, Migraines with aura, Craniocervical Instability, and intracranial hypertension without papilledema).
When people say, "There's nothing to do for hEDS except PT," I just shake my head now because I just assume that people are not receiving thorough workups.
@AmbrosesDrink@bioenergeticmel Holy cow is that why when I finally tried a muscle relaxer that works in the CNS I began to live again and tolerate supplements?
@ibdgirl76@YouTube Watched my child get a 3rd degree burn debried without pain control because the “burn hospital” in Augusta GA doesn’t offer it to kids. I hate this planet so much. They wanted to do full sedation for a 5 minute procedure on a child with HEDS! wtf the risk vs one Tylenol 3
How overstimulation of norepinephrine in "fear episodes" during childhood trauma and PTSD lead to dopamine dysregulation and dopaminergic neuron injury and norepinephrine depression in MECFS. There is a link....
The relationship between chronic trauma, autonomic overload, and systemic exhaustion highlights a profound neurobiological arc. Emerging evidence, including recent studies mapping central noradrenergic deficiencies, demonstrates how the catecholamine pipeline collapses under severe, prolonged stress. [1, 2, 3, 4]
This comprehensive breakdown outlines how the system moves from hyper-reactivity to burnout, mapping the path from Post-Traumatic Stress Disorder (PTSD) to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). [2, 3]
Phase 1: PTSD and Locus Coeruleus Hyper-Reactivity [5]
In the initial stages of severe trauma or prolonged stress, the brain enters a state of chronic hyperarousal. [6, 7, 8, 9]
The Amygdala-LC Feedback Loop: The amygdala perceives relentless threat and continuously floods the Locus Coeruleus (LC) with Corticotropin-Releasing Factor (CRF). [10, 11]
Noradrenaline Surge: This causes the LC—the principal noradrenergic nucleus of the brain—to switch into a high-frequency, chronic tonic firing mode. [1, 2, 12, 13]
Neuroplastic Remodeling: Over time, this over-activation changes the physical structure of the LC. Dendrites expand, making the LC hyper-reactive to even minor, non-threatening stimuli. [2, 14, 15, 16]
Phase 2: System Overload and "Collapse"
A system cannot sustain maximum output indefinitely without experiencing structural and metabolic exhaustion. [1]
[Chronic Trauma/PTSD] ──> [LC Noradrenaline Hyper-Surge] ──> [Metabolic / Oxidative Stress] │ [Systemic ME/CFS State] <── [Noradrenaline Suppression] <── [Locus Coeruleus Exhaustion]
Excitotoxicity and Oxidative Stress: The relentless synthesis and release of noradrenaline generate high levels of toxic metabolic byproducts within the LC. Because LC neurons are uniquely susceptible to oxidative stress, this prolonged demand leads to cellular strain and functional exhaustion. [17, 18]
Downregulation of Transporters: To protect itself from catecholamine toxicity, the brain drastically decreases Norepinephrine Transporter (NET) availability. This attempt to self-regulate ultimately destabilizes the entire neurotransmitter clearing system. [19]
Phase 3: The Catecholamine Depletion Cascade
Because noradrenaline and dopamine share a linked biosynthetic pathway, the exhaustion of the LC directly alters midbrain dopamine function. [20, 21]
Dopaminergic Dysregulation: The LC does not just supply noradrenaline; its widespread projections also co-release dopamine into areas like the cortex and hippocampus. When the LC loses its operational capacity, this secondary dopamine supply disappears. [1, 20]
Loss of Neuroprotection: Noradrenaline normally acts as a neuroprotective shield for midbrain dopaminergic neurons (such as those in the Substantia Nigra and VTA) by mitigating local neuroinflammation. Without it, these dopaminergic neurons face dysregulation, manifesting as severe cognitive slowing, profound anhedonia, and an inability to calculate reward-to-effort ratios. [22, 23, 24]
Adrenaline Blunting: Centrally, the lack of precursor efficiency trickles down to the peripheral sympathetic nervous system. While some patients show transient spikes in peripheral adrenaline due to panic or orthostatic stress, the central baseline is depleted, leading to a profound failure of the body's primary energetic trigger. [3, 25]
Phase 4: Suppressed Noradrenaline in ME/CFS
This neurobiological trajectory mirrors recent clinical findings in ME/CFS, illustrating a transition from a state of hyper-arousal (PTSD-like) to a state of profound central exhaustion. [3]
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Ein Freund von mir ist Psychotherapeut und hat mittlerweile mehrere ME/CFS-Patienten in Behandlung (Fokus: Pacing + Krankheitsbewältigung).
Er bestätigt, was wir alle kennen: Ärzte speisten diese nach vollkommen unzureichender somat. Diagnostik mit psychiatrischen Diagnosen ab.