- 1. Neurological Reset Is a Game-Changer: Stellate Ganglion Blocks (SGB)
- 2. Detox and Eliminate Your Triggers: Mold, Food, and Environmental Exposures
- 3. Strength is Your Superpower: Tendon and Muscle Remodeling Happens Dynamically
- 4. Find an Amazing DO (Osteopathic Doctor) and a True Regenerative Medicine Expert
- 5. Healing Takes Time—But It’s Possible
- Final Thoughts
Managing hypermobile Ehlers-Danlos syndrome (hEDS), mast cell activation syndrome (MCAS), postural orthostatic tachycardia syndrome (POTS), and dysautonomia is no small task. After seven years of intense trial, error, healing, and rebuilding, I’m sharing the five most critical lessons that helped me turn the corner—from bedbound to back to life.
Whether you’re newly diagnosed or years into managing these complex conditions, these strategies could be game-changers. Let’s dive in.
1. Neurological Reset Is a Game-Changer: Stellate Ganglion Blocks (SGB)
Key takeaway: If you want real improvement in dysautonomia, POTS, MCAS flares, and even medical trauma symptoms—consider a full nervous system reset.
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Stellate ganglion blocks (SGB) turned out to be one of the most effective interventions I ever tried.
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Private clinical data suggests up to a 10x improvement in symptom control among responders after SGB, especially when paired with vagus nerve support.
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After my treatments, my POTS symptoms virtually disappeared, and I needed far fewer medications globally to maintain.
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Best provider experience: Dr. Jonathann Kuo’s NeuroReset program in New York produced the longest-lasting and most profound effects for me.
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Why it matters: Chronic dysregulation of the sympathetic nervous system (think: fight-or-flight stuck “on”) worsens inflammation, mast cell degranulation, and vascular instability.
Pro tip: If you’ve been through medical trauma, PTSD, or long‑term illness, resetting your nervous system might be one of, if not the most critical step in true and lasting recovery.
2. Detox and Eliminate Your Triggers: Mold, Food, and Environmental Exposures
Key takeaway: You can’t heal if your body is still fighting invisible battles every day.
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Remove toxic exposures—mold, smoke, heavy fragrances, poor air quality, inflammatory foods.
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Food intolerance testing (especially IgG and IgA panels) helped me pinpoint hidden triggers that were setting off flares without me realizing.
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Some doctors now use plasmapheresis and EBOO (extracorporeal blood oxygenation and ozonation) to accelerate detoxification in complex MCAS and autoimmune patients.
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Even if you can’t afford those advanced options yet, simple elimination and support protocols (like charcoal, glutathione, and clean environment strategies) work.
Pro tip: Don’t just get out of a moldy environment—clean up what you bring with you. Double-bag porous items or ditch them altogether. You can’t heal while actively reacting every day.
3. Strength is Your Superpower: Tendon and Muscle Remodeling Happens Dynamically
Key takeaway: Strength isn’t just optional—it’s essential if you want to recover stability and reduce injury risk.
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Start slow: In the beginning, the goal is NOT to max out. It’s to teach tendons and collagen to adapt safely.
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Tendons remodel dynamically—but only with slow, progressive, mechanical loading.
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First focus on basic core stabilization, neutral spine training, and small joint support (especially SI joints, hips, ankles).
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Gradually progress to bodyweight, then resistance bands, then carefully structured weightlifting. You must balance strength with your flexibility – flexibility without strength through the entire range of motion is what you are fighting: move slowly, begin with eccentric holds, progress to slow, deliberate movements, particularly at the end of range of motion. Develop strength through the entire range of motion to protect yourself.
- Stabilize from the core outwards – work on the SI joint, spine, and brace extremities if necessary while working towards them. For hands, grip the floor — learn not to “hang out” in overextension. Focus on truly feeling each motion.
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Build toward compound lifts (think deadlifts, squats, modified presses)—but modified appropriately if you have spinal implants or cervical instability.
- example: I only squat heavy on a seated leg press to protect my 3 spinal implants. I have worked up to heavy lifts on bridges, and other lifts over long time frames (5+ years).
Pro tip: Protect and strengthen your tendons early. Progress is measured over multiple years, not months. Patience here pays off bigger than anywhere else. Focus on form, listening to your body’s limits and developing a system to realign, strengthen and stabilize.
Second tip: if you find yourself exhausted and with no excercise tolerance, do yourself a favor and test not only testosterone, but sex hormone binding globulin (shbg) and free testosterone (not bound to shbg). Chronic cortisol elevation (and sometimes hormonal birth control) can elevate shbg, and reduce available testosterone, tanking energy. Boron can bind shbg, and pregenenolone can replenish — always titrate with a professional, such as an experienced functional medicine physician.
4. Find an Amazing DO (Osteopathic Doctor) and a True Regenerative Medicine Expert
Key takeaway: You can’t align what’s unstable, and you can’t stabilize what’s misaligned.
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A skilled osteopathic physician (DO) with experience in hypermobility is not optional—it’s critical.
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Think of DOs like subspecialists: find the best one for hips, feet, SI joints, or cervical spine.
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Osteopathic manipulative treatment (OMT) combined with regenerative medicine (e.g., PRP, orthobiologics) creates long-term stability.
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If you’re with a DO and not improving, find another—period. For a running list of experts in the space, see the detailed guide here.
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Bad alignment creates chronic soft tissue strain, worsens nerve compression, and accelerates instability.
Pro tip: Regen medicine builds stronger tissue; a good DO keeps it aligned until your body is strong enough to hold it yourself.
5. Healing Takes Time—But It’s Possible
Key takeaway: Your recovery timeline should be measured in years, not weeks.
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When I started, I needed IV medications every 2–4 weeks, and repairs with a regenerative doctor frequently.
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Now, after full neuro reset, detox, slow strength rebuilding, and regenerative medicine support, I can go many months without needing special interventions.
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Focus on one medicine at a time, one change at a time.
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Accept that physical therapy is a forever habit—like brushing your teeth.
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Healing isn’t just physical. Address emotional trauma, medical PTSD, and self-advocacy fatigue through programs like Hoffman Process or safe trauma-informed therapy.
Pro tip: Small wins snowball into massive life change. Your body will thank you if you stay steady.
Final Thoughts:
Managing hEDS, MCAS, POTS, and dysautonomia isn’t easy—but it’s possible to reclaim your life.
The combination of nervous system reset, environmental detoxification, strength building, expert-guided alignment, and true regenerative medicine made all the difference for me—and it can for you too.
If you’re just starting out:
Start small. Build slow. Don’t lose hope.
Read more about providers and resources here, in the detailed guide to management for hEDS and MCAS.
For a personal guide on managing and healing my own case, see From Disability to Strength with Ehlers Danlos Syndrome, MCAS, and Regenerative Medicine
