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10+ years of debilitating right-sided neuro-fascial symptoms, postural
Hi everyone — I’m a 22-year-old male who’s been battling debilitating, progressive, right-sided nerve pain and fascial dysfunction for over a decade. I’ve had clean lumbar, thoracic, and cervical MRIs, seen nearly every type of specialist, and have been repeatedly told it’s “in my head.” But this is real, constant, and worsening. The only thing that keeps me somewhat functional is a cocktail of caffeine, guanfacine, and glycopyrrolate, and even that barely keeps me upright.
I'm desperate for help — I need to know what this might be and who to see next.
Childhood to Now: Longstanding Asymmetry
As a child, I always had a left hip pulled forward and upward, with my right hip rotated backward and externally rotated.
My pubic bone on the left was elevated, my whole torso turned right, and I limped toward my right side, especially during sports.
Athletic but in chronic pain — wrestling, soccer, and two accidents (car + ski) in high school made things worse.
Since then, it has been nonstop — and I’ve never been the same.
Current, Daily Symptoms:
Neurological:
Debilitating pain on the right side of my head (from brow to occipital ridge)
Chronic headaches, worsened by movement or misalignment
Light sensitivity, brain fog, zoning out, distorted vision
Right jaw tightness, twitching in right eye, glute, and pectoral
Tremors in hands, POTS-like symptoms, sweating
Caffeine is the only thing that helps the brain fog
Nerve Dysfunction:
Itching, pins/needles, and numbness in right genitalia
Right ankle stiffens and tightens — often locks up
Right quad and glute twitching, with fascial recoil when out of alignment
Lower right quadrant pain and fascial tightness (especially near appendectomy site)
Post-urination dribbling, IBS symptoms, and urinary hesitancy — all improved only after starting visceral fascial therapy
Mechanical Triggers:
If my right hip is pulled backward (internally rotated), it’s like a nerve is being yanked:
My jaw clamps, my headache explodes, and my entire right side spasms
If my right hip is gently realigned forward via specific fascial PT, many symptoms temporarily vanish:
Light sensitivity, tinnitus, headache, fascial tightness, even vision
When in alignment, everything softens — but it never holds more than hours.
I have the symptoms of nerve tethering, CSF cognitive brain fog, Diagnosed with POTs (not due BPM just due to brain fog and sweatyness symptoms), I suspect I am moderately hypermobile.
What do I do?
Who do I see?
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The numbness goes to the hands as well. I have fascial tension in my right thumb and middle finger. My sensation on the right side of my body to touch is all dampened, and my feet are cold and sweaty after I, for lack of a better description, re-pinch or pull the nerves on the right side of my body. Postural alignment of the body is the only thing that helps.
I had a PT who typically works with Chiari malformation patients align my spine, which he said was twisted, using muscle energy. The brain fog immediately goes away, and much of the pain subsides — until I feel this immense pressure in the lower right side of my back. Then the muscles start twitching along the right-side chain of my body, and I am back to square one with constant, chronic headaches and pain. My fascia then tightens everywhere, just making all the other issues worse.
The tighter the fascia is and the more intensely my body twists to the right, the more all of the symptoms increase. I have experienced full saddle region numbness, an inability to sleep, and a complete lack of restful sensation. If it helps identify a trigger, I recently had a PT — while I was lying on my back — take my right leg and push it up and to the right. That movement pulled on the agitated structures at play, and my whole body on the right side defensively tightened. My feet became cold, the sweatiness in my hands and feet intensified, and the tightness just doesn’t really go away after that kind of reaction.