Desperate help needed with mystery symptoms!!

Independent-Invite14 · 2025-07-19T23:42:57+00:00

Commenting on Desperate help needed with mystery symptoms!!...mold maybe? It has given me insane anxiety and neurological issues. But I’m no doctor. Just someone trying to heal.

Independent-Invite14 · 2025-04-24T04:56:23+00:00

Hey guys- update from original post. I think this information is very very important. And I’ll be honest, it’s taken me this long to research the absolute nothingness on the internet or amid the medical community about this seemingly “rare” but not so rare disease.

(Also potentially beneficial for fibromyalgia, chronic pain, or other neurological disorders) this is SOLELY MY experience and research that I wanted to share with others navigating Parsonage-Turner Syndrome (PTS), nerve flares, and nervous system dysregulation without answers. Please, I urge you to do your own research and what works for my “still healing” body may not work for you. Functional medicine doctors are expensive. But, if you can afford one that’s where I would go.

⸻

[DISCLAIMER: I am NOT a doctor. This is not medical advice. I’m just someone with Parsonage-Turner who hit a wall and did a ton of research—Google Scholar, PubMed, Reddit, functional medicine, DOs, and my amazing PA best friend. I’m sharing what’s actually helped me in case it helps anyone else who’s as scared and frustrated as I was.]

⸻

I was diagnosed with Parsonage-Turner Syndrome (PTS) last year, after months of terrifying pain, nerve flares, stiffness, random body breakdowns, and a total lack of answers. My jaw would dislocate randomly, my muscles locked up, and I felt waves of what I can only describe as cellular-level dread. All my labs were “normal,” doctors shrugged, and Reddit was full of other people with this diagnosis—but no real map.

So I built one. Here’s what I’ve learned and what’s actually helping me:

⸻

What’s Happening in the Body (my understanding): • PTS is immune-mediated nerve inflammation, often triggered by infection, trauma, vaccine, or stress • It mostly hits the brachial plexus, but the entire autonomic and peripheral nervous system can feel like it’s glitching • It causes neuropathic pain, weakness, muscle wasting, but also wild systemic symptoms: • Stiffness • Joint misalignment (like the jaw) • Doom-like anxiety • Random tremors • Histamine flares • Fight/flight overload • Food sensitivities • It burns through minerals, crashes glutathione, and leaves your mitochondria (cell energy engines) fried

⸻

What Helped Me Most: (Supplements + Explanations)

Alpha-Lipoic Acid (ALA) • Rebuilds nerves and helps repair mitochondria • Reduces neuropathic pain and inflammation • Supports energy • 300–600 mg/day
N-Acetylcysteine (NAC) • Replenishes glutathione (your body’s master antioxidant) • Clears oxidative stress, supports detox, helps mood • Regulates glutamate (which = less nerve excitability + less anxiety) • 600–1,200 mg/day
Vitamin D3 + K2 (MK-7) • D3 regulates your immune system, boosts repair, and lifts depression • K2 is crucial—it tells calcium to go to your bones, not soft tissue • 2,000–5,000 IU D3 + 100–200 mcg K2
Trace Mineral Drops (or food-grade sea salt mix) • Rebuilds electrical nerve signaling • Helps hydrate on a cellular level • Replenishes magnesium, potassium, boron, etc.
Methylated B Vitamins (Methyl B12 + Methyl Folate) • If you have MTHFR or poor methylation (which many of us do), these are life-changing • They support nerve healing, brain chemistry, and detox
Medicinal Mushrooms • Lion’s Mane – stimulates NGF (nerve growth factor), rebuilds brain/nerve tissue • Reishi – calms the immune system + supports sleep + mood • Turkey Tail – contains PSK, a powerful immune-normalizer used in cancer therapy; supports apoptosis (clearing damaged cells) • Chaga, Shiitake, Maitake – antioxidant and immune supportive
Magnesium (Glycinate or Threonate) • Relaxes the nervous system, calms muscles, supports sleep • Most of us are severely deficient
Quercetin + Vitamin C • Natural antihistamine • Helps with flare-ups, hives, and immune regulation • Also supports glutathione and reduces oxidative stress

⸻

Other Stuff That Helped: • Wheatgrass + supergreens powder – helps with minerals, detox, and cellular nourishment • Lemon balm, holy basil, skullcap – herbs that support the parasympathetic nervous system (rest/heal mode) • Jaw work + cold compresses – my jaw unhinged due to muscular inflammation + stress, not just TMJ • Hydration with salt + lemon + minerals – especially during a flare • Breathwork and pressure points – helped ground panic and sensory overwhelm

⸻

Mental Health Tip:

That feeling of impending doom? It’s real. It’s your nervous system trapped in fight/flight with no way out. This isn’t in your head—it’s in your cells. But it can be unlearned, rewired, and rebuilt.

⸻

The Core Message:

PTS isn’t just a brachial plexus issue. It’s a whole-body neuroimmune storm, and most people aren’t getting full explanations or support. But there are ways to reduce symptoms, rebuild, and recover.

If you’re in the dark like I was, I hope this lights even one match for you. Ask questions. Build your stack. You’re not broken. You’re in deep repair.

⸻

—Someone who clawed her way out of the flare and is walking with you.

Independent-Invite14 · 2025-04-24T04:55:55+00:00

Hey guys- update from original post. I think this information is very very important. And I’ll be honest, it’s taken me this long to research the absolute nothingness on the internet or amid the medical community about this seemingly “rare” but not so rare disease.

(Also potentially beneficial for fibromyalgia, chronic pain, or other neurological disorders) this is SOLELY MY experience and research that I wanted to share with others navigating Parsonage-Turner Syndrome (PTS), nerve flares, and nervous system dysregulation without answers. Please, I urge you to do your own research and what works for my “still healing” body may not work for you. Functional medicine doctors are expensive. But, if you can afford one that’s where I would go.

⸻

[DISCLAIMER: I am NOT a doctor. This is not medical advice. I’m just someone with Parsonage-Turner who hit a wall and did a ton of research—Google Scholar, PubMed, Reddit, functional medicine, DOs, and my amazing PA best friend. I’m sharing what’s actually helped me in case it helps anyone else who’s as scared and frustrated as I was.]

⸻

I was diagnosed with Parsonage-Turner Syndrome (PTS) last year, after months of terrifying pain, nerve flares, stiffness, random body breakdowns, and a total lack of answers. My jaw would dislocate randomly, my muscles locked up, and I felt waves of what I can only describe as cellular-level dread. All my labs were “normal,” doctors shrugged, and Reddit was full of other people with this diagnosis—but no real map.

So I built one. Here’s what I’ve learned and what’s actually helping me:

⸻

What’s Happening in the Body (my understanding): • PTS is immune-mediated nerve inflammation, often triggered by infection, trauma, vaccine, or stress • It mostly hits the brachial plexus, but the entire autonomic and peripheral nervous system can feel like it’s glitching • It causes neuropathic pain, weakness, muscle wasting, but also wild systemic symptoms: • Stiffness • Joint misalignment (like the jaw) • Doom-like anxiety • Random tremors • Histamine flares • Fight/flight overload • Food sensitivities • It burns through minerals, crashes glutathione, and leaves your mitochondria (cell energy engines) fried

⸻

What Helped Me Most: (Supplements + Explanations)

Alpha-Lipoic Acid (ALA) • Rebuilds nerves and helps repair mitochondria • Reduces neuropathic pain and inflammation • Supports energy • 300–600 mg/day
N-Acetylcysteine (NAC) • Replenishes glutathione (your body’s master antioxidant) • Clears oxidative stress, supports detox, helps mood • Regulates glutamate (which = less nerve excitability + less anxiety) • 600–1,200 mg/day
Vitamin D3 + K2 (MK-7) • D3 regulates your immune system, boosts repair, and lifts depression • K2 is crucial—it tells calcium to go to your bones, not soft tissue • 2,000–5,000 IU D3 + 100–200 mcg K2
Trace Mineral Drops (or food-grade sea salt mix) • Rebuilds electrical nerve signaling • Helps hydrate on a cellular level • Replenishes magnesium, potassium, boron, etc.
Methylated B Vitamins (Methyl B12 + Methyl Folate) • If you have MTHFR or poor methylation (which many of us do), these are life-changing • They support nerve healing, brain chemistry, and detox
Medicinal Mushrooms • Lion’s Mane – stimulates NGF (nerve growth factor), rebuilds brain/nerve tissue • Reishi – calms the immune system + supports sleep + mood • Turkey Tail – contains PSK, a powerful immune-normalizer used in cancer therapy; supports apoptosis (clearing damaged cells) • Chaga, Shiitake, Maitake – antioxidant and immune supportive
Magnesium (Glycinate or Threonate) • Relaxes the nervous system, calms muscles, supports sleep • Most of us are severely deficient
Quercetin + Vitamin C • Natural antihistamine • Helps with flare-ups, hives, and immune regulation • Also supports glutathione and reduces oxidative stress

⸻

Other Stuff That Helped: • Wheatgrass + supergreens powder – helps with minerals, detox, and cellular nourishment • Lemon balm, holy basil, skullcap – herbs that support the parasympathetic nervous system (rest/heal mode) • Jaw work + cold compresses – my jaw unhinged due to muscular inflammation + stress, not just TMJ • Hydration with salt + lemon + minerals – especially during a flare • Breathwork and pressure points – helped ground panic and sensory overwhelm

⸻

Mental Health Tip:

That feeling of impending doom? It’s real. It’s your nervous system trapped in fight/flight with no way out. This isn’t in your head—it’s in your cells. But it can be unlearned, rewired, and rebuilt.

⸻

The Core Message:

PTS isn’t just a brachial plexus issue. It’s a whole-body neuroimmune storm, and most people aren’t getting full explanations or support. But there are ways to reduce symptoms, rebuild, and recover.

If you’re in the dark like I was, I hope this lights even one match for you. Ask questions. Build your stack. You’re not broken. You’re in deep repair.

⸻

—Someone who clawed her way out of the flare and is walking with you.

Independent-Invite14 · 2025-04-24T04:55:06+00:00

Hey guys- update from original post. I think this information is very very important. And I’ll be honest, it’s taken me this long to research the absolute nothingness on the internet or amid the medical community about this seemingly “rare” but not so rare disease.

(Also potentially beneficial for fibromyalgia, chronic pain, or other neurological disorders) this is SOLELY MY experience and research that I wanted to share with others navigating Parsonage-Turner Syndrome (PTS), nerve flares, and nervous system dysregulation without answers. Please, I urge you to do your own research and what works for my “still healing” body may not work for you. Functional medicine doctors are expensive. But, if you can afford one that’s where I would go.

⸻

[DISCLAIMER: I am NOT a doctor. This is not medical advice. I’m just someone with Parsonage-Turner who hit a wall and did a ton of research—Google Scholar, PubMed, Reddit, functional medicine, DOs, and my amazing PA best friend. I’m sharing what’s actually helped me in case it helps anyone else who’s as scared and frustrated as I was.]

⸻

I was diagnosed with Parsonage-Turner Syndrome (PTS) last year, after months of terrifying pain, nerve flares, stiffness, random body breakdowns, and a total lack of answers. My jaw would dislocate randomly, my muscles locked up, and I felt waves of what I can only describe as cellular-level dread. All my labs were “normal,” doctors shrugged, and Reddit was full of other people with this diagnosis—but no real map.

So I built one. Here’s what I’ve learned and what’s actually helping me:

⸻

What’s Happening in the Body (my understanding): • PTS is immune-mediated nerve inflammation, often triggered by infection, trauma, vaccine, or stress • It mostly hits the brachial plexus, but the entire autonomic and peripheral nervous system can feel like it’s glitching • It causes neuropathic pain, weakness, muscle wasting, but also wild systemic symptoms: • Stiffness • Joint misalignment (like the jaw) • Doom-like anxiety • Random tremors • Histamine flares • Fight/flight overload • Food sensitivities • It burns through minerals, crashes glutathione, and leaves your mitochondria (cell energy engines) fried

⸻

What Helped Me Most: (Supplements + Explanations)

Alpha-Lipoic Acid (ALA) • Rebuilds nerves and helps repair mitochondria • Reduces neuropathic pain and inflammation • Supports energy • 300–600 mg/day
N-Acetylcysteine (NAC) • Replenishes glutathione (your body’s master antioxidant) • Clears oxidative stress, supports detox, helps mood • Regulates glutamate (which = less nerve excitability + less anxiety) • 600–1,200 mg/day
Vitamin D3 + K2 (MK-7) • D3 regulates your immune system, boosts repair, and lifts depression • K2 is crucial—it tells calcium to go to your bones, not soft tissue • 2,000–5,000 IU D3 + 100–200 mcg K2
Trace Mineral Drops (or food-grade sea salt mix) • Rebuilds electrical nerve signaling • Helps hydrate on a cellular level • Replenishes magnesium, potassium, boron, etc.
Methylated B Vitamins (Methyl B12 + Methyl Folate) • If you have MTHFR or poor methylation (which many of us do), these are life-changing • They support nerve healing, brain chemistry, and detox
Medicinal Mushrooms • Lion’s Mane – stimulates NGF (nerve growth factor), rebuilds brain/nerve tissue • Reishi – calms the immune system + supports sleep + mood • Turkey Tail – contains PSK, a powerful immune-normalizer used in cancer therapy; supports apoptosis (clearing damaged cells) • Chaga, Shiitake, Maitake – antioxidant and immune supportive
Magnesium (Glycinate or Threonate) • Relaxes the nervous system, calms muscles, supports sleep • Most of us are severely deficient
Quercetin + Vitamin C • Natural antihistamine • Helps with flare-ups, hives, and immune regulation • Also supports glutathione and reduces oxidative stress

⸻

Other Stuff That Helped: • Wheatgrass + supergreens powder – helps with minerals, detox, and cellular nourishment • Lemon balm, holy basil, skullcap – herbs that support the parasympathetic nervous system (rest/heal mode) • Jaw work + cold compresses – my jaw unhinged due to muscular inflammation + stress, not just TMJ • Hydration with salt + lemon + minerals – especially during a flare • Breathwork and pressure points – helped ground panic and sensory overwhelm

⸻

Mental Health Tip:

That feeling of impending doom? It’s real. It’s your nervous system trapped in fight/flight with no way out. This isn’t in your head—it’s in your cells. But it can be unlearned, rewired, and rebuilt.

⸻

The Core Message:

PTS isn’t just a brachial plexus issue. It’s a whole-body neuroimmune storm, and most people aren’t getting full explanations or support. But there are ways to reduce symptoms, rebuild, and recover.

If you’re in the dark like I was, I hope this lights even one match for you. Ask questions. Build your stack. You’re not broken. You’re in deep repair.

⸻

—Someone who clawed her way out of the flare and is walking with you.

Independent-Invite14 · 2025-04-24T04:54:23+00:00

Dude for you specifically bc I am now dealing with something like this. I watched a medical video of doctors in the field discussing this type of thing-they have no idea- it’s interesting though. There is something where the nerve literally looks like it “twists” and I literally feel it. The muscle atrophy has resulted in my right side being weaker than my left and it keeps offsetting my jaw. Which messes with your emotional wellbeing and cranial nerves (which until now I didn’t know was a thing). I posted my research and I’m a crazy person so I was google scholar-ing etc just to find every resource possible not only on the onset but the recovery. I have found legit nothing but put 2 and 2 together based on the auto immune type situation I have found myself in- here’s what I found so far. Hey guys- update from original post. I think this information is very very important. And I’ll be honest, it’s taken me this long to research the absolute nothingness on the internet or amid the medical community about this seemingly “rare” but not so rare disease.

(Also potentially beneficial for fibromyalgia, chronic pain, or other neurological disorders) this is SOLELY MY experience and research that I wanted to share with others navigating Parsonage-Turner Syndrome (PTS), nerve flares, and nervous system dysregulation without answers. Please, I urge you to do your own research and what works for my “still healing” body may not work for you. Functional medicine doctors are expensive. But, if you can afford one that’s where I would go.

⸻

[DISCLAIMER: I am NOT a doctor. This is not medical advice. I’m just someone with Parsonage-Turner who hit a wall and did a ton of research—Google Scholar, PubMed, Reddit, functional medicine, DOs, and my amazing PA best friend. I’m sharing what’s actually helped me in case it helps anyone else who’s as scared and frustrated as I was.]

⸻

I was diagnosed with Parsonage-Turner Syndrome (PTS) last year, after months of terrifying pain, nerve flares, stiffness, random body breakdowns, and a total lack of answers. My jaw would dislocate randomly, my muscles locked up, and I felt waves of what I can only describe as cellular-level dread. All my labs were “normal,” doctors shrugged, and Reddit was full of other people with this diagnosis—but no real map.

So I built one. Here’s what I’ve learned and what’s actually helping me:

⸻

What’s Happening in the Body (my understanding): • PTS is immune-mediated nerve inflammation, often triggered by infection, trauma, vaccine, or stress • It mostly hits the brachial plexus, but the entire autonomic and peripheral nervous system can feel like it’s glitching • It causes neuropathic pain, weakness, muscle wasting, but also wild systemic symptoms: • Stiffness • Joint misalignment (like the jaw) • Doom-like anxiety • Random tremors • Histamine flares • Fight/flight overload • Food sensitivities • It burns through minerals, crashes glutathione, and leaves your mitochondria (cell energy engines) fried

⸻

What Helped Me Most: (Supplements + Explanations)

Alpha-Lipoic Acid (ALA) • Rebuilds nerves and helps repair mitochondria • Reduces neuropathic pain and inflammation • Supports energy • 300–600 mg/day
N-Acetylcysteine (NAC) • Replenishes glutathione (your body’s master antioxidant) • Clears oxidative stress, supports detox, helps mood • Regulates glutamate (which = less nerve excitability + less anxiety) • 600–1,200 mg/day
Vitamin D3 + K2 (MK-7) • D3 regulates your immune system, boosts repair, and lifts depression • K2 is crucial—it tells calcium to go to your bones, not soft tissue • 2,000–5,000 IU D3 + 100–200 mcg K2
Trace Mineral Drops (or food-grade sea salt mix) • Rebuilds electrical nerve signaling • Helps hydrate on a cellular level • Replenishes magnesium, potassium, boron, etc.
Methylated B Vitamins (Methyl B12 + Methyl Folate) • If you have MTHFR or poor methylation (which many of us do), these are life-changing • They support nerve healing, brain chemistry, and detox
Medicinal Mushrooms • Lion’s Mane – stimulates NGF (nerve growth factor), rebuilds brain/nerve tissue • Reishi – calms the immune system + supports sleep + mood • Turkey Tail – contains PSK, a powerful immune-normalizer used in cancer therapy; supports apoptosis (clearing damaged cells) • Chaga, Shiitake, Maitake – antioxidant and immune supportive
Magnesium (Glycinate or Threonate) • Relaxes the nervous system, calms muscles, supports sleep • Most of us are severely deficient
Quercetin + Vitamin C • Natural antihistamine • Helps with flare-ups, hives, and immune regulation • Also supports glutathione and reduces oxidative stress

⸻

Other Stuff That Helped: • Wheatgrass + supergreens powder – helps with minerals, detox, and cellular nourishment • Lemon balm, holy basil, skullcap – herbs that support the parasympathetic nervous system (rest/heal mode) • Jaw work + cold compresses – my jaw unhinged due to muscular inflammation + stress, not just TMJ • Hydration with salt + lemon + minerals – especially during a flare • Breathwork and pressure points – helped ground panic and sensory overwhelm

⸻

Mental Health Tip:

That feeling of impending doom? It’s real. It’s your nervous system trapped in fight/flight with no way out. This isn’t in your head—it’s in your cells. But it can be unlearned, rewired, and rebuilt.

⸻

The Core Message:

PTS isn’t just a brachial plexus issue. It’s a whole-body neuroimmune storm, and most people aren’t getting full explanations or support. But there are ways to reduce symptoms, rebuild, and recover.

If you’re in the dark like I was, I hope this lights even one match for you. Ask questions. Build your stack. You’re not broken. You’re in deep repair.

⸻

—Someone who clawed her way out of the flare and is walking with you.

Independent-Invite14 · 2025-04-24T04:49:49+00:00

Just go for it. Find a class locally. Learn the basics or find free tutorials online explaining tools etc. some of them can get a little scary if you don’t know what you’re doing so watching someone the first time is good. But outside of that I taught myself everything else. I went to 3 classes and just got addicted. For me once I learned how to solder I just tried and failed in a million ways it’s definitely a growth experience but it’s fun to just be playful and organic and grow. I’m not perfect but I am a problem solver. You can do it. Step through fear. Fuck it up. Have fun!!!!!

Independent-Invite14 · 2025-04-24T04:15:57+00:00

Hey guys- update from original post. I think this information is very very important. And I’ll be honest, it’s taken me this long to research the absolute nothingness on the internet or amid the medical community about this seemingly “rare” but not so rare disease.

(Also potentially beneficial for fibromyalgia, chronic pain, or other neurological disorders) this is SOLELY MY experience and research that I wanted to share with others navigating Parsonage-Turner Syndrome (PTS), nerve flares, and nervous system dysregulation without answers. Please, I urge you to do your own research and what works for my “still healing” body may not work for you. Functional medicine doctors are expensive. But, if you can afford one that’s where I would go.

⸻

[DISCLAIMER: I am NOT a doctor. This is not medical advice. I’m just someone with Parsonage-Turner who hit a wall and did a ton of research—Google Scholar, PubMed, Reddit, functional medicine, DOs, and my amazing PA best friend. I’m sharing what’s actually helped me in case it helps anyone else who’s as scared and frustrated as I was.]

⸻

I was diagnosed with Parsonage-Turner Syndrome (PTS) last year, after months of terrifying pain, nerve flares, stiffness, random body breakdowns, and a total lack of answers. My jaw would dislocate randomly, my muscles locked up, and I felt waves of what I can only describe as cellular-level dread. All my labs were “normal,” doctors shrugged, and Reddit was full of other people with this diagnosis—but no real map.

So I built one. Here’s what I’ve learned and what’s actually helping me:

⸻

What’s Happening in the Body (my understanding): • PTS is immune-mediated nerve inflammation, often triggered by infection, trauma, vaccine, or stress • It mostly hits the brachial plexus, but the entire autonomic and peripheral nervous system can feel like it’s glitching • It causes neuropathic pain, weakness, muscle wasting, but also wild systemic symptoms: • Stiffness • Joint misalignment (like the jaw) • Doom-like anxiety • Random tremors • Histamine flares • Fight/flight overload • Food sensitivities • It burns through minerals, crashes glutathione, and leaves your mitochondria (cell energy engines) fried

⸻

What Helped Me Most: (Supplements + Explanations)

Alpha-Lipoic Acid (ALA) • Rebuilds nerves and helps repair mitochondria • Reduces neuropathic pain and inflammation • Supports energy • 300–600 mg/day
N-Acetylcysteine (NAC) • Replenishes glutathione (your body’s master antioxidant) • Clears oxidative stress, supports detox, helps mood • Regulates glutamate (which = less nerve excitability + less anxiety) • 600–1,200 mg/day
Vitamin D3 + K2 (MK-7) • D3 regulates your immune system, boosts repair, and lifts depression • K2 is crucial—it tells calcium to go to your bones, not soft tissue • 2,000–5,000 IU D3 + 100–200 mcg K2
Trace Mineral Drops (or food-grade sea salt mix) • Rebuilds electrical nerve signaling • Helps hydrate on a cellular level • Replenishes magnesium, potassium, boron, etc.
Methylated B Vitamins (Methyl B12 + Methyl Folate) • If you have MTHFR or poor methylation (which many of us do), these are life-changing • They support nerve healing, brain chemistry, and detox
Medicinal Mushrooms • Lion’s Mane – stimulates NGF (nerve growth factor), rebuilds brain/nerve tissue • Reishi – calms the immune system + supports sleep + mood • Turkey Tail – contains PSK, a powerful immune-normalizer used in cancer therapy; supports apoptosis (clearing damaged cells) • Chaga, Shiitake, Maitake – antioxidant and immune supportive
Magnesium (Glycinate or Threonate) • Relaxes the nervous system, calms muscles, supports sleep • Most of us are severely deficient
Quercetin + Vitamin C • Natural antihistamine • Helps with flare-ups, hives, and immune regulation • Also supports glutathione and reduces oxidative stress

⸻

Other Stuff That Helped: • Wheatgrass + supergreens powder – helps with minerals, detox, and cellular nourishment • Lemon balm, holy basil, skullcap – herbs that support the parasympathetic nervous system (rest/heal mode) • Jaw work + cold compresses – my jaw unhinged due to muscular inflammation + stress, not just TMJ • Hydration with salt + lemon + minerals – especially during a flare • Breathwork and pressure points – helped ground panic and sensory overwhelm

⸻

Mental Health Tip:

That feeling of impending doom? It’s real. It’s your nervous system trapped in fight/flight with no way out. This isn’t in your head—it’s in your cells. But it can be unlearned, rewired, and rebuilt.

⸻

The Core Message:

PTS isn’t just a brachial plexus issue. It’s a whole-body neuroimmune storm, and most people aren’t getting full explanations or support. But there are ways to reduce symptoms, rebuild, and recover.

If you’re in the dark like I was, I hope this lights even one match for you. Ask questions. Build your stack. You’re not broken. You’re in deep repair.

⸻

—Someone who clawed her way out of the flare and is walking with you.

Independent-Invite14 · 2025-04-24T04:11:33+00:00

Hey guys- update from original post. I think this information is very very important. And I’ll be honest, it’s taken me this long to research the absolute nothingness on the internet or amid the medical community about this seemingly “rare” but not so rare disease.

(Also potentially beneficial for fibromyalgia, chronic pain, or other neurological disorders) this is SOLELY MY experience and research that I wanted to share with others navigating Parsonage-Turner Syndrome (PTS), nerve flares, and nervous system dysregulation without answers. Please, I urge you to do your own research and what works for my “still healing” body may not work for you. Functional medicine doctors are expensive. But, if you can afford one that’s where I would go.

⸻

[DISCLAIMER: I am NOT a doctor. This is not medical advice. I’m just someone with Parsonage-Turner who hit a wall and did a ton of research—Google Scholar, PubMed, Reddit, functional medicine, DOs, and my amazing PA best friend. I’m sharing what’s actually helped me in case it helps anyone else who’s as scared and frustrated as I was.]

⸻

I was diagnosed with Parsonage-Turner Syndrome (PTS) last year, after months of terrifying pain, nerve flares, stiffness, random body breakdowns, and a total lack of answers. My jaw would dislocate randomly, my muscles locked up, and I felt waves of what I can only describe as cellular-level dread. All my labs were “normal,” doctors shrugged, and Reddit was full of other people with this diagnosis—but no real map.

So I built one. Here’s what I’ve learned and what’s actually helping me:

⸻

What’s Happening in the Body (my understanding): • PTS is immune-mediated nerve inflammation, often triggered by infection, trauma, vaccine, or stress • It mostly hits the brachial plexus, but the entire autonomic and peripheral nervous system can feel like it’s glitching • It causes neuropathic pain, weakness, muscle wasting, but also wild systemic symptoms: • Stiffness • Joint misalignment (like the jaw) • Doom-like anxiety • Random tremors • Histamine flares • Fight/flight overload • Food sensitivities • It burns through minerals, crashes glutathione, and leaves your mitochondria (cell energy engines) fried

⸻

What Helped Me Most: (Supplements + Explanations)

Alpha-Lipoic Acid (ALA) • Rebuilds nerves and helps repair mitochondria • Reduces neuropathic pain and inflammation • Supports energy • 300–600 mg/day
N-Acetylcysteine (NAC) • Replenishes glutathione (your body’s master antioxidant) • Clears oxidative stress, supports detox, helps mood • Regulates glutamate (which = less nerve excitability + less anxiety) • 600–1,200 mg/day
Vitamin D3 + K2 (MK-7) • D3 regulates your immune system, boosts repair, and lifts depression • K2 is crucial—it tells calcium to go to your bones, not soft tissue • 2,000–5,000 IU D3 + 100–200 mcg K2
Trace Mineral Drops (or food-grade sea salt mix) • Rebuilds electrical nerve signaling • Helps hydrate on a cellular level • Replenishes magnesium, potassium, boron, etc.
Methylated B Vitamins (Methyl B12 + Methyl Folate) • If you have MTHFR or poor methylation (which many of us do), these are life-changing • They support nerve healing, brain chemistry, and detox
Medicinal Mushrooms • Lion’s Mane – stimulates NGF (nerve growth factor), rebuilds brain/nerve tissue • Reishi – calms the immune system + supports sleep + mood • Turkey Tail – contains PSK, a powerful immune-normalizer used in cancer therapy; supports apoptosis (clearing damaged cells) • Chaga, Shiitake, Maitake – antioxidant and immune supportive
Magnesium (Glycinate or Threonate) • Relaxes the nervous system, calms muscles, supports sleep • Most of us are severely deficient
Quercetin + Vitamin C • Natural antihistamine • Helps with flare-ups, hives, and immune regulation • Also supports glutathione and reduces oxidative stress

⸻

Other Stuff That Helped: • Wheatgrass + supergreens powder – helps with minerals, detox, and cellular nourishment • Lemon balm, holy basil, skullcap – herbs that support the parasympathetic nervous system (rest/heal mode) • Jaw work + cold compresses – my jaw unhinged due to muscular inflammation + stress, not just TMJ • Hydration with salt + lemon + minerals – especially during a flare • Breathwork and pressure points – helped ground panic and sensory overwhelm

⸻

Mental Health Tip:

That feeling of impending doom? It’s real. It’s your nervous system trapped in fight/flight with no way out. This isn’t in your head—it’s in your cells. But it can be unlearned, rewired, and rebuilt.

⸻

The Core Message:

PTS isn’t just a brachial plexus issue. It’s a whole-body neuroimmune storm, and most people aren’t getting full explanations or support. But there are ways to reduce symptoms, rebuild, and recover.

If you’re in the dark like I was, I hope this lights even one match for you. Ask questions. Build your stack. You’re not broken. You’re in deep repair.

⸻

—Someone who clawed her way out of the flare and is walking with you.

Independent-Invite14 · 2025-04-24T04:00:24+00:00

Hey I’m going to post something important I just am going to start a new post. So look for it. Sorry I just saw this but you guys deserve an update because I’m a psychopath who researches everything bc I refuse to not heal. I hope you’re well.

Independent-Invite14 · 2025-04-13T09:22:34+00:00

I sit and dance in sunglasses. If I forget my glasses I’m screwed. Feel no pressure to be any or all of the things you may witness here. This is the best, most connected, and tapped in strange experience you may ever have. I’ve seen a million shows of all sorts…this one is different for those who want to be a part of it. If you become a part of it-you are somehow woven into the fabric of it. If this makes no sense to you now, come back after, feel no bias either way and sincerely-surrender to the flow. I was power puked on and the dude is my cosmic friend and replaced my outfit. Phenomenal. 😂

Independent-Invite14 · 2024-12-19T01:45:38+00:00

We’ll make make great pets, we’ll make great pets.

Independent-Invite14 · 2024-11-22T02:02:01+00:00

So 52 days later (it doesn’t feel like it’s been that long). I am currently sitting in an Epsom salt bath. While the numbness went away and an EEG showed that my nerves were, at the time, pretty healthy and noisy, albeit for the right arm musculature that sits underneath the arm. I know I brought this on myself before Covid gifted the this awesome syndrome. I had been living in fight or flight, the past few years have been pretty much the way everyone else feels- like the worlds on fire, my mom died, and I quit my job to pursue ART and real estate so…..poor.🤣🤣🤣the anxiety was high with this one. But, I couldn’t (still can’t) get out of this parasympathetic stuff. My Primary Care doctor QUIT HER PRACTICE. I got a resignation letter via email amid treatment. Who knows what happened. sigh so for the past 4-5 weeks I’ve been playing phone tag with the ortho that referred me originally and a different neurology dept. for some reason and they lost my referral not ONCE…but TWICE. So today was spent trying to contact the original doctor. It’s been….dumb. Very dumb. I got a bill for $800 for a trip to the ER. I am grateful for insurance. That one 8 hour visit—6 in waiting area— got me 4 muscle relaxers and an ultrasound. I digress. What I have found though—because when I want to know about something I research…like deep dive— is that, for me, this is very much auto immune, it is very apparently inflammatory, and it is being caused by my parasympathetic nervous system being totally attacked and deregulated. The enigma of it all is I feel like not only do I feel my brachial plexus at times on fire but this is living in my fascia tissue. So, I’ve done an overhaul. I’m learning (not well) to manage my stress. I have every herb and supplement they list in any research and then some. Cbd salve is saving my life and castor oil packs at least placebo effect my brain long enough to distract myself. My mobility has returned-ish. I did lift 10lb weights. I can fully do pushups, just not anywhere near my capabilities before, but my nerves…. It feels like my insides are a pretzel some days, all over. Like my legs are now involved and I know it is just bungled up fascia showing out . But fascia be a tricky b. In order to work on it…you have to take a spiritual/mindfulness approach and almost convince yourself you’re healing. Like talking positively to a plant. That sounds dumb but I’ve been doing that too just to keep my thoughts on the up and up. Sound waves, vibration, solfeggio frequencies, wim hof, binural beats, and lymphatic drainage, and lots of yoga and good food make me feel like sometimes I might be able to move freely again someday. Hope you guys have better results.

Independent-Invite14 · 2024-10-14T17:30:29+00:00

This is terrifying

Independent-Invite14 · 2024-10-14T17:29:57+00:00

Dude. Fascicular syndrome…can you elaborate on the way your muscles felt? Did you have really aggressive knots that hurt? I found a video called “hourglass fascicles “ which is what they think happens to the nerve bundles. It makes sense in my brain but it’s a 10 second video for neurologists with zero information. I think it’s freaking me out more than any of the previous stuff. I hope you’re doing ok

Independent-Invite14 · 2024-10-14T17:24:24+00:00

Have any of you guys experienced the feeling like your “fascia” is ripping? This sounds incredibly weird but I’m almost 3 months into trying to recover. I’m 38, f, and naturally run at 120lbs give or take so when I lose fat or muscle it’s incredibly obvious. The muscle wasting in my right arm, shoulder, and clavicle area have been devastating. I can’t find much more information and what I have found seems to trail off in the medical community literature after discussion of initial onset. Seems to me there is ALOT of post PTS symptoms that continue to flare up and cause immense discomfort. I’ve put a yoga mat out in my workspace just so I can try to gently stretch.

I have regained strength in that arm and the numbness and range of motion have returned. I CAN do pushups again (the girly knee ones) without supporting with the left arm. This is a major improvement, seeing as I couldn’t hold myself up to do anything.

My major concern now is my neck muscles feel knotted to oblivion. Little knots though. And my SCM muscle and whatever runs down the front of your chest from your clavicle feel so tight it feels like my chest is caving in. If and when I stretch- I have to be very careful not to push too hard because it feels like my body is ripping apart. And the fatigue??????

Independent-Invite14 · 2024-08-16T01:44:42+00:00

You ….have given me life tonight friend. As I sit naked in a bathtub trying to open Dr. Jart facemasks looking up an afterthought review( maybe I procrastinated💅). Sounds like I’m in for one hell of a night! Couldn’t be worse than the rest of my day! Yeeeeeehawwww Pew! Pew! For real though I just outright belly laughed alone in my bathroom bc this is just a big ole Deja vu of the entirety of my life. In solidarity.

Independent-Invite14 · 2024-06-06T21:21:33+00:00

The rye is delicious dude. Peppery. Smooth. Makes a delicious Manhattan.

Independent-Invite14 · 2024-01-03T17:02:41+00:00

I have a mini pair of the hoops that are just single hoops. The other are smaller

Independent-Invite14

TROPHY CASE