r/neuropathy

Hi! Been diagnosed with idiopathic small fiber neuropathy in my legs. Negative ANA, couldn’t afford the skin biopsy test, and normal MRIs of the brain and spine. They ran the Multiple Sclerosis protocol on me (and this could still be on the table if more things develop or lesions start to show up).
I’m on Gabapentin and medical marijuana for pain.
I have a daily sort of tingling, numbness, pain, and perceived weakness battle going but for the last few months it hasn’t been unbearable.
Over the last week I’ve been increasingly miserable with tonight being the peak.
The pain has radiated up to my hips and lower back. My muscles twitched and tightened uncontrollably for the last 4 hours or so. My muscles are so sore and the pain brought me to tears.
My symptoms have been cyclical and constant but this feels like my body has been attacked hard!!! Does this happen normally or to anyone else? This has really scared me.

I've called a few Wellness Clinics and the typical price seems to be around $5,000 to $10,000 on the low end.

Is it a scam? Has anyone tried it with success?

Also wondering if Testosterone Replacement Therapy could help heal inflammation.

Or what about Ivermectin?

(Obviously, this is about Neuropathy)

Any bad experiences of severe neuropathy after lower lumbar fusion? I’m 54/M, 5 weeks post alif L3-5, tlif L5-S1, 360. I felt pretty descent a couple weeks post surgery. Woke up one morning and the neuropathy is out of control. I take 600 mg, 3x a day Gabapentin.
Can anyone explain their post surgeical experience w/ neuropathy, feet throbbing and lower back pain?

I was diagnosed with chronic demylinating polyneuropathy through an NCS (abnormal sensory slowing) and and EMG (abnormal). I got these done at my local neurologist, but I am waiting to see a neuromuscular specialist to figure out the cause. I experience twitching/fasculations, pains and aches everywhere, very quick muscle fatigue (even something like taking out the trash) and occasional numbness. They’ve already ran blood tests to check for everything basic. What can I expect next at the neuromuscular specialist ? And does anyone with these symptoms have a definitive diagnosis? It’s been about a year and 3 months since the symptoms began.

Just wondering if anyone has tried the peptide BPC 157 for Neuropathy/Nerve Damage. If you did what, what were the Results?

Positive or negative?

Back in October of 2025, I injured the left side of my throat/neck by straining the muscles for way too long. Sort of the same way you tense those muscles when you're trying to hold your breath, I did this for over 8 hours straight (Don't ask why. I'm a moron, and it's a long story) even though I was getting major pain and warning signals from my body to stop after about 40 minutes. Unsurprisingly, it caused major issues afterwards.

Within about an hour of stopping, I developed vertigo with severe jaw pain, major issues breathing in (also, when I would breathe out, barely any air would leave my nostrils), the left side of my face/neck went partly numb, and something felt really wrong with my left nostril also -- as if it wasn't really getting much sensation anymore, my throat became EXTREMELY tight to the point where I could barely lift my head without severe discomfort, a bunch of muscles in my chest/ab area felt "frozen", my nervous system starting freaking out for several days, and I lost all sensation of air moving through the left side of my body for lack of a better way to put it -- as if my body was tightly shut all of a sudden. I don't know how to describe it exactly, but everything just felt "wrong", and it was pretty scary.

The really severe symptoms lasted for 1-2 weeks, and then I spent another 3 months having major difficulties breathing. My blood oxygen always stayed 97 or above when I felt like I would breathe in, and barely any air was getting in. X-rays would also come back normal, so doctors just kinda shrugged at me.

Things very slowly started to improve in January. Since then, it gets a tiny bit better every 3-4 weeks. My face is feeling less and less numb, I can feel air moving through my body again, and my breathing has been slowly improving, although it's still not back to normal. In particular, when I breathe out now, there's a significant amount of air coming out of my nostrils again.

My throat isn't really super tight anymore, but the left part of my neck/throat that I strained the worst still feels "off" like someone always has their hands there. If I strain my neck muscles in any way like when I'm on the toilet, I can feel that the area is still very irritated and uncomfortable even though it's been 8 months. I dunno if I'd call it pain exactly, but it doesn't feel good.

Did I somehow manage to cause some major nerve damage by straining my neck for way too long that one day? What are the odds the damage is permanent? I've talked to doctors about this, but they all said it's incredibly unlikely that I could self inflict something that serious even if I did basically tense a bunch of muscles for 8+ hours straight, and they refused to do any soft tissue scans to check because they didn't want to expose me to any unnecessary radiation. The most I got was an ultrasound on my neck that came back relatively normal.

There is some progress from month to month, so it seems like something is happening, but it's very very slow, which is why I suspect some kind of nerve issue 'cause I read that it can take years for nerve tissue to regenerate enough -- especially because the symptoms started like immediately after I injured myself like that. I know there are nerves in the neck that control breathing muscles like the diaphragm, so I wonder if I might've injured or badly compressed one of those

Anyone have any thoughts?

How Extra Virgin Olive Oil healed my nerve damage (neuropathy) which made my gastroparesis (paralyzed stomach/intestine) better.

I had all three: sensory, motor and autonomic symptoms of nerve damage.

Pain. Needles. Burning. Electricity.
Shocks. Muscle numbness/weakness/twitching. Sensitivity to temperature,
touch, and water.

And, digestive issues like gastropareiss. Which is not being able to digest food because my stomach/intestine were paralyzed.

How did it heal?
Extra Virgin Olive Oil by Pomonte

I consumed one teaspoon of Evoo with an avocado mashed in water 4x a week.

I took it like medicine, put the teaspoon of olive oil in my mouth, then take a tablespoon of an avocado. Mix it in my mouth and swallow it so the olive oil didn’t burn my throat.

Saw results every day, week and month!

——

You can find the company online, not sure where my dad got it from.

I no longer yawn, feel nauseous, or cough. While sleeping, saliva gets into my airways, indicating swallowing problems. My doctor recently checked my limb reflexes, and they are very weak in my legs and practically nonexistent in my arms. I also have a burning sensation in my extremities similar to electricity or vibration. I also have a lack of muscle tone.

.. This whole problem arose because of SSRI antidepressants. I haven't taken antidepressants for over a year, but my symptoms have only gotten worse. I have PSSD and a complete numbness of all emotions, including a lack of fear. It seems I'm stuck in a parasympathetic nervous system state.

Has anyone else experienced loss of reflexes?

constant pulsing of pain going through foratms and hands, pain in sternum and red mark beliw my wrists

i rang my bell low key friends jumped after and saved me from drowning whole body went numb the second i hit the water

i can move/bend everything just slowly, annlying lightning pain pulsing down myarms and hands.

clocking into work right now but id love some advice to cut the pain

So I had posted the other day about having numbness and tingling that started in in my toes and moved to my ankle and the next day was up to my knee. The next day I got really nervous and called my cop s office and got an urgent visit. I explained my symptoms and the dr took a look at my foot. He was concerned by the amount of weakness in my foot and sent me to the ER.

I was checked by a PA, a neurologist and a hospitalist. I had 3 MRIs bloodwork a couple of times. The neurologists decided I need to have a EMG I have no idea what to expect. Anyone ever have one and can give me a clue what they are what they are looking for?

I've had CIPN for almost 20 years. Tried everything including opioids and after that settled on natural kratom powder for the past 8 years. Kratom completely kills the burn but im sick of it so I tapered off. My pain level is spiking badly but strangely it burns intensely one day, the next it's calm then the next day it burns. Its been alternating like this for at least two weeks. Weather effects the pain but it's been hot and humid with ac on everyday and still alternates exactly every other day. Hydration makes no difference. Barometer stable. My schedule is the same every day. Im home all the time. It has always fluctuated but never this on off on off pattern exactly every other day. I cant figure it out.

hey everyone,

i'm 27f and my neurology appointment isn't until july 27, so i'm hoping someone here has been through something similar.

about 2 weeks ago i suddenly started limping. my right foot feels heavy after walking for a few minutes, my ankle feels unstable, and sometimes my toes scrape the ground. my right big toe is weaker than the left, but the numbness i had on top of it has mostly gone away.

i don't really have pain. it's mostly weakness, heaviness, and my walking just feels... off. i also get a lot of tension in my right hamstring and butt when i stretch that leg.

my doctor already referred me to neurology. i also found out i'm severely vitamin d deficient (10.9), but i don't know if that's related.

has anyone had similar symptoms that ended up being a disc bulge, l5 nerve, peroneal nerve, piriformis, or something else? did it improve while you were waiting for answers?

it's getting to the point where i don't even want to go out because i can't walk normally anymore.

Hi everyone,

As mentioned in the title, this is chemo induced neuropathy from Kadcyla. I have had a week break and we are reducing the dose by 25%.

I'm with curaleaf and have an appointment with them tomorrow, I've seen a lot of posts / spoken to people that say it helps, I have oils - CBD in the morning and THC at night.

I also have a dry herb vape and have tried:
- Pennywise (11% THC/11% CBD) I was advised to use this as my base and always have this
- Lavender Cake (20% THC/ >1%CBD) helped with the pain slightly but tasted bad didn't like it
- Tripoli (20% THC/ >1%CBD) as above, but I get on better with this than LC.

I've seen on various MC subs, discord etc that it helps with neuropathy but struggled to get meaningful advice directly related to neuropathy.

Now this is driving me mental, my hands are constantly burning, pain hitting like 8/10. I'm also on Gabapentin 300mg x3 a day, which we are slowly upping to 600mg x3.

It just won't let up, and without the THC oil at night and 2 bowls of Tripoli / Pennywise mix I can't sleep from the pain. It's in my feet too at about a pain scale of 4/10, but my hands is really where it is getting me.

I do plan to ask the Curaleaf Dr what they recommend for nerve pain but does anyone have any advice for when I am allowed to select my strain of what terpenes to look for, or any other tips of what I should ask for?

I've only been using MC for coming up 3 months, previously it was black market and that helped, so I am aware we've not got the balance right and my tolerance might be higher than first thought.

TIA. Neuropathy sucks.

Has anyone tried cannabis for their neuropathy pain? And if so, did you notice any healing effects? What strains seemed to alleviate your pain and symptoms? I just began taking Gabapentin again, however, i am looking for an alternative.

>

Hi everyone,

I wanted to share my story in case someone here is going through something similar. Maybe someone can relate or offer some advice.

I'm a 24-year-old guy diagnosed with axonal sensory-motor polyneuropathy with distal denervation of my lower limbs.

My symptoms first appeared (or at least became noticeable) when I was around 16. Before that, I was very active. I loved playing football (soccer), played almost every day, and I'd say I was fitter than most of my friends.

Then, almost overnight, everything changed.

I stopped being active and started avoiding PE classes because I just couldn't keep up anymore. The frustrating part was that the symptoms weren't obvious at first. People assumed I had simply become lazy or that I had gained weight and lost interest in sports.

That couldn't have been further from the truth.

I loved football, and it felt like something I loved was suddenly taken away from me. It wasn't my choice.

My first symptoms were:

• Muscle weakness
• My hands would randomly clench or tighten for no reason
• Constantly cold hands and feet

Later, I lost the ability to stand on my toes or my heels.

I was finally diagnosed when I was 19. At the time, I was devastated. My neurologist believes it's most likely genetic.

Now I'm 24, and thankfully my condition hasn't progressed much over the last few years. I still have muscle weakness, get tired much faster when walking, and I have foot drop, which makes walking more difficult.

Over the past year, I've really focused on improving my health. I've lost 20 kg (44 lbs), started eating much healthier, and overall I feel much better. Being overweight definitely wasn't helping my legs.

I exercise regularly at home to maintain as much strength as possible, eat a healthy diet, and take the supplements recommended by my doctor.

The biggest struggle for me now isn't actually the physical symptoms—it's the mental side.

Because of the muscle wasting in my lower legs, my calves are very thin. I absolutely hate wearing shorts because people notice them immediately.

Recently I went to the beach with some friends. As soon as they saw my legs, they started commenting on how thin my calves were. They probably didn't mean any harm, but it made me feel really uncomfortable.

I don't want my legs to become the topic of conversation every time I wear shorts, and I don't want to explain my condition over and over again.

I've spent years trying to build my confidence, but sometimes one comment is enough to remind me of my illness and it feels like all that confidence disappears.

It's exhausting.

I just want to live a normal life, but somehow this disease always finds a way back into my thoughts.

So I wanted to ask:

• Does anyone here have a similar condition or experience?
• How do you deal with the mental side of it?
• How have your friends and family reacted?
• Have you been able to build relationships or find a partner despite having a condition like this?

I'd really appreciate hearing from anyone who's been through something similar.

Thanks for reading.

BLUF: Currently taking Pregabalin 200mg 3x daily for the last 3 years for serious nerve pain in my feet. Neuropathy was caused by chemotherapy (Oxaliplatin) in 2021. Interested in changing to 330mg Extended Release.

History: Began with Gabapentin in 2021 until I was on the maximum dose and it was not enough. Changed to Pregabalin in 2023ish. Began on a lower dose (don't remember the steps). Been on the maximum 200mg 3x daily for years now.

Impacts: The current maximum 200mg 3x daily dose is frankly barely enough. I'm still in pain most of the time every day. Towards the end of the 8 hour period, pain increases. Of course without it, the pain would be excruciating. I don't even know what the side-effects of it are since I've been on it so long. I am always tired and I'm fat, so there's that. But I've been on it so long, IDK what is a side effect of the Pregabalin vs some other crap in my life.

Change: In the interest of taking less drugs and maybe less side effects, I'm wondering what I may expect by changing to 330mg extended release once daily.

Type 2 diabetic. It’s just getting worse and worse even with my blood sugar controlled. Both feet are numb but sensitive at the same time. Feels like there is sand in them. Stiff and dry. At night I sometimes have to spray cold water on them or ice them. No lotions work. Is there any relief?