r/neuropathy

New moderators needed - comment on this post to volunteer to become a moderator of this community.
▲ 2.6k r/neuropathy+365 crossposts

New moderators needed - comment on this post to volunteer to become a moderator of this community.

Hello everyone - this community is in need of a few new mods, and you can use the comments on this post to let us know why you’d like to be a mod here. 

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Comments from those making repeated asks to adopt communities or that are off topic will be removed. 

u/GaryNOVA — 20 hours ago

Best shoes for neuropathy in my feet

Can anyone recommend a shoe that is especially good for neuropathy in you feet? My sketchers slip ins have begun to feel “claustrophobic” and hard. Not sure where to start. TIA!

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u/Skipdog74 — 1 day ago

Shortness of breathe

I work as a teacher to supplement my income. However, I’ve been experiencing shortness of breath while speaking. Has anyone else had this happen?

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u/Cabriocario — 19 hours ago

Pain help?

My bf has neuropathy due to having back surgery years ago and them pulling a bit too tight (also he’s old). I got some cream that helps him a lot but I’m looking for heated socks or something. His feet stay freezing I guess because bad circulation. He basically has no feeling in his feet, specifically his toes, at all. Idk how he’s walking around tbh. I bought these expensive ass socks off Amazon below after reading some good reviews and he says even on high he can’t feel the heat. I need to find SOMETHING to help cause he’s on his feet all day for work and it gets worse in the winter time. Like something intense. Like one step down from taping space heaters to his feet 🫠🙃 like I need him to be in danger of catching on fire lmao.

u/_dilf_hunt — 1 day ago

Should I have AFOs?

If I don’t ALWAYS toe catch/toe drag, but often do resulting in injury, or I smash my outter toes off things (sensory nerve damage).

Does this sound like an AFO situation?

I have to use a walker outside the home so I don’t eat pavement lol.

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u/Bobs_Burgers7 — 18 hours ago

Single-dose amitriptyline completely removes pain within minutes

Hi, I've had on and off pain for years. Sometimes it gets better, but when it gets bad, it gets really bad. Amitriptyline is the reason I still have a job.

Before I'd discovered such a medication, I'd tried everything I could get my hands on to no avail; OTCs, CBD, T3s, and others like duloxetine. I could enter a fit of searing pain randomly at any point of the day or weeks on straight. While others were seeing friends and family, I cancelled plans to lay in the bathtub with, at the time the only thing that worked, copious amounts of whisky. I once agreed to attend the movie theater but spent most of it crying in the public washroom. I can't even describe the depth of pain during that dark period. I didn't want to die, I just didn't want to be. Eventually, alcohol's effectiveness wore off too.

When amitriptyline was introduced to me as a 1 tablet a day, I suddenly had control over my body like I was a kid again. However, this kind of consistency was only for a short time due to mania and gravely depressive pendulum it put me through. From that point on I only used it off-label as needed. On a good week, this could mean only 0-2 low dose pills. On a bad week, everyday, but not near consistent enough for it to build up in my system.

Whenever the burning pain came in, I could take just one pill of the lowest strength and within 10 minutes, my 'debilitating' pain became undetectable. During a full blown episode and a few more tablets, then even the associated bladder failure could be cured, again, within minutes. After everything that failed me previously, I couldn't believe the immediate relief amitriptyline gave me from the very first pill I took. I'm not saying it's for everyone but it's definitely the one for me.

Which brings me to the reason I created this post..

From what I've read online.. this shouldn't be possible. Has anyone else had this sort of experience with this drug? Or can anyone weigh in on why it is so immediately effective?

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▲ 3 r/neuropathy+1 crossposts

I need help for who to see and if you’ve heard of anything like this. (Neck, nerve, throat, hyoid pains)

All started when I was watching a TV show with my little brother. I tried to crack my neck like always and ended up feeling a strange pop in my neck around my right hyoid bone, a little under it. This was followed by some ringing ears and some lightheaded feelings. The next day I had a terrible pain in my throat on the right side when I swallowed. Then over a week or so I started to develop nerve tingling in my face and my hands. Then my right SCM began to tighten. I saw a neurologist my MRI’s were clean other than some inflammation in some areas, he gave me a trigger point injection that didn’t really help in my occipital area. This didn’t help, and he then sent me to physical therapy. I formed a knot in my throat around the same area under my hyoid bone, and the nerve pain went away at this point after a month.

PT helped my SCM release, which released plenty of my muscle pains. However, over months the right SCM would just retighten over and over again. Eventually other muscles starting taking its place and role. Including my right masseter, and my right scalene. Then fast forward 8 months of this cycle happening. Some periods where all I’d have is pain in my throat, and a cough without any sinuses with only one of those mentioned muscles being tight. Then this summer it went from tightness in my right middle scalene to hot inflammatory pain in my throat around my hyoid bone. Then it exploded into nerve pain that would have extreme cross-talk between my trigeminal nerves and my great Auricular nerve and my transverse nerves on my right SCM. Along with plenty of cross-talk between my right throat nerves and both the SCM nerves and my trigeminal nerves at times. It was the worst pain I’ve ever experienced; tingling, numbness, shooting, and muscle tightness.

Over this summer through plenty of rest in bed, good sleep, eating much better, and doing only light leg workouts I have had a strange process. The stages formed a pattern that I think I’ve had many times, but also I think it indicates the ability to heal, hopefully. First, my nerve flare ups calmed down slowly. Then my muscles have all stoped guarding for over a month now, except for my middle scalene which remains tight but specifically when I standup or sit-up. However, once my muscles all stopped guarding my nerve pain continued with flare ups. The nerve pain and flare ups have sort of platesued but it’s improved significantly from the a month ago. Many nights I experience hot pains now and inflammation along my scalene and in my throat around my right hyoid. I’ve also had some jaw pain and jaw numbness before, but both have significantly calmed down. Along with the inflammation, my right hyoid muscles seem to be highly overreactive when I try to swallow or flex them. To the point where it’s hard for me to flex the left muscles around my hyoid. Also some nights recently they have tightened around the right hyoid bone area and felt like they were guarding something. Point is that I don’t know what popped originally but it is interwoven with my nerves and muscular structure in a complex way. My MRI’s, CT scans, and my blood tests all come back clear. My current hypothesis is that it has to be something dynamic and/or deep. Something like a deep micro-tear in the longus colli muscle or the anterior longitudinal ligament. Which has led to the compression and interference with my sympathetic nerve trunk and cervical spine that a static MRI or CT scan wouldn’t catch with me laying down. Either way I experience nerve irritation daily and it’s very interconnected no matter where it starts.

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u/Substantial-Debt2325 — 23 hours ago
▲ 2 r/neuropathy+1 crossposts

Progressive numbness right side of body now affecting ankle

30F 5'2" non smoker, Dx Ehlers Danlos / HSD, taking Clomipramine, Adderall, and bc pill

I have somehow, through overtensing my muscles, managed to do something to permanently numb both half of my right hand and halfway down my calf to my feet, causing foot drop. This was happening intermittently to my lower right leg (mostly from wearing sandals) but has now become permanent. In the beginning I was rolling my ankle constantly, but muscle memory seems to have kicked in and allowed me to walk despite the drop. I know this is probably bad for my back because of the way I am replicating flexion of the ankle by lifting instead of striding. It's that or I am walking heel toe with my left foot and toe heel with my right.

I am suspicious this all began when I tore my right rotator cuff a year ago. I currently do not have health insurance and am doing fine, but the only response from research I get is “go to the ER yesterday.” I am mostly concerned because I've completely lost grip strength in my right hand (will literally forget and drop plates/mugs lol) and now it is seemingly spreading to everything below my knee. It is a little hard to type as well unless I watch my hand whereas it used to be something I could just do. I also think adderall has me so tense all the time, but ironically it also really helps with the general fatigue - so I still feel better on it. But this is getting weird. Left side is completely fine.

This has been the case for months now. Has anyone experienced this?

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Feel like I’m freezing when it’s 100°f out

at least once a week right after waking up I have this sensation where im constantly freezing even if it’s hot so I stay under blanke. even though I’m freezing my body also sweats like a hose because its hot still which makes me even more frozen

I have full body nerve damage and Taking lyrica and blacofen and cymbalta. so I get some relief but not all

is there anything else that could help me with the temperature thing

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u/Future-Grass7501 — 1 day ago
▲ 3 r/neuropathy+1 crossposts

Seeking advice for self advocacy

I’m 38M and in 2021 I had a fairly severe L4-L5 disc herniation. I had bilateral weakness and numbness from the waist down and was unable to walk normally. I went 7 weeks between injury to my discectomy with partial laminectomy. Post op was normal but I was left with lasting neuropathy in both legs, feet, and toes. I occasionally have numbness in my arms and hands too.

This became my new normal, living with constant burning nerve pain. I go through periods of relatively low pain and then it can flare up. I did see my neurosurgeon for a follow up in 2023 with a new MRI and everything looked normal for 18 months post-op. My neuro prescribed gabapentin for the nerve pain and that seemed to help.

The pain had gotten quite severe and the lower back pain is also back. I have been trying to get back into my neuro’s office since June 4, 2026 and the earliest is November. I am starting PT in September but am I expected to just hang tight in excruciating pain until then? How is that humane?

I’m seeking advice on how some of you folks have articulated your amount of pain to your primary and also neuro doctors because I feel I’m not saying the correct things to them. I explain that every waking moment of my life is spent in agonizing pain. That sitting causes me to be in pain and that standing for more than 10 seconds soon becomes excruciating with the burning nerve pain in my feet and legs. I’m not sure what else I can do to convey to my medical team that what I am experiencing is severe and I want some relief from the constant pain.

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u/jahangirqazi — 1 day ago
▲ 9 r/neuropathy+1 crossposts

Neuropathy and Employment

Hello folks. I’ve suffered a rapid onset of symptoms followed by all the tests and imaging, culminating in a diagnosis of small fiber neuropathy in my feet and legs due to a delicious buffet of chemotherapy. I fought my way through the cancer only to be palsied and made a fall risk for, apparently, the rest of my life. I’ve ‘enjoyed’ reading about everyone’s adventures here and wanted to ask for any experience, strength or hope regarding employment. I am currently a high school culinary arts instructor which requires me to be on my feet and moving daily. We’ve just begun our year and I’m already struggling with the foundational class work prior to entering the kitchen, and I’m not confident I’ll be able to do the job long term. My admin is supportive and I’m in the process filing ADA paperwork, but at the end of the day, I can’t run a kitchen full of youngsters from a chair. Like most, my income and employer sponsored health insurance are a necessary shield against financial collapse. Coming from a kitchen/education background gives me lots of transferable skills but finding a compatible job without a four year degree, especially in this market, seems unlikely. I’m a few years away from 65, and could take Social Security, but Medicare wouldn’t kick in until I hit that age. I’ll assume that I have too many resources to qualify for Medicaid. So has anyone dealt with this sort of thing? Any ideas for a way forward? I could get insurance through my spouse, that’s one plus, but the money would still be lost. I could start my own business as a ServSafe instructor/proctor, but there would be a long ramp up to hit anything like my current income level. Oh, and let me say it first, “Welcome to America “. Thanks for reading my post.

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u/vilhelm63 — 1 day ago
▲ 20 r/neuropathy+2 crossposts

What would mimic neurosjogrens ? What else could it be ?

I hope someone can help me.. I have neurological symptoms such as SFN, POTS, Raynauds including almost no saliva. I have had multiple blood panels done and they’re all negative including SSA ANA SSB. My lip biopsy and ultra sound were both negative for sjogrens.

I have no inflammatory markers at all and the only abnormal finding I have found is low neutrophils and low wbc which is not common in seronegative sjogrens. I also took an early sjogrens panel with one positive marker and have had 3 rheums tell me that the test is not accurate. Where should I even go from here ? Is this even sjogrens at this point ?

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u/Correct-Wish-5807 — 2 days ago
▲ 4 r/neuropathy+1 crossposts

For anybody who receives IVIG for neuropathy specifically MMN ( Multifocal Motor Neuropathy ) how often do you get treated ? How long before you noticed improvement if any ? And how many grams are you receiving per dose ?

I’m asking because I’ve been on 35g a day 2 days a month for about 3-4 months now and i really haven’t noticed any improvement . My condition effects my legs/ankles they are really weak and i need a walker to get around because of the weakness and i lose my balance easily . Just not sure how long it should take to see if this infusion is going to work for me or not .. any help is greatly appreciated with your experiences . Thank you

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u/DatBoyChamp1 — 2 days ago
▲ 5 r/neuropathy+1 crossposts

Feeling touch twice?

I have sfn. Occasionally, when there's a light/moderate touch on my skin, say, somebody touching my arm to get my attention, I'll feel it twice.

I'll feel it in my arm like normal, but I'll also feel a tingling sensation on a different part of my skin. I might feel it in my calf, thigh, ribs, etc. Mostly it's in my legs, which makes sense because that's where a lot of my other sfn symptoms happen.

Does anyone else experience this? Does anyone know if there's a name for it or any research on it?

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u/aman_dalynn — 2 days ago

The scientifically backed science to teeth health and neuropathy.

I kinda took this one on the chin and mildly surprised that participants in the thread didn't read the studies I linked nor did they do their own research, instead I was hit with Rule 5. "Pseudo science"

u/amisamiamiam

Teeth health? Can cause neuropathy.

Upvote2DownvoteReplyAwardShare113

neuropathy-ModTeam

4h ago

Your post was removed due to:

No pseudoscientific or anti-scientific posts

__________________________________________________________________________________

Here are the studies:

There is a growing body of research linking periodontal disease, tooth loss, and poor oral health with diabetic peripheral neuropathy (DPN). The evidence is strongest for periodontal/gum disease rather than ordinary cavities by themselves.

  • Guo et al., 2026 — Chronic periodontitis and the risk of diabetic peripheral neuropathy A longitudinal study finding that chronic periodontitis was associated with an increased risk of subsequently developing diabetic peripheral neuropathy. This is important because it goes beyond simply showing that the two conditions occur together. https://pubmed.ncbi.nlm.nih.gov/41837149/
  • Menchaca-Díaz et al., 2012 — Severe periodontitis, edentulism and neuropathy in patients with type 2 diabetes Found that severe periodontal disease and complete tooth loss were significantly associated with diabetic neuropathy. The association persisted after adjustment for other variables. https://pubmed.ncbi.nlm.nih.gov/22367307/
  • Abrão et al., 2010 — Periodontal disease and risk for neuropathic foot ulceration in type 2 diabetes Found a striking association between periodontal disease severity and neuropathic foot-ulcer risk. About 18% of patients with no/mild periodontal disease had neuropathic foot-ulcer risk, compared with roughly 68% with moderate/severe periodontal disease. https://pubmed.ncbi.nlm.nih.gov/20637517/
  • Balkaran et al., 2020 — Periodontal disease and severe diabetic peripheral neuropathy Examined whether periodontal disease was more prevalent or severe among people with severe diabetic peripheral neuropathy and found an association between periodontal disease and advanced DPN. https://pubmed.ncbi.nlm.nih.gov/32663921/
  • Mirea et al., 2024 — Associations of dental and periodontal lesions with diabetic complications Found complicated dental and periodontal lesions were strongly associated with diabetic peripheral sensory-motor neuropathy as well as poorer metabolic/inflammatory markers. https://pubmed.ncbi.nlm.nih.gov/39768293/
  • Moore et al., 1998 — Type 1 diabetes mellitus and oral health In more than 400 people with type 1 diabetes, neuropathy was associated with tooth loss and extensive periodontal disease. Neuropathy independently predicted partial tooth loss. https://pubmed.ncbi.nlm.nih.gov/9729758/
  • Steigmann et al., 2022 — Type 1 diabetes and oral health: DCCT/EDIC findings Long-term data from the DCCT/EDIC cohort showed diabetic complications, including peripheral neuropathy, were associated with substantially increased odds of tooth loss and adverse oral-health outcomes. https://pubmed.ncbi.nlm.nih.gov/35000860/

Possible mechanism

The proposed relationship is not simply:

“bad tooth → damaged foot nerves.”

A more plausible pathway is:

periodontal infection/inflammation → increased systemic inflammatory signaling and oxidative stress → worsening insulin resistance and glucose control → increased microvascular and metabolic injury to peripheral nerves.

Diabetes can simultaneously worsen periodontal disease, so researchers describe the diabetes-periodontitis relationship as bidirectional.

Periodontitis therefore may act as an additional inflammatory burden in someone who is already susceptible to diabetic nerve damage.

Important distinction

There is reasonably good evidence connecting periodontitis/gum disease with diabetic peripheral neuropathy.

There is much less evidence showing that ordinary tooth decay by itself causes peripheral neuropathy.

Dental abscesses and chronically infected teeth can contribute to systemic inflammation, but evidence showing that a single dental abscess directly causes neuropathy in the feet is currently weak.

The most interesting recent evidence is the 2026 Guo study, because chronic periodontitis predicted later development of DPN rather than merely being found at the same time as neuropathy.

So the defensible claim is:

“Periodontal disease is associated with diabetic peripheral neuropathy, and newer longitudinal evidence suggests it may independently increase the risk of developing DPN. Chronic oral inflammation may worsen inflammatory, metabolic, and microvascular processes involved in diabetic nerve injury.”

Not:

“Cavities have been proven to cause neuropathy.”

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u/amisamiamiam — 2 days ago

What symptoms did you not realize were neuropathy? (and how to be taken seriously?)

I am in the process of making an appointment to meet with a neurologist as I have Sjögren's and am nervous of peripheral neuropathy, small fiber neuropathy, and dysautonomia. In the past I got some EMGs and they were normal but I am pretty convinced there is something going on. I'm learning that there's a lot I deal with that isn't normal and so I am wondering if there were any symptoms that you thought everyone experienced day-to-day.

Some things I want to mention at my appointment:

  • random stabs of pain usually in big toe, notice it mostly at night when laying in bed
  • when laying down with knees bent and feet planted on mattress, it hurts where my feet meet the mattress. not sure what people mean by burning sensation but possibly that?
  • muscle spasms
  • go pins and needles in extremities very quickly in certain positions, for example legs and feet fall asleep a lot when I sit on the toilet, hand falls asleep while holding phone
  • change in feeling of grip of dominant hand. holding a game controller feels very strange now, my hand on the steering wheel can feel different from before and it's almost like my two middle fingers on that hand are in the way of each other if that makes sense
  • pupils can be weird, sometimes one seems bigger than the other, dilate a ton when drinking alcohol
  • sweat a lot and it comes quickly with temp changes
  • some dizziness upon standing/vision goes dark

Mostly I thought most of these were just part of being human, now I think they are signs of some sort of dysfunction especially of the autonomic nervous system. I feel like this should be enough to warrant some type of testing but am not sure. I have no idea how they decide who gets a sweat test, skin biopsy, etc. What else should I be paying attention to? How can I best communicate it to be taken seriously?

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u/-kinehora- — 3 days ago
▲ 11 r/neuropathy+1 crossposts

Help please

I am finding it incredibly difficult to go on living, even for a single moment. I grew up under a lot of stress, and things became even worse after I got married nine years ago; I spent most of that time in tears, and in the process, both my career and my health deteriorated. Then, around January 8th or 9th, 2024, a strange thing happened. I looked in the mirror—something I did routinely—and suddenly noticed a significant amount of gray hair at my temples. I was completely devastated and wept; a sudden, drastic change came over me, whereas just the day before, I had felt motivated to improve my life. That day, I felt that the immense stress had made me look old for my age; the strain of married life and issues regarding my maternal home had completely drained me. I felt as though everything was over and there was nothing left for me to do; I even lost the will to live. Basic things like eating or washing my face in the morning ceased to be priorities, and I became afraid to look in the mirror. Three or four days later, I went to the emergency room. Initially, the doctors treated the situation as routine, but after I mentioned my history of migraines and a burning sensation in my feet, they admitted me to the hospital and prescribed antidepressants. I have been taking the maximum dosage, yet since 2024 even i got pcos more gray hair waigt gain more and more, I have been unable to focus my vision on anything close up. Other issues—ranging from a burning sensation in my feet to insomnia—have persisted; nothing worked, not even the various check-ups and CVT therapy I underwent. The condition has worsened significantly since March 2026; now, I feel an intense, deep-seated pain. I suddenly feel like my life is completely over—I am a 31-year-old woman, and it feels like everything has ended. I experience heart palpitations and feel that dying instantly would bring me more peace than my current state of living. Even if I manage to fall asleep for a moment, I wake up to my heart pounding again. I feel like my life is over; seeing my graying hair makes me even more afraid. Meanwhile, my relationship with my husband is in a state of limbo—I lack the courage to leave and find happiness, yet I am not happy staying with him either. I spend the entire day in a state of panic, unable to summon the courage to do anything else; I feel increasingly isolated. What should I do in this situation? All I can think about is wishing for a quick death.

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u/Illustrious-Pace6695 — 3 days ago

Has Anyone Found Something That Really Helps Neuropathy?

I’m suffering with neuropathy, and I’m having a difficult time finding something I can tolerate.
My doctor prescribed Requip, but it makes me yawn continuously for hours. I was also given gabapentin, but it knocks me out completely. I don’t want to spend my days exhausted or sleeping just to get some relief.
For those of you who also suffer from neuropathy, what has actually helped you? Have you found another medication with fewer side effects, a topical treatment, physical therapy, TENS, or anything else that made a noticeable difference?
I’m not looking to replace my doctor’s advice or start taking something on my own. I’d just like to hear about other people’s experiences so I have some options to discuss with my doctor.
Neuropathy can be absolutely miserable, and I’d really appreciate hearing what’s worked—or hasn’t worked—for others. ❤️

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u/apk772 — 5 days ago
▲ 4 r/neuropathy+1 crossposts

Flare with neuropathy

In another flare, but this time I am getting neuropathy in my feet. This one is particularly bad with some major bone deep pain and fatigue. But my foot was feeling like it was walking on ice and just burned really bad. It would go back and forth from that and buzzing. One night it was all four hands and feet buzzing so bad I couldn't sleep. It was the craziest sensation. Has anyone dealt with this? My rheumatologist is sending me to a neurologist now, we still haven't pin pointed what autoimmune disease is causing my symptoms, but its a very systematic one with a broad array of symptoms from swollen stiff joints, lots of pain all over, major fatigue, and so many other random symptoms I cant even recall from the cognitive issues. I just cant think right now.

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u/skittles-marie92 — 3 days ago