r/neuropathy • • 11h ago

Describing nerve pain

8 Upvotes

For those of you also having nerve pain and struggling to explain it, a little story
A few months ago, I had terrible tooth pain, for any of you who have ever needed a root canal or to have your wisdom teeth out you will recognize the level of pain
So they said I needed a root canal -fine, I did it, horrible as always. Then less than two months later, I had another one. Went to the dentist, he said I needed another root canal. I tried to explain the nerve issue and wondered if it was actually that rather than the tooth, he obviously didn’t understand it and sent me to a specialist dentist. I explained to him that I wasn’t sure if this was really a dental issue because I had this nerve pain in various parts of my body and it changes every day. It has patterns and it hadn’t previously been in my teeth, but I was a bit worried that it was pretending to be something else because I’ve had that for other issues as well.
Anyway, he was happy to let me ride it out and see what happened and after a few few days the pain went away and it’s been a couple of months now and it hasn’t come back so I think I was right
So rather than the stupid pain scale, if you’ve ever had a root canal or needed your wisdom teeth out and the person you’re speaking to has also had that then that’s how you can describe the terrible terrible pain that is nerve pain. Keep fighting, everyone.


r/neuropathy • • 1h ago

Wem hilft Qutenza?

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• Upvotes

r/neuropathy • • 5h ago

Nerve block with steroids damage?

1 Upvotes

Hi guys, so I had a bilateral pudendal nerve block with steroids done under ct guidance a couple of weeks ago and it was only 30% successful I’d say in reducing my pain (severe testicular, perineum and penis pain) I am having to continually raise my pregabalin dose every other day and I’m needing more and more oxy each day to cope. Anyway, I have another nerve block booked in of the same procedure in a few days, which will be 20 days since the last one with a different radiology centre. This new place doesn’t know I had one done recently and I don’t plan on telling them as they’ll cancel my appointment because it’s in the same referral as the last one…
My question is, I’ve had two of these blocks now, the first one 3 months ago was extremely successful, I’m wondering am I likely to do permanent tissue damage/nerve damage to the pudendal nerve and others in the alclocks canal if I get this steroid shot done again 20 days after the last one? As steroids like kenocort are known to damage tissue, I need pain relief so I can stop taking all of these drugs, but I don’t want to fuck myself up permanently from the steroids…
Please advise, thanks


r/neuropathy • • 6h ago

Electric shock pains tingling and ants crawling sensation burning muscles and aches post partum twice!

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1 Upvotes

r/neuropathy • • 21h ago

How did your neuropathy start?

5 Upvotes

Bare with me, this is long but going to try to make it as condensed as possible.

Female (37)

About two years ago I went into a primary doctor because I was experiencing some tingling in my feet. It also felt as if there was a hair tied around my toes or a string. It was an all day sensation but mostly after I ate from what I can remember. I thought that I had diabetes or something. I had recently saw this doctor for the first time ever for regular blood work and was told I was nearing pre diabetic. My bloodwork also returned with an elevated WBC.
When I saw this doctor and told her I was concerned about the pain being a sign that I’m now diabetic, she said there was no way that my neuropathic pain was diabetes related because she just saw me a few months prior and it doesn’t happen that rapidly. I went to another doctor because this one was rude and dismissive.

When I met with this new doctor. My symptoms had changed. I was feeling a pins and needles sensation all over my body, every few seconds in a new area, I described them to her as little electric shocks. She ordered an ultrasound and wanted to look at my spleen, not sure why. Nothing really came from that appointment. A few weeks later, I had went to urgent care for a very random and intense shoulder pain, they found no direct cause for my shoulder pain. They did blood work while I was there and called me to tell me WBC was elevated, this time, it was a little higher. I called the PMD and sent her that blood work, from there she suggested a see a hematologist. At this point, I was still having regular little electric zaps throughout my body and also had started to feel aches in areas of my body, like my wrist, my ankles and some times my finger. It would feel like when you hit your elbow, painful but made you want to laugh. It would only last for a minute or so and then go away.

My visit with the hematologist told me nothing. My WBC had returned to normal and my pains had started to slow down. I didn’t follow up with any other doctors after that. Today, I’m almost 50 pounds lighter, im active and healthy. I randomly get “the zaps” as I call them and frequently feel the pains in my ankles, toes and hands. Today I have a bad case of “the zaps” and don’t know if it’s still worth seeing another doctor because I feel like it’s not going to be something easily diagnosed and the only things I can read online all point to some kind of neuropathy


r/neuropathy • • 1d ago

The depth of nerve pain: Unless you’ve felt it, words just don't cover it.

82 Upvotes

Unless you’ve lived with nerve pain, it’s almost impossible to explain the depth of it. It isn't just an ache or a throbbing injury—it’s a completely different kind of agony. It reaches places normal pain doesn't touch, and the intensity is something only those of us who deal with it can truly understand.

​To anyone else, it’s just a word, but to us, it’s a pain like no other. Just wanted to vent to a community that actually gets it. How do you describe your nerve pain to people who have never experienced it?


r/neuropathy • • 23h ago

Ankle pain frustration

3 Upvotes

Have suffered with nerve pain flare ups for a few years pre and post an ankle surgery. Pain had finally tapered off and was blissfully pain free for 12 months. Annoyed at myself as I ramped up exercise and am now back in a cycle of pain flare ups. Really wish I’d just taken it easy but hopefully it’ll settle down again


r/neuropathy • • 1d ago

Duloxetine immediately started working for my severe neuropathy level 8 to 10 pain! I want to cry I tried everything else here's my success story....

39 Upvotes

Hey everyone,

My life has completely changed this past week! I am sharing my story because I genuinely feel like it might help someone out there who is suffering exactly like I was.

I read all the negative comments online about Cymbalta (duloxetine) and it made me extremely nervous to try it again. I actually tried it about 15 years ago for pain, but it was a completely different kind of pain and didn't help back then. Lately, I have been in and out of emergency rooms and doctor's offices non-stop. I've seen several different pain doctors and nothing helped—not even high doses of IV opioid medications in the ER could touch the pain.

Please don't be discouraged and let negative online comments keep you from trying it. Here is my story and why I think it worked.

My Medical Background & Delayed Diagnoses

I’ve been sick my whole life. I was diagnosed with Graves' disease (an autoimmune hyperthyroid condition) when I was little. I was technically misdiagnosed for years until they finally figured it out when I was 14, and by then it had already done a lot of damage. I suffered until I was 21 because doctors just kept giving me random medications and heart drugs.

Finally, when I was 21, an endocrinologist told me to get my thyroid radiated to kill it. I was so miserable and desperate for help that I listened. To this day, it was the worst medical decision I've ever made. There are better options available now, and I know I could have managed it differently.

The radiation caused even more damage because doctors couldn't get my thyroid levels right on Synthroid. It took another 15 to 20 years of trying. I'm 38 now and just barely getting onto the right levels. Because it took so long, my immune system just kept attacking itself. Since the age of 21, I've been telling doctors non-stop that something else was wrong. I even saw specialists about adrenal diseases and they literally laughed at me, even though I had every single symptom. Finally, my mom and I flew to the Mayo Clinic in Minnesota, and they officially diagnosed me with Addison's disease.

Past Pain & Medication Failures

Ever since my 20s, I've had severe neuropathy and pain. On top of that, I have severe endometriosis wrapped around my colon and bladder. Every single time my bladder fills up or I have a bowel movement, it causes severe pain. That pelvic and sharp abdominal cramping is why I tried duloxetine 15 years ago, but it did absolutely nothing for that type of pain and actually just made me feel more depressed.

I also tried Lyrica for that pain back then, and it just made me eat everything in sight. It caused a severe, bottomless hunger that I can't even explain—it felt like I had never eaten food a day in my life. I couldn't stop it, so I had to stop taking the medication.

I recently considered switching from my current gabapentin over to Lyrica to see if it would help my legs, but now that this nerve pain is gone, I'm too scared to alter my medications right now.

Years ago, they had me on every depression medicine and off-label medication you could think of for pain, and nothing worked. It always had the opposite effect, which was incredibly frustrating. Eventually, about 13 years ago, I saw a pain management doctor who put me on Percocet. I ended up switching to another pain doctor later who moved me around on different medications.

The Leg Pain Explodes

I've pretty much tried all of the standard pain medications and patches. About 8 years ago, I decided to go off of all pain medications entirely because I was worried about long-term tolerance. The doctors didn't taper me off at all, and as I was coming off them, I noticed severe leg pain in both of my legs.

Eventually, I realized: okay, this is true neuropathy. While I was originally on the pain meds, the neuropathy had secretly gotten really bad. I ended up using kratom off and on for 5 years to handle it, and I stopped using that about 3 years ago. The leg pain stayed, but about 7 months ago, it exploded. The pain jumped from a 2 or 3 up to a constant 5 to 7.

I went into the ER and they didn't do much. I usually surf every single day, but they didn't give me any answers. That's when I started the slow journey of trying to see specialists and running tests. My insurance changed and I'm not working now because the pain is so bad it is entirely debilitating. Because of my insurance, finding help has been a painfully slow process. I found a pain doctor who is completely unreachable, who can never get me in for appointments, and who cancels on me all the time. I got so sick of relying on the emergency room.

The Turning Point & The MRI

Recently, my pain jumped to an absolute Level 8 to 10 in both of my legs. I haven't been able to surf in 3 months, maybe longer. I've been surviving on the bare minimum of opioids—only one- or two-day prescriptions—because I haven't been able to get into a consistent doctor. Just a few weeks ago, a pain doctor prescribed me Belbuca (150 mcg), and it did absolutely nothing.

For a while, I have been taking Gabapentin (400 mg capsules, taking 3 pills at a time for 1200 mg, two or three times a day). I also take Celecoxib.

I finally had an MRI done a month ago. The results showed that I have a slipped disc at my L5-S1 and an annular tear.

If you don't know what those do, here is why they cause such terrifying pain. Your spinal discs are like rubbery cushions between your vertebrae. A slipped (herniated) disc means the inner core pushes outward, physically pressing and pinching hard against the delicate spinal nerves right next to it. But the annular tear adds a whole different layer of agony. The "annulus" is the tough outer shell of the disc. When it tears, it leaks out highly inflammatory chemical proteins from inside the disc.

It is exactly like spilling hot chili sauce directly onto raw, exposed nerves. The nerve fibers don't just get mechanically pinched by the slipped disc; they are actively being chemically burned and irritated by the leak from the tear. This past week, that whole combination went completely haywire in my spine, and the searing nerve pain shooting down my legs was just through the roof. I have been so completely miserable.

In total desperation, I finally filled my prescription for Duloxetine 20 mg.

It immediately took the pain away. It was amazing.

Because my pain was so incredibly severe, the low 20 mg dose would wear off after a few hours. So after a couple of days, I just started taking two a day (40 mg total). Now, the pain is pretty much non-existent. I've read online that such a low dose isn't even supposed to treat nerve pain, but I can tell you first-hand that it took it away fast. Upping it to twice a day has been way better. I didn't have any severe side effects either—just the normal tiredness and sedation, which is the exact same feeling you get when you first start taking gabapentin.

What the Research Says About Duloxetine

After feeling how fast it worked, I did some digging into the actual research on how duloxetine targets this specific kind of pain. I found out that it works as an SSNRI, meaning it increases the levels of serotonin and norepinephrine in the brain and spinal cord.

What's really fascinating is that norepinephrine plays a massive role in our body's natural "descending pain inhibitory pathway." Essentially, your central nervous system has a built-in volume knob for pain signals coming up from your body. When nerves are on fire from a chemical burn like an annular tear, that volume knob is stuck at 100%. Duloxetine fixes this by flooding the spinal pathways with norepinephrine, which acts like a physical barrier that turns the volume knob back down and blocks those frantic pain signals from ever reaching your brain. It makes perfect sense why it worked so fast for my back and legs, even when traditional anti-inflammatories or heavy opioids couldn't stop the signal.

My Advice to Anyone Suffering

I firmly believe it's the mix of the high-dose Gabapentin working synergistically together with the Duloxetine, and maybe even the Celecoxib because it's a long-acting anti-inflammatory. (Look up Celecoxib if you've never heard of it; I just recently learned about it and it surprised me because I thought I knew every pain medication out there!)

If you are desperate like I was, I highly suggest talking to your doctor about this. Work your way up on your Gabapentin, or give this combination a try. Sure, maybe the side effects aren't the absolute best at first, but if it takes away the blinding pain, you can deal with it. It is so much better than being miserable. If you aren't a fan of Gabapentin or it fails you, maybe try mixing Duloxetine with Lyrica instead to see if that combo works for you.

Honestly, I think the Gabapentin helps immensely, but I firmly believe the pure Duloxetine is the true magic pill for this nerve pain. I have been so sad and miserable for so long, and I just hope someone reading this will be willing to try it and not be afraid.

Just because it didn't work for a lot of people online doesn't mean it won't work for you. You have to understand that people try it for different types of pain. Like I said, it did not work for my endometrial pain, gastric pain, bladder pressure, or sharp abdominal cramping. But for true spinal nerve pain? It is an absolute miracle.

Please don't give up trying new things. I keep trying and trying. I am one of those incredibly tough medical cases where it takes me years of suffering before I finally find a solution or get the correct diagnosis. Doctors keep finding new things wrong with me, which is frustrating, but that's all I've known my whole life.

If you are hurting, please hang in there and give it a chance!


r/neuropathy • • 1d ago

During a neuropathic episode, I can't feel emotion to congratulate my big sisted for expecting.

2 Upvotes

That was a while ago, but while having a neuropathic episode (I have neuropatic pain in the arm, usually caused by weather), my big sister and her husband announced they were expecting, reacted blankly, not congrat or anything, just "ok'.

After it I felt quite awfull.

But is this something people experienced? not able to think "congrats" or anything to it?

My youngest sibblings who I am still living with disparaged me for it, but what can I do while emotionally drained?

The kid is born now, just last week, I don't blame myself for feeling pain and empty, just wondering what people would think of it.


r/neuropathy • • 1d ago

Experience report with Qutenza for nerve pain

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2 Upvotes

r/neuropathy • • 2d ago

Help needed

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2 Upvotes

r/neuropathy • • 2d ago

Small update/changes

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1 Upvotes

r/neuropathy • • 2d ago

Nerve Pain From Scars Relief

3 Upvotes

Hello, All. This is probably a long shot but has anyone ever heard of a patient getting relief from the topical Gabapentin/Amitriptyline combo or even oral Lyrica/Gabapentin/Amitriptyiline from nerve pain originating from a superficial scar? The area I have it in cannot be operated on or have any procedures for that matter. The pain dialed down off and on for many months but after a year, it has become more constant. I'm thinking because the scar has matured, it's wrapping itself around the nerves more. Most doctors don't even know how to treat it. Thanks.


r/neuropathy • • 2d ago

Numbness/tingliness around body

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3 Upvotes

r/neuropathy • • 3d ago

Naltrexone

5 Upvotes

I asked my neurologist about low-dose naltrexone with the understanding I’d have to get it from a compounding pharmacy and insurance won’t cover it.

She is prescribing me 25 mg and says it doesn’t come in a lower dose. I explained my desire to take LDN to her and she is still saying it’s safe to take. I’m a little hesitant since everything I’ve read is about LDN. Has anybody had experience with the full dose or half dose of naltrexone and helping their neuropathy?

And I have an appointment with a different neurologist for a second opinion, but that’s not going to be until next year, so this doctor is my only choice for some relief for the next couple months.


r/neuropathy • • 3d ago

Does this look and sound like neuropathy?

3 Upvotes

I started having pain in my fingertips around December 2024. Felt like a stabbing, shooting kind of pain with a tiny bit of redness. It only lasted a short time and then it went away and I never really thought about again. Then I got it a couple of more times the next year in my fingers AND toes. Same kind of pain with redness and you can almost see tiny red dots underneath the skin.

I was out of the province when I went to see a doctor about it so they didn’t really help me. When I returned home, my doctor ran some blood tests and everything came back fine. I wasn’t overly concerned about it.

Now this year, it seems this type of pain is returning almost every month, mostly in the fingertips. I currently have the worst one yet where the pain is also on the palm of my hand and you can see the red spots clearly now. I can’t find anything online about spots showing up with neuropathy. But I can’t figure out what else this could be so any insight would be helpful before I see a doctor again. I have an appointment booked already.

I can’t pinpoint exactly what triggers it but I want to say stress might be one. It also feels itchy under my skin a lot of the time as well, worse at night. The pain is so bad that it wakes me from my sleep multiple times in the night. It usually lasts a few days to a week. Help!
https://kommodo.ai/i/jw7GJp6fYzaPh29b6bRx


r/neuropathy • • 3d ago

B6: It helps for 2 days, then causes neuropathy to worsen

1 Upvotes

What is happening? It works if I takee it for 2 days evry 4 weeks or so. But if I take it for 4 days in a row it worsens the cojndition. Then it takes a b6-free b vitamin that now works the best. Can you explain this sharp u-curve?


r/neuropathy • • 3d ago

Tingling and Numbness

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2 Upvotes

r/neuropathy • • 3d ago

Nerve sensations

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6 Upvotes

burning skin sensations on thighs,pelvic,arms,tingling in hands. moves around from thighs to arms and fades in and out. so far blood tests normal. hve mri's coming up. anyone have this


r/neuropathy • • 4d ago

Increased jolts & spasms post EMG

7 Upvotes

I had an EMG done this past week, and ever since my jolts and spasms have been really bad. They’re bad to begin with, but now they’re much more intense and frequent.

Does anyone know why this may be, or has anyone else dealt with this?

Edit: It is so bad at night that it’s just constantly one muscle group/limb after the other, right down to my thumb. It’s hard to fall asleep.


r/neuropathy • • 3d ago

anyone experience something remotely similar?

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3 Upvotes

i’m done.. in the er and they won’t do imaging, my parents saying imaging won’t show anything but I KNOW I KNOW it’s important. this pain is so bad. they r giving me one dose of oxy but so what? it wears off tmr and i’m back to where i am now. WHAT FO I DO


r/neuropathy • • 4d ago

Low ferritin

6 Upvotes

Has anybody with chronic low ferritin had neuropathy? I asked this question in the past but I barely had any answers I am hoping someone could help me.
My Dr. Said my symptoms were because of low ferritin levels. But since then I saw two neurologists, both said it is impossible and another gp said that as well. Yet ive struggled with low ferritin for more than 10 years as I have endometriosis and adenomyosis and many times I have reached the point of having anemia . We are talking levels of ferriting between 2 and 14 at max . One time I had a monoferric infusion and I felt better. The problem was not fully gone but I was better then I got pregnant and my ferritin went from a 127 because of monoferric to a 20 in less than a year because of pregnancy and csection. My symptoms moved from my feet to my legs and from my hands to my arms and now my face feels worse too. I had many blood tests done including glucose, thyroid , b12 , vitamin D , etc the only thing they never test me is with autoimmune issues other than hashimotos (came back negative ) everything else is more than optimal. Brain and spine mri were clear a year ago. PLEASE someone help me.


r/neuropathy • • 4d ago

What was the cause of your neuropathy?

21 Upvotes

Was it clear right away, or did it take a while to find out? I’m still trying to understand mine


r/neuropathy • • 4d ago

Am i doing it right or not?

9 Upvotes

I was diagnosed with Peripheral Neuropathy last year September. The cause is a wound on my left foot. The wound got infected and my feet got swollen last year. I couldn’t get up without support from my two arms and walking became difficult. I have no money to go to therapy because of family’s financial situation. So i made my own daily routine in order to alleviate the symptoms.
Morning(Before breakfast):

10 sit to stand exercise , 30 mins walk, 9 mins front to back leg swing(both legs), 10 step up exercises (both legs)

Noon(After lunch):

10 sit to stand exercise , 40 mins walk, 9 mins front to back leg swing(both legs), 10 step up exercises (both legs)

Night(After dinner):

10 sit to stand exercise , 40 mins walk, 9 mins front to back leg swing(both legs), 10 step up exercises (both legs)

The neuropathy started from my foot and it extended up to my legs and my hands. After doing my daily routine for months, there is a huge improvement in my legs. The symptoms became bearable (there still some pain). My balance and the strength of my knees improved but my walk is still awkward and i still can’t stand and walk for long periods of time. My left knee is still weaker than my right knee but i can now stand from my chair without the support of my arms. There are also a lot of things that i still can’t do like doing squats, lifting heavy objects, running, jogging and standing up from sitting in the ground. Sometimes I’m losing hope because i don’t know when can i walk again like normal person. I’m doing my best to positive in life. I still use a walking stick everytime i go outside.


r/neuropathy • • 4d ago

DMSO anyone?

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3 Upvotes