r/neuropathy

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?

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

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!

My doctor and I have exhausted every vitamin test trying to stop the neuropathy in my feet and nothing helps. They still burn after starting 6 months ago. I’ve had about 25 different blood tests and they all came back as in or near the green area in the results. They all show nothing wrong. No diabetes, B12 is good, no kidney problems, etc.

My doctor wants me to have a nerve test at a local neurology clinic. I’m told the test is painful. I already know mine is in the small nerves since I have no problem walking.

I asked what will I gain from the test and he had no answer. I’ve asked others if the information they got helped them and they all said no.

Should I have the test? Did it help you? If so, how. What did you do differently that has helped? Cured?