Nerve Pain from HELL

Posted by insanepain @insanepain, Jun 22 3:45pm

I have Neuralfibromatosis Type1. I had a L3/L4 fusion in 2020 at the apex of my Scoliosis to relieve back pain. That went fine. With my condition I have several internal fibromas inside my body. One of which was on my L5/S1 Vertebrae that was pinching a nerve sending pain down my left leg. It was inside a myelin sheath, and when the surgeon operated on me in August of 2025 he had to quote: 'Sacrifice a nerve' end quote. I woke up to my left leg numb, dead, lifeless.. I thought it was nerve block, but no. I was told it was permenate. I could move my leg and foot, just couldn't feel anything. Fast forward a few weeks after the surgery. From the knee to my ankle still feels numb, like Novocaine when you go to the dentist. When you get home and you're smacking your face in the mirror. Know what I mean? You feel your hand touching your face, but you don't really feel it. That's what my leg feels like. My foot however is hypersensitive and in constant pain. Just touching it is excruciatingly painfull. I cannot walk on it, or even touch it. Putting a sock on is beyond painfull. Plus I get these electric pulses that are rythmic, that intensify the pain and take it up a notch. It's now Insane Pain. They gave me muscle relaxers, pain pills, Pregabalin (it was Gabapentin), and nothing works. My foot is in CONSTANT 24/7 pain, and the jolts I get make the pain 10X worse. I can't sleep, I can't even walk on it. I hop around on one foot with my walker, and can't do anything. I can take pain, but this constant nerve pain is totally insane. I don't know what to do. Seeing 5 Dr's that don't know what to do either. All the mends they gave me for Neuropathy do NOTHING.

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Profile picture for jmj70 @jmj70

I had used myocalm (natural ingredients given to me by chiropractor)for many years. I am now using Nerve Support from Research Verified for about a year. This has taken care of the foot pain and tingling. Hopefully this might help.

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@jmj70 I'll try anything that can possibly help. Amazon loves me.. lol I've tried countless supplements and topical creams/oinments that haven't helped, but I will keep trying. Thanks for the suggestion.

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Profile picture for marcd2k @marcd2k

@insanepain That does make sense it would be nerve related for the symptoms you have. This is something I believe is going on with my medical issue.

On my right side, the "love handle" area is the best way to describe where this is, has been numb for three years. This starts in the obliques, goes around my right hip, and ends in my right flank. A good 8 inches around, and 2 to 3 inches from top to bottom of the numb area. I also get jolts in my side on top of the cramping I have all day.

I did EMG and Nerve Conductivity tests last year, and they confirmed there is Denervation from the T12-L1 area that goes around my right side. They call this Radiculopathy, with the pain and symptoms circling around my right side.

Unfortunately, I have had three epidurals in the past 2 1/2 years, with the first two doing absolutely nothing (not better, but not worse), and the third one back in February this year, making it worse. There was a lot of pain during the epidural, which I did not experience with the first two, and 48-hours after, I was in more pain than before the epidural. This has continued until today, with more pain and cramping than I have had before.

I don't understand how the literal top physicians in my city, at every major hospital we have, (I've been to them all), have no idea what this could be. I cannot be the only person in the world this has, or is, happening to.

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@marcd2k I feel for you. I have been to so many Dr's and so called 'specialists' both here in Texas and in Las Vegas (before we moved), and they just run more tests and give me more assorted pills that do nothing. EMG's and MRI's and some saying 'you'll have to learn to live with it'. Beyond frustrating.

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@insanepain have you tried acupuncture? I’ve had nerve (I think ) pain for almost 7 yrs from mastectomy. The last 3 yrs have used acupuncture and it has made a markedly huge difference. Can you move your foot on your own, as to get movement and circulation going in it? Since ‘pharmaceutical’ creams/oils etc don’t seem to work maybe try some natural balms. I use Vitality Extract balms or oils. I use Frankincense & Helichrysum for pain and works well. You could also try their balms or essential oils for circulation like Deep muscle , which works well for me or Three Kings balm, which o have not used but reviews are good.
Blessings to you and may you find relieve and cure soon.

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Profile picture for sequoia @sequoia

@insanepain have you tried acupuncture? I’ve had nerve (I think ) pain for almost 7 yrs from mastectomy. The last 3 yrs have used acupuncture and it has made a markedly huge difference. Can you move your foot on your own, as to get movement and circulation going in it? Since ‘pharmaceutical’ creams/oils etc don’t seem to work maybe try some natural balms. I use Vitality Extract balms or oils. I use Frankincense & Helichrysum for pain and works well. You could also try their balms or essential oils for circulation like Deep muscle , which works well for me or Three Kings balm, which o have not used but reviews are good.
Blessings to you and may you find relieve and cure soon.

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@sequoia Yes, I have tried acupuncture, and the effects which helped, only lasted a short time. I have also tried the Three Kings balm and others that had the Frankincense, which I really like, but it had no effect on my nerve pain. My pain management doctor thinks that nothing topical can reach the nerves to do any good. After I get my new EMG I will be getting a Neurolytic Lumbar Sypathetic Block, which hopefully will last me a few months. He also upped my Lyrica from 75mg to 150mg. Will see.

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Profile picture for insanepain @insanepain

@sequoia Yes, I have tried acupuncture, and the effects which helped, only lasted a short time. I have also tried the Three Kings balm and others that had the Frankincense, which I really like, but it had no effect on my nerve pain. My pain management doctor thinks that nothing topical can reach the nerves to do any good. After I get my new EMG I will be getting a Neurolytic Lumbar Sypathetic Block, which hopefully will last me a few months. He also upped my Lyrica from 75mg to 150mg. Will see.

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@insanepain acupuncture treatments is a journey. It’s not a few treatments. The good news is that you say it helped. That is key. Why did you stop if you were getting positive results? I was having my ‘episodes’ every 2 weeks. Back to acupuncture for treatment. Like your Lyrica that isn’t lasting, so you up it. Acupuncture allows your body to heal itself verses meds that just mask pain.
Maybe give acupuncture more of a try. I’ve been having Acupuncture treatment for 3 yrs and my ‘episodes’ are gone and I have slight tightness in shoulder blade/ ribcage area that Turmeric and Boswellia take care of just a side note: I’m not associated with any acupuncturist- just a happy recipient of the treatment and works for me. Blessings to you and pray that your upcoming Lumbar Sympathetic block works. (((hug)))

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Insanepain. I sympathize with you
I have excruciating pain in my right buttock. It hurts to sit walk . In pain all waking hours. I pray you get help
Marlie

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I stumled upon this article after I had a nice juicy Hamburger, that w as loaded with saturated fat. I had been doing 'ok' that day. My foot was in pain, but it was 'tolerable' (like when you go to the doctor and they ask you "on a scale of 1 to 10, 10 being the worse pain you've ever had, and you look at them and say 20 or 30.. lol I HATE that question), but I enjoyed the burger. About half an hour later, my foot started going crazy on me, doing it's pulsating pain from hell. Every 5 seconds, BAM, BAM, BAM! Like Bam-Bam keeps hitting it with his club, over and over. So.. I did some reasearch, and found this article. Not sure if that's why, but it kinda makes sense. Don't know if anyone else has considered or thought of this that's going through what I am. Thought I'd share. Since then, I have been very careful of what I eat, and it has helped somewhat. There's goes my 4th of July. lol And I am NOT diabetic, which is why this really made me scratch my head a little.

"High intake of unhealthy fats, particularly saturated and trans fats, can worsen neuropathy by promoting inflammation, oxidative stress, and impaired nerve function, while omega-3 fatty acids may help protect nerves.
How High-Fat Foods Affect Neuropathy:
High-fat diets, especially those rich in saturated fats and 6 polyunsaturated fatty acids (PUFAs), have been shown to trigger peripheral neuropathy in animal studies, even in the absence of diabetes. These fats can induce nerve inflammation, increase pain sensitivity, and contribute to chronic neuropathic pain by altering the function of sensory neurons in the dorsal root ganglia, which relay pain signals to the
brain (PMC).
In humans, trans fats, hydrogenated oils, deep-fried foods, fatty red meats, and processed baked goods are linked to systemic inflammation, poor circulation, and oxidative stress, all of which exacerbate nerve damage and neuropathic symptoms such as burning, tingling, and numbness.
Saturated fats, particularly palmitic acid found in animal products, can directly activate nerve receptors that mimic injury, further increasing pain.
Mechanisms of Damage:
Chronic Inflammation: Unhealthy fats trigger immune responses that irritate peripheral nerves, compounding existing nerve damage.
Blood Sugar Dysregulation: High-fat diets often accompany refined carbohydrates, leading to glucose spikes that damage small nerve fibers.
Nutrient Depletion: Diets high in unhealthy fats may reduce the availability of vitamins and antioxidants essential for nerve repair, such as B vitamins, magnesium, and vitamin E"

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Profile picture for insanepain @insanepain

I stumled upon this article after I had a nice juicy Hamburger, that w as loaded with saturated fat. I had been doing 'ok' that day. My foot was in pain, but it was 'tolerable' (like when you go to the doctor and they ask you "on a scale of 1 to 10, 10 being the worse pain you've ever had, and you look at them and say 20 or 30.. lol I HATE that question), but I enjoyed the burger. About half an hour later, my foot started going crazy on me, doing it's pulsating pain from hell. Every 5 seconds, BAM, BAM, BAM! Like Bam-Bam keeps hitting it with his club, over and over. So.. I did some reasearch, and found this article. Not sure if that's why, but it kinda makes sense. Don't know if anyone else has considered or thought of this that's going through what I am. Thought I'd share. Since then, I have been very careful of what I eat, and it has helped somewhat. There's goes my 4th of July. lol And I am NOT diabetic, which is why this really made me scratch my head a little.

"High intake of unhealthy fats, particularly saturated and trans fats, can worsen neuropathy by promoting inflammation, oxidative stress, and impaired nerve function, while omega-3 fatty acids may help protect nerves.
How High-Fat Foods Affect Neuropathy:
High-fat diets, especially those rich in saturated fats and 6 polyunsaturated fatty acids (PUFAs), have been shown to trigger peripheral neuropathy in animal studies, even in the absence of diabetes. These fats can induce nerve inflammation, increase pain sensitivity, and contribute to chronic neuropathic pain by altering the function of sensory neurons in the dorsal root ganglia, which relay pain signals to the
brain (PMC).
In humans, trans fats, hydrogenated oils, deep-fried foods, fatty red meats, and processed baked goods are linked to systemic inflammation, poor circulation, and oxidative stress, all of which exacerbate nerve damage and neuropathic symptoms such as burning, tingling, and numbness.
Saturated fats, particularly palmitic acid found in animal products, can directly activate nerve receptors that mimic injury, further increasing pain.
Mechanisms of Damage:
Chronic Inflammation: Unhealthy fats trigger immune responses that irritate peripheral nerves, compounding existing nerve damage.
Blood Sugar Dysregulation: High-fat diets often accompany refined carbohydrates, leading to glucose spikes that damage small nerve fibers.
Nutrient Depletion: Diets high in unhealthy fats may reduce the availability of vitamins and antioxidants essential for nerve repair, such as B vitamins, magnesium, and vitamin E"

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Hi @insanepain - would you by chance have the citation for or link to this article?

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Profile picture for insanepain @insanepain

@marcd2k It's ok, thanks for the help/sugestions. The problem with my Neuropathy (if that's what it truly is), is that it's the result of the surgeon severing the nerve. While my leg remains numb and Jell-O like, the pain I am experiencing is solely in my foot and the pulsating jolts (not spasms, which is why I think the muscle relaxers are not working), I am experiencing I believe are the nerve(s) regrowing, a possible form of plasticity. I'm no doctor of course.

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@insanepain So you surgery was in Aug 2025 and you believe your nerves are regrowing now? And that's what's causing your pain? Just asking because I had spine surgery in Sept 2025 and still have lower back pain and much numbness along back of thigh, calf and whole foot. I would really love for my nerves to be regrowing but I cannot tell if they are. Do you feel that your nerves are better (regrowing) post-surgery?

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