Can Severe (electric shock-like) Pain be a sign of Regeneration?

Posted by ranchan @ranchan, Aug 29, 2021

Hello, I'm writing here on my sister’s behalf in an attempt to find some reasonably solid answers to the question posed in the title of this discussion.

I have been able to find tantalizing clues online that suggest that peripheral nerve regeneration can be accompanied by tingling and pain, but nothing that seems particular to my sister's circumstances. What follows is an attempt to frame the question more specifically, and to ask if such a supposition even makes sense in my sister's case.

In a nutshell, and based on a variety of symptoms and an MRI, she was diagnosed with Cervical Myelopathy – I'm not sure about any further specifics, i.e. which numbered vertebrae are involved. She has had two surgeries. The 1st was by a spine surgeon who implanted a bone graft, and the second was by a neurosurgeon who removed the bone graft (while condemning that approach in no uncertain terms) and proceeded to fuse certain vertebrae – again, I'm not sure which ones. Subsequent to the second surgery she was in a neck brace for several months and unable to take any steroids or OTC pain relief meds as they can inhibit bone growth. Once she was able to remove the neck brace, and based on an evaluation of her progress, she was told that this abstention from steroids, et. was to continue for at least another 6 months.

Around the middle of month three and after considerable improvement of many the more painful symptoms, she suddenly started experiencing what she described as unbelievably painful electric shocks in the ulnar region of her left hand – pain that, at it's worst she said was comparable to child birth contractions. In response she was given prednisone. Five days after an initial round the pain returned and she was given a second round. She just had an emg done which did not show anything that would account for the severe pain. She has other appointments scheduled for this week, but thus far no one has advanced a workable theory to account for these pains, or put them into perspective – much less how to mitigate them going forward.

Numbness (etc., in her left hand), and loss of function in the pinkie & middle fingers, and to a similar, but slightly lesser extent on her ring finger were some of the initial symptoms prior to diagnosis, and have progressed significantly since then. But the excruciating pain in the left hand is completely new & unprecedented.

So, given the above, and based on the collective experience of this group, I’m asking if the supposition embedded in the title question (“Can Severe (electric shock-like) Pain be a sign of Regeneration?”) could actually be a positive consequence of the second surgery, or largely an exercise in wishful thinking?

I would greatly appreciate any wisdom (anecdotal or otherwise) on the subject that anyone would care to offer!

And finally … My sincere thanks (and apologies) to anyone who has had the patience to read this all the way to the end!!

Interested in more discussions like this? Go to the Neuropathy group.

Hello @ranchan, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. What a great question and one that a lot of us who have had neuropathy for awhile ask ourselves as we are praying for an "awakening" of peripheral nerves. Here's some information that I found that talks about it.

"What are the signs of nerve regeneration? — The pain is a sign of irritation of the nerve; tingling is a sign of regeneration; or more precisely, tingling indicates the presence of young axons, in the process of growing." — The Sign of "Tingling" in Lesions of the Peripheral Nerves: https://jamanetwork.com/journals/jamaneurology/article-abstract/570603

You might want to suggest to your sister to plan her conversation with the doctor at her upcoming appointment to ask the questions she would like to get answered. There is a great website that has some tips for planning the conversation for your next appointment that she might find helpful – https://patientrevolution.org/visit-tools.

I've had idiopathic small fiber peripheral neuropathy for 20+ years and started taking supplements for it in 2016 and after a few months my numbness seemed to get a little better and the progression seems to have slowed or stopped but I haven't had any follow on nerve test to see if they are better that when I was diagnosed. Lately my feet feel a little more normal and I feel some tingling but not a lot. So I often think about that question – are my nerves starting to heal a little.

I also have carpal tunnel syndrome in my hands which sounds like it could be what your sister is experiencing also. Has she ever been tested for carpal tunnel syndrome?

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@johnbishop

Hello @ranchan, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. What a great question and one that a lot of us who have had neuropathy for awhile ask ourselves as we are praying for an "awakening" of peripheral nerves. Here's some information that I found that talks about it.

"What are the signs of nerve regeneration? — The pain is a sign of irritation of the nerve; tingling is a sign of regeneration; or more precisely, tingling indicates the presence of young axons, in the process of growing." — The Sign of "Tingling" in Lesions of the Peripheral Nerves: https://jamanetwork.com/journals/jamaneurology/article-abstract/570603

You might want to suggest to your sister to plan her conversation with the doctor at her upcoming appointment to ask the questions she would like to get answered. There is a great website that has some tips for planning the conversation for your next appointment that she might find helpful – https://patientrevolution.org/visit-tools.

I've had idiopathic small fiber peripheral neuropathy for 20+ years and started taking supplements for it in 2016 and after a few months my numbness seemed to get a little better and the progression seems to have slowed or stopped but I haven't had any follow on nerve test to see if they are better that when I was diagnosed. Lately my feet feel a little more normal and I feel some tingling but not a lot. So I often think about that question – are my nerves starting to heal a little.

I also have carpal tunnel syndrome in my hands which sounds like it could be what your sister is experiencing also. Has she ever been tested for carpal tunnel syndrome?

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I’ve also dealt with neuropathy for 20+ years. I’ve had electric shock symptoms from my sacrum down my legs for the entire time. After 17 years I had a rapid spread from my feet to legs to neck to arms and hands. It seemed that all the nerves in my body became involved. For me, the electric shocks seem to be a symptom of neuropathy, not healing but hard to know. I have severe carpal tunnel but I think it is also peripheral neuropathy because it spread and got worse along with all the other nerve pathways.

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@jgraber

I’ve also dealt with neuropathy for 20+ years. I’ve had electric shock symptoms from my sacrum down my legs for the entire time. After 17 years I had a rapid spread from my feet to legs to neck to arms and hands. It seemed that all the nerves in my body became involved. For me, the electric shocks seem to be a symptom of neuropathy, not healing but hard to know. I have severe carpal tunnel but I think it is also peripheral neuropathy because it spread and got worse along with all the other nerve pathways.

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@jgraber I would tend to agree with you, especially if I had the electric shock symptoms all along and they have gotten worse over the years. Have you found any treatments or alternative therapies that have helped with your symptoms?

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@johnbishop

@jgraber I would tend to agree with you, especially if I had the electric shock symptoms all along and they have gotten worse over the years. Have you found any treatments or alternative therapies that have helped with your symptoms?

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I find it interesting that high doses of ibuprofen with low dose tramadol work the best for me. My liver and kidney function are very good. I take medicine to protect my stomach. The pain is worse than labor so the side effects are better than the pain. I love gardening and being outside working in the dirt is very therapeutic even if it increases the pain. I can’t walk very far or the next day I’m in agony. I used to run competively and backpack with my family and now I stay home from family trips or anything athletic and I have a very athletic family. That makes me very sad but I try to stay positive. My husband and I used to walk together and I would walk with friends. This was my alternative to back packing and running. Not being able to walk now is very hard.

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John, I forgot to add that I tried everything 20 years ago when the nerve symptoms began. I did acupuncture, injections (this increased the nerve pain and put me in the ER), antidepressants, muscle relaxants, gabapentin (took forever 20 years and recently switched to Lyrica), vitamins, etc. One thing I learned about damaged nerves after 20 years. They don’t like to be irritated or stimulated or they go crazy. I do best when I do gentle movements and activities, nothing to strenuous.I read that neuropathy can progress very slowly and I didn’t realize it was progressing until it started spreading everywhere. I’m still happy, especially after ibuprofen. My Dr. suggested CBD or THC. I recently started CBN with .5 mg THC for sleep and I can sleep better with this. It does not make me feel high. Increased levels of THC make me feel high and dumb.

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Thank you for the timely link to the site with tips for planning for a productive visit to a doctor!
Regarding healing nerves, I would like to add that after a fall and a blow to the cheek bone (bad black eye) in February, the nerves seem now (August) to be waking up. They tell me by sensations of wetness on my face, similar to tears, in addition to the tingling and pricking.
It guess it takes at least months to heal nerves.

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@jgraber

I find it interesting that high doses of ibuprofen with low dose tramadol work the best for me. My liver and kidney function are very good. I take medicine to protect my stomach. The pain is worse than labor so the side effects are better than the pain. I love gardening and being outside working in the dirt is very therapeutic even if it increases the pain. I can’t walk very far or the next day I’m in agony. I used to run competively and backpack with my family and now I stay home from family trips or anything athletic and I have a very athletic family. That makes me very sad but I try to stay positive. My husband and I used to walk together and I would walk with friends. This was my alternative to back packing and running. Not being able to walk now is very hard.

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I have had a sudden loss of mobility with severe polyneuropathy in my legs, and numbness in my hands. Your sadness at not being able to walk resonates with me since I was the Nana that walked with my granddaughters and swam in the ocean with them. Driving is no longer a possibility as well. So loss and grief are mixed with disability and physical pain. It hurts on many levels. Thanks for sharing the sadness that is part of the territory with neuropathy. @efgh1020

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Thank you for your comment. I’m so sorry walking and driving are no longer possible for you. It is so helpful to talk to someone about the grieving and loss with neuropathy. Along with the suffering, we have to deal with the loss.

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@jgraber

Thank you for your comment. I’m so sorry walking and driving are no longer possible for you. It is so helpful to talk to someone about the grieving and loss with neuropathy. Along with the suffering, we have to deal with the loss.

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@jgraber Thanks for your kind response. I have been talking to a therapist who understands mourning the sudden loss of function, and in a way, of our old identity. We need to build a new life around our disability, but grieving our old mobile and easily active life is part of that process. We can't stay in that sadness but we have to accept it and go through it. Then we can look at what we can do, instead of looking back at what we can no longer do. I am in the middle of that process, I think. @efgh1020

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@efgh1020

@jgraber Thanks for your kind response. I have been talking to a therapist who understands mourning the sudden loss of function, and in a way, of our old identity. We need to build a new life around our disability, but grieving our old mobile and easily active life is part of that process. We can't stay in that sadness but we have to accept it and go through it. Then we can look at what we can do, instead of looking back at what we can no longer do. I am in the middle of that process, I think. @efgh1020

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That is excellent advise and very helpful. When I first started having neuropathy symptoms 20 years ago I went through severe depression, anxiety and I went to many different physicians looking for a cure. I had a full hysterectomy that threw me into surgical menopause and the severe nerve pain continued. I finally got to a very smart neurologist and gynecologist who put me on the right medications so I could cope. I also started therapy. At that time the therapist told me I needed to pace myself, do a little work and rest and do a little bit more. I was resistant to taking medication initially because as a nurse I was scared of addiction and harming my kidneys or liver. My husband told me something that really helped. He said “so what if you die a few years earlier due to the medication because you can’t live now with this level of pain.” The neurologist told me it was better to take the medications and keep active rather than not taking the meds and become inactive and have my muscles atrophy. This advise from these three people helped me tremendously. When the neuropathy spread to the whole body, I again started going to many physicians to find out what is happening. I know that this may be my “new normal“ and I will again have to come to a level of acceptance but it certainly is a process and doesn’t happen overnight. I hate the pain but I’m thankful that I live in this day and age when there are medications and treatments that can help.

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@jgraber

That is excellent advise and very helpful. When I first started having neuropathy symptoms 20 years ago I went through severe depression, anxiety and I went to many different physicians looking for a cure. I had a full hysterectomy that threw me into surgical menopause and the severe nerve pain continued. I finally got to a very smart neurologist and gynecologist who put me on the right medications so I could cope. I also started therapy. At that time the therapist told me I needed to pace myself, do a little work and rest and do a little bit more. I was resistant to taking medication initially because as a nurse I was scared of addiction and harming my kidneys or liver. My husband told me something that really helped. He said “so what if you die a few years earlier due to the medication because you can’t live now with this level of pain.” The neurologist told me it was better to take the medications and keep active rather than not taking the meds and become inactive and have my muscles atrophy. This advise from these three people helped me tremendously. When the neuropathy spread to the whole body, I again started going to many physicians to find out what is happening. I know that this may be my “new normal“ and I will again have to come to a level of acceptance but it certainly is a process and doesn’t happen overnight. I hate the pain but I’m thankful that I live in this day and age when there are medications and treatments that can help.

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@jgraber Your response is really helpful. I am with a good neurologist who is trying to see what sort of nerve damage we are dealing with. So I have a nerve biopsy on Friday to see what can be learned from that. I have lost muscle already, but am keeping up with leg and upper body exercises to maintain the strength that I have. So far, Tylenol and Gabapentin are making pain manageable. The “comet” pain goes through my foot or leg fast, although it takes my breath away.
I appreciate your wise husband and neurologist with their advice should I need stronger medications for pain, and I connect with your working on accepting a “new normal.”
My numbness has spread to my hands. I’m hoping it is from leaning on the walker, and not a spread of neuropathy. So far, I can still grasp things and type. My best coping mechanism is to keep in the day, and do what I to make it a good one. I have good help with that, as do you. I am glad to be in touch with you here. @efgh1020

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This is the first time in 20 years I’ve talked to other people dealing with this horrific nerve pain. This means the world to me. Thank you. I love your analogy of “comet” pain. I completely get that. I have severe nerve pain that happens throughout my body now but it seems like the area speaking loudest is what I feel. Doctors ask what area is the worse and that is hard to answer because it changes. Sometimes I feel like a knife is stabbing into the rectum, shooting pains from the hip region down my legs, severe bearing down pain over sacrum like back labor, deep aching, horrible leg pain, feet pain, hands on fire and pain up my arms, strong vibration sensations in both hands simultaneously, Feeling that I’m wearing tight gloves and socks when I’m not, neck pain shooting over my head, painful scalp area on the right side of head with shooting pain and very tender to touch, migraines, upper right abdominal pain, intolerance to cold and hot temperature (cold air feels very painful and I overheat easily and I’m way past menopause), etc.

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