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

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://www.patientrevolution.org/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?

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.

@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?

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.

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.

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.

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

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.

@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

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.