In late Dec 2019 a sudden and sever pain in my right leg and foot led to an MRI in early January 2020 a Spinal MRI found a "Right-sided lateral disk herniation at L5/S1 affecting the L5 nerve." This was causing the pain in the right leg & foot. I describe the pain as a tightness across the entire foot & ankle and especially across the instep. A feeling as if my skin has shrunk. Also, the bottom of my feet feel like dry leather when I curl my toes. When I walk it feels like I'm walking on crumbled up socks.
In February 2020 a nerve velocity conduction (NVC) and a electromyography study showed mild "sensory diffuse peripheral neuropathy" (PN) on both legs. This is in addition to the pain from the L5/S1 pinched nerve. Surgery at the end of March 2020 successfully removed the compression on the L5 nerve. Complete recovery, when the nerve is no longer inflamed, is expected to take at least 1 more month. My Drs. expect most of the pain - tightness - in my right foot/ankle to resolve with the healing of the nerve. However, they expect the idopathic PN will still there. I'm on 1200mg Gabapentin a day but I'm not sure it is having any positive effect. I'd love to hear from anyone that has a similar symptom with their sensory PN. But here is what's strange about my symptoms: When I awake each day the pain in both feet is gone. BUT by noon both feet start to feel tight and painful. This pain continues to get worse throughout the day and by bedtime it's up to an 8-10. It's difficult to fall asleep with the pain but somehow, I manage to sleep. When I awake the next morning, again no pain. This pattern has been occurring even before the surgery 5 weeks ago. Does anyone else have this weird pattern? From all my research I have not found any articles that explain PN going away during the night only to return mid-morning the next day. It's my belief the pain in both the right foot and left are caused by inflammation of the L5 nerves aggravated by being on my feet and sitting during the day. I can't prove this until I'm able to get another MRI. Plus, the level of PN pain is too extreme to be the result of "Mild sensory diffused PN" to quote the neurologist.
Further supporting my belief that I don't have significant - based on the pain levels - PN is the following. I have tried most of the therapies that fellow sufferers have listed on this forum with zero relief: CBD salve, 500mg full spectrum Hemp extract; DMSO cream,70% DMSO, 30% Aloe Vera; Gummies, 50mg CBD each; and lately Phenytoin 10% PLO gel. Has anyone used all these and found no relief?
I'm hoping to try the Scrambler when California lifts the stay-at-home order. Has anyone with PN tried the Scrambler therapy without results? They're promotional material claims after just a few of the 10 sessions they recommend PN symtoms have been drastically reduced. Anyone tried the Scrambler?
I'd appreciate hearing from anyone with experiences similar to mine, i.e., pain building during the day into late evening only to be gone upon waking.
Thanks,
James
James, my wife Linda has had PN in her feet since 2014. It started for the first year or two by showing up in the late afternoon. In the morning and early afternoon, no problem. But over the course of years it has started earlier and earlier in the day until now she wakes up in the morning with the bad pain. Later in the day it usually eases somewhat but then kicks back into gear by the early evening and continues to worsen and worsen until she goes to bed. She usually sleeps, which is a blessing. I think maybe the fact that your body and nerves get rest when you sleep has something to do with why you are better in the morning. Hopefully you will continue to get at least that respite during the day. Nerve pain is the weirdest most inexplicable thing. Everyone experiences it a little differently and it changes over time for each person it seems. Linda has tried gabapentin and it did nothing for her except provide awful side effects. She also tried cbd oil with no help from that. She tried lidocaine cream, dmso, different essential oils, off the shelf homeopathics, and a few things I can't even remember, again no lasting help from any of them. @lorirenee1 has mentioned that she did try scrambler therapy. If you enter the word scrambler into the search at the top of this page some of those posts will appear for you to read. She found a good guy in Illinois that she went to. Another poster to this forum, Jim @jimhd got a spinal cord stimulator which gave him significant relief for a year or two but has mentioned recently that he no longers gets any benefit from it. We all seem to be shooting blind at this thing hoping we will hit something. That's all you can do with PN, at least so far. I do think some pieople have derived enough benefit from the Calmere (scrambler) therapy that it might be worth looking into. I am waiting patiently to hear the results of the phase 3 trials of a substance called tertodotoxin (actually a poison derived from pufferfish) to complete being performed by Wex pharmaceuticals. Troublingly I just looked and Wex has taken down some old pages I had links to regarding this. I hope that doesn't me they have quit researching it as it sounded like a very promising pain relief avenue for PN sufferers. Here is a link from 2019 regarding it which I just went and found: https://www.sciencedaily.com/releases/2019/06/190612141435.htm
Good luck James, I hope you have better luck with your PN then some others.
Hello Ali or is it @rabbit10 (?) and others. I am so new at blogs but wondered if I can be in on this discussion with @martid and @grandma41 ?? Thanks so much, Sunnyflower
Hi @sunnyflower and welcome. There's nothing to being included in this ongoing discussion except start posting. You are right, nerve disease is a terrible affliction. Feel free to describe your situation in detail and include anything you have tried to relieve the pain. I got started on this and other forums because of the frustration with reading all the info that exists online of medical websites written by health practitioners. I found that I got more practical and useful info from the people who were actually living with peripheral neuropathy rather than merely researching it. I think you may also find this more useful for you as well. Best to you, Hank
Hello you beautiful people. The numbness is unbelievable. How can one have SEVERE sting/burn and numbness at the same time EVERYWHERE?? Nerve disease has to be the worst! Warm regards, Sunnyflower
@sunnyflower numbness and pain together means that both your small and large fibers are involved, one causing the numbness, the other causing the pain.
@sunnyflower numbness and pain together means that both your small and large fibers are involved, one causing the numbness, the other causing the pain.
Hi @steeldove, can I ask what your source is for numbness and pain together means that both your small and large fiber nerves are involved? I've never read anything where numbness is caused by one and pain by the other. Interesting for me since my symptoms for my diagnosis of idiopathic small fiber PN is numbness only. Thanks for any information you can share!
Hi @steeldove, can I ask what your source is for numbness and pain together means that both your small and large fiber nerves are involved? I've never read anything where numbness is caused by one and pain by the other. Interesting for me since my symptoms for my diagnosis of idiopathic small fiber PN is numbness only. Thanks for any information you can share!
@johnbishop I was given that information by a osteopathic physician who specializes in osteopathic manual manipulation and who I see for pain management. He explained that one of the fibers is sending to my brain a message that's causing numbness and the other fibers is sending the pain message. Of course, his explanation was much more detailed, but that was the gist of it.
Hi @steeldove, can I ask what your source is for numbness and pain together means that both your small and large fiber nerves are involved? I've never read anything where numbness is caused by one and pain by the other. Interesting for me since my symptoms for my diagnosis of idiopathic small fiber PN is numbness only. Thanks for any information you can share!
@johnbishop I was given that information by a osteopathic physician who specializes in osteopathic manual manipulation and who I see for pain management. He explained that one of the fibers is sending to my brain a message that's causing numbness and the other fibers is sending the pain message. Of course, his explanation was much more detailed, but that was the gist of it.
Thanks @steeldove. I've just not seen anything describing the difference between numbness and pain. We had a guest neurologist researcher at the Minnesota Neuropathy Association a few years ago that mentioned the same thing that my Mayo neurologist told me that only about 20% or less of the people with neuropathy have only numbness as a symptom. I guess I should be thankful that I'm in the 20% category. Also have never read anything on NIH or other neuropathy sites that mentions it so was just curious.
Thanks @steeldove, I've read both of those and didn't see any specific reference for numbness being a symptom of only small fiber or only large fiber nerves but then I may not be understanding what I read 🙂
Today, half of my left foot is black and blue and has a big lump in the middle. I don't know what happened. It should be very painful, it should have been painful when it happened. It must be very numb now. Peggy
Today, half of my left foot is black and blue and has a big lump in the middle. I don't know what happened. It should be very painful, it should have been painful when it happened. It must be very numb now. Peggy
Hi Peggy, it sounds like you might want to call your doctor about this. It may be something serious. Especially since you were unaware of anything happening to cause it.
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James, my wife Linda has had PN in her feet since 2014. It started for the first year or two by showing up in the late afternoon. In the morning and early afternoon, no problem. But over the course of years it has started earlier and earlier in the day until now she wakes up in the morning with the bad pain. Later in the day it usually eases somewhat but then kicks back into gear by the early evening and continues to worsen and worsen until she goes to bed. She usually sleeps, which is a blessing. I think maybe the fact that your body and nerves get rest when you sleep has something to do with why you are better in the morning. Hopefully you will continue to get at least that respite during the day. Nerve pain is the weirdest most inexplicable thing. Everyone experiences it a little differently and it changes over time for each person it seems. Linda has tried gabapentin and it did nothing for her except provide awful side effects. She also tried cbd oil with no help from that. She tried lidocaine cream, dmso, different essential oils, off the shelf homeopathics, and a few things I can't even remember, again no lasting help from any of them. @lorirenee1 has mentioned that she did try scrambler therapy. If you enter the word scrambler into the search at the top of this page some of those posts will appear for you to read. She found a good guy in Illinois that she went to. Another poster to this forum, Jim @jimhd got a spinal cord stimulator which gave him significant relief for a year or two but has mentioned recently that he no longers gets any benefit from it. We all seem to be shooting blind at this thing hoping we will hit something. That's all you can do with PN, at least so far. I do think some pieople have derived enough benefit from the Calmere (scrambler) therapy that it might be worth looking into. I am waiting patiently to hear the results of the phase 3 trials of a substance called tertodotoxin (actually a poison derived from pufferfish) to complete being performed by Wex pharmaceuticals. Troublingly I just looked and Wex has taken down some old pages I had links to regarding this. I hope that doesn't me they have quit researching it as it sounded like a very promising pain relief avenue for PN sufferers. Here is a link from 2019 regarding it which I just went and found: https://www.sciencedaily.com/releases/2019/06/190612141435.htm
Good luck James, I hope you have better luck with your PN then some others.
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1 ReactionHi @sunnyflower and welcome. There's nothing to being included in this ongoing discussion except start posting. You are right, nerve disease is a terrible affliction. Feel free to describe your situation in detail and include anything you have tried to relieve the pain. I got started on this and other forums because of the frustration with reading all the info that exists online of medical websites written by health practitioners. I found that I got more practical and useful info from the people who were actually living with peripheral neuropathy rather than merely researching it. I think you may also find this more useful for you as well. Best to you, Hank
@sunnyflower numbness and pain together means that both your small and large fibers are involved, one causing the numbness, the other causing the pain.
Hi @steeldove, can I ask what your source is for numbness and pain together means that both your small and large fiber nerves are involved? I've never read anything where numbness is caused by one and pain by the other. Interesting for me since my symptoms for my diagnosis of idiopathic small fiber PN is numbness only. Thanks for any information you can share!
@johnbishop I was given that information by a osteopathic physician who specializes in osteopathic manual manipulation and who I see for pain management. He explained that one of the fibers is sending to my brain a message that's causing numbness and the other fibers is sending the pain message. Of course, his explanation was much more detailed, but that was the gist of it.
@johnbishop Take a look at these: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6072686/ and https://neuropathycommons.org/neuropathy/neuropathy-overview
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1 ReactionThanks @steeldove. I've just not seen anything describing the difference between numbness and pain. We had a guest neurologist researcher at the Minnesota Neuropathy Association a few years ago that mentioned the same thing that my Mayo neurologist told me that only about 20% or less of the people with neuropathy have only numbness as a symptom. I guess I should be thankful that I'm in the 20% category. Also have never read anything on NIH or other neuropathy sites that mentions it so was just curious.
Thanks @steeldove, I've read both of those and didn't see any specific reference for numbness being a symptom of only small fiber or only large fiber nerves but then I may not be understanding what I read 🙂
Today, half of my left foot is black and blue and has a big lump in the middle. I don't know what happened. It should be very painful, it should have been painful when it happened. It must be very numb now. Peggy
Hi Peggy, it sounds like you might want to call your doctor about this. It may be something serious. Especially since you were unaware of anything happening to cause it.
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