Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

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

@avmcbellar

@resage Have you noticed changes with the humidity or barometric pressure? I experience both hot and cold but the intensity and occurrence increases with high humidity.

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I am in Pennsylvania Poconos for the summer and the humidity and temperature both rose during the recent heatwave in the 90's as well as the 80's, and can't separate them but it leads to burning feeling, but when it drops to the 70's and 60's, I experience the freezing feeling. Not sure if the humidity drops as well but it doesn't feel humid at that temperature.

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@avmcbellar

@resage Have you noticed changes with the humidity or barometric pressure? I experience both hot and cold but the intensity and occurrence increases with high humidity.

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@avmcbellar Hello. @resage This is an interesting phenomenon with the hot and cold. (My husband had the sudden onset of idiopathic peripheral neuropathy which early on appeared as a piece of glass in the foot, then thought it was a broken bone. only a few months later to get the diagnosis of PN and has had this for 3 years and while very painful fortunately seems to be have remained in the feet.) I'm not sure if he experiences cold in the winter but I do know that heat (heating pad, hot tub, etc.) aggravates the situation. I have a friend with MS who has also told me that heat aggravates that neurological condition as well.
He just started recently taking R-Alpha Lipoic Acid at lower doses. I believe there's been studies where higher doses (at least 600mg/day) helped relieve neuropathic pain and @lorirenee1 has had good luck with taking Benfotiamine which is a form of B1.
Have either of you been down that road with supplements?

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@greenacres

@avmcbellar Hello. @resage This is an interesting phenomenon with the hot and cold. (My husband had the sudden onset of idiopathic peripheral neuropathy which early on appeared as a piece of glass in the foot, then thought it was a broken bone. only a few months later to get the diagnosis of PN and has had this for 3 years and while very painful fortunately seems to be have remained in the feet.) I'm not sure if he experiences cold in the winter but I do know that heat (heating pad, hot tub, etc.) aggravates the situation. I have a friend with MS who has also told me that heat aggravates that neurological condition as well.
He just started recently taking R-Alpha Lipoic Acid at lower doses. I believe there's been studies where higher doses (at least 600mg/day) helped relieve neuropathic pain and @lorirenee1 has had good luck with taking Benfotiamine which is a form of B1.
Have either of you been down that road with supplements?

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My condition only started this past May, two months after my second Moderna shot. I am 75 and never experienced this before. I take 900ng of gabapentin daily and the only supplement I've tried so far is a nerve vitamin combination called N3 which was recommended by a podiatrist which I take daily; however I have no idea if it helps or not since my burning or ice cold symptoms seem to be either ok or terrible based on the day and I just can't seem to figure out why, if it's random, weather, stress, etc. Very frustrating. And it's mostly at night when lying down so sometimes I go to sleep sitting up in a sofa chair with my legs and feet straight down. When I finally fall asleep I don't feel the symptoms even though they exist, usually 2 or 3 AM.

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@greenacres

@avmcbellar Hello. @resage This is an interesting phenomenon with the hot and cold. (My husband had the sudden onset of idiopathic peripheral neuropathy which early on appeared as a piece of glass in the foot, then thought it was a broken bone. only a few months later to get the diagnosis of PN and has had this for 3 years and while very painful fortunately seems to be have remained in the feet.) I'm not sure if he experiences cold in the winter but I do know that heat (heating pad, hot tub, etc.) aggravates the situation. I have a friend with MS who has also told me that heat aggravates that neurological condition as well.
He just started recently taking R-Alpha Lipoic Acid at lower doses. I believe there's been studies where higher doses (at least 600mg/day) helped relieve neuropathic pain and @lorirenee1 has had good luck with taking Benfotiamine which is a form of B1.
Have either of you been down that road with supplements?

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Hi @greenacres thank you for sharing. So sorry for your husband’s pain. There are different levels of neuropathy. The cold and hot pain is because of the damage to the nerve cells. We lack the sensors for detecting temperature. Without our sensors we give our brain the wrong signals for our bodies to adjust. I find in the mornings my hand feels cold. Overall in high humidity my symptoms are more intense. Unfortunately there is no cure. Supplements, diets, and exercise can help alleviate symptoms for some people. It all depends on the cause. I have tried some supplements people posted that were helpful. I have always eaten a well balanced diet. No supplements helped me. I decided for me it is best to get my nutrients through the foods I consume. I have never had a health issue until my neuropathy was developed(4 years ago) in error after the
last surgical repair of my AVM(ArterioVenousMalformation). Thanks you for the suggestion. I am glad to see your husband found some relief. A low carbohydrate diet and exercise seems to help me. There is no “magic pill”. I chose not to get additional health problems through the side effects of medications. Who needs that? Instead, I have learned to help myself through trial and error which I know takes more effort but in the long run I believe it will be better for me. Wish your husband the best. I will be happy to answer any questions.

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@avmcbellar

Hi @greenacres thank you for sharing. So sorry for your husband’s pain. There are different levels of neuropathy. The cold and hot pain is because of the damage to the nerve cells. We lack the sensors for detecting temperature. Without our sensors we give our brain the wrong signals for our bodies to adjust. I find in the mornings my hand feels cold. Overall in high humidity my symptoms are more intense. Unfortunately there is no cure. Supplements, diets, and exercise can help alleviate symptoms for some people. It all depends on the cause. I have tried some supplements people posted that were helpful. I have always eaten a well balanced diet. No supplements helped me. I decided for me it is best to get my nutrients through the foods I consume. I have never had a health issue until my neuropathy was developed(4 years ago) in error after the
last surgical repair of my AVM(ArterioVenousMalformation). Thanks you for the suggestion. I am glad to see your husband found some relief. A low carbohydrate diet and exercise seems to help me. There is no “magic pill”. I chose not to get additional health problems through the side effects of medications. Who needs that? Instead, I have learned to help myself through trial and error which I know takes more effort but in the long run I believe it will be better for me. Wish your husband the best. I will be happy to answer any questions.

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Hi @avmcbellar Thank you for your informative post about the damaged nerve cells unable to detect temperatures and how you're managing dealing with this. I'm sorry to hear about your AVM surgery causing your neuropathy. A well balanced diet and getting the nutrients needed from food is clearly ideal. Exercise is number one on the list in our home and a low carbohydrate diet certainly makes sense. We eat very healthy, lots of vegetables but cutting down on bread is an area that can be improved upon.
The medications definitely bring along side effects (brain fog and loss of coordination to a small degree) but after having trying to go without them the pain was to much.
We're both hoping that the supplements might just help alleviate the symptoms enough so that it might be possible to quit taking the meds. Thanks again for sharing.

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@resage

My condition only started this past May, two months after my second Moderna shot. I am 75 and never experienced this before. I take 900ng of gabapentin daily and the only supplement I've tried so far is a nerve vitamin combination called N3 which was recommended by a podiatrist which I take daily; however I have no idea if it helps or not since my burning or ice cold symptoms seem to be either ok or terrible based on the day and I just can't seem to figure out why, if it's random, weather, stress, etc. Very frustrating. And it's mostly at night when lying down so sometimes I go to sleep sitting up in a sofa chair with my legs and feet straight down. When I finally fall asleep I don't feel the symptoms even though they exist, usually 2 or 3 AM.

Jump to this post

Hello @resage. I'm sorry about the onset of your neuropathy. My husband had both Moderna shots and it took only a couple of weeks for him to get back to his baseline. Not pushing medications because they all come with some sort of side effects but he has had good luck getting a good night's sleep by taking 5mg of Doxipene at night (such a low dose that it has to be compounded). Even at that low dose it still takes a couple of hours to get moving without the fog in the morning. @avmcbellar post is very helpful in explaining the hot or cold symptoms. The people in this group have provided helpful information in learning to manage and try different things to do to help alleviate the symptoms. You can easily spend days reading through the posts.

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@greenacres

Hi @avmcbellar Thank you for your informative post about the damaged nerve cells unable to detect temperatures and how you're managing dealing with this. I'm sorry to hear about your AVM surgery causing your neuropathy. A well balanced diet and getting the nutrients needed from food is clearly ideal. Exercise is number one on the list in our home and a low carbohydrate diet certainly makes sense. We eat very healthy, lots of vegetables but cutting down on bread is an area that can be improved upon.
The medications definitely bring along side effects (brain fog and loss of coordination to a small degree) but after having trying to go without them the pain was to much.
We're both hoping that the supplements might just help alleviate the symptoms enough so that it might be possible to quit taking the meds. Thanks again for sharing.

Jump to this post

You’re welcome @greenacres I hope your husband finds the supplements that will offer the help he needs to decrease his neuropathy symptoms. I have neuropathy on the left side of my body. I get the numbness, tingling, and burning feeling. I have my right side to tell me what is normal. At times when my left leg felt burning hot I touched it against my right leg and discovered my right leg was warmer. The brain can play games with the mind when the brain doesn’t get the proper signals. Tell her your husband to be careful near a stove or when handling frozen items. He can easily get burns not feeling the appropriate temperatures. I was lucky to have not sustained injuries from handling frozen foods too long with my left hand. Wish you well.

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I had resurgence of more intense peripheral neuropathy symptoms after two Moderna shots for Covid. Maybe that impacted me? Age 73.

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@avmcbellar

You’re welcome @greenacres I hope your husband finds the supplements that will offer the help he needs to decrease his neuropathy symptoms. I have neuropathy on the left side of my body. I get the numbness, tingling, and burning feeling. I have my right side to tell me what is normal. At times when my left leg felt burning hot I touched it against my right leg and discovered my right leg was warmer. The brain can play games with the mind when the brain doesn’t get the proper signals. Tell her your husband to be careful near a stove or when handling frozen items. He can easily get burns not feeling the appropriate temperatures. I was lucky to have not sustained injuries from handling frozen foods too long with my left hand. Wish you well.

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Thank you @avmcbellar Great advice. Wishing you well too.

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@lsatenst1

I have been diagnosed with poly-neuropathy due to nerve damage caused by arthritis in my lumbar and sacral regions. I’ve taken gabapentin and lyrica both of which make me too tired to be useful, physical therapy,epidural all to no avail. I am pursuing other avenues such as surgery and various other treatments.I like to exercise quite a bit and have been having difficulty doing so.

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SCS implant has been very helpful for me. I cut my gabapentin in half from nine (300mg) pills per day to five. I was told that is pretty good. I’m pleased with the results. Surgery was Feb 2020.

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@brklimeks

SCS implant has been very helpful for me. I cut my gabapentin in half from nine (300mg) pills per day to five. I was told that is pretty good. I’m pleased with the results. Surgery was Feb 2020.

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What is an SCS implant?

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@arlenereiss55

What is an SCS implant?

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Sorry. SCS is a spinal cord stimulator which interrupts the pain signal from affected area to the brain.
https://www.bostonscientific.com/en-US/patients/about-your-device/spinal-cord-stimulator-systems-scs.html

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