Living with Neuropathy - Welcome to the group

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

@iceblue

Yikes! That's a lot of side effects for 100 mg!!! I'm so grateful that the only side effect I've really struggled with is insomnia. My doctor was so surprised when I told him that on Friday (30 day check in). He suggested that I switch from taking my meds at night to the morning. I did that Saturday (yesterday) – and Wow! Not a good idea. Initially I had a burst of energy that lasted a couple of hours – and then I did a wild crash and burn. I felt totally zoned out. Definitely could have slept (but didn't). So today I've decided to try taking the meds at dinner time. Hopefully the timing will allow me to get a good night's sleep!

Also – my doctor switched me from 3 – 100 mg capsules to 1 – 300 mg capsule. I know the measure is the same – but I wonder if the 300 mg capsule somehow had a different impact? Thank God I don't have to work until Wednesday so I had a few more days to play with this, and I'll be even happier when my last day of work rolls around on Nov 8th…

BUT – the good news is: 300 mg once a day definitely deals with my pain 🙂

Jump to this post

Hi there @iceblue, Good to touch base with you. I am glad that you have found a medication that "deals with your pain". Re: the 300 mg capsule. Even though we know that it is the same as taking 3 – 100 mg capsules, we can't help but wonder if the dosage change was in some way responsible. All I can think of is the possibility of interaction with other items that you eat or drink at different times.

My dosage for gabapentin has changed several times in the last four years. I now take 1200 mg at about 9:30 pm. That gives it time to reduce the needles in my hands, wrists, and arms and offer some assurance of relaxing sleep. Check it out with a quick phone call to your provider or your pharmacist. If you have a patient portal program, you can just ask the question there.

Hang in there…..this is a time of exploration and experimentation. You have cheerleaders here. Find some joy today. Chris

.

REPLY

I would like to introduce myself as someone who has been living with Idiopathic Neuropathy for about 20 years. I have run the gamut with testing and several different neurologists. I've had EMG testing 2 different times with 2 different results, first no neuropathy or maybe small fiber, and just recently polyneuropathy. I really believe that vitamins, supplementation and nutrition would help. I've tried different meds but so far I'm dealing with the pain because I can't tolerate the side effects. I'll be 81 in January, and other than PIN, I'm in pretty good health. I'm wondering if anyone has had any experience as far as seeking out a professional who can help with nutritional and supplement guidance when it comes to neuropathy. The many different doctors I have seen over the years know absolutely nothing about neuropathy, that includes my Primary Care doctor, 2 podiatrists, 3 different Neurologists, and even physical therapy. One doctor told me it was called Idiopathic because the idiot doctors don't know anything about it, that made me smile. Thank you for listening. 🙂

REPLY

Hi @rosy33: Thanks for your quick reply, it made me smile also! I'll be 81 August 2020! No wonder my primary doctor didn't offer any help when I told her the electric shock I felt on top of my right foot, because no doctor knows! Could it be vitamin B1 and vitamin B12 deficiency? What is PIN? Thanks!

Liked by Leonard

REPLY
@tigreyes2004

I'm on Gabapentin & at first it made me so tired I couldn't take it but now I take 300 mg at night & it makes you sleep better & I am on 100 mg in the morning & another in the afternoon. I'm new to this Neuropathy & I have seen no help with the Gabapentin butI am taking Cymbalta with it & it gets me to wear I do function so I guess it helps to a degree. I just don't want to increase it anymore bc if you stopped it suddenly you could have seizures I have been told. Does anyone know a good med that gives relief.

Jump to this post

So – do you take 500 mg of Gabapentin in a 24 hour period – but space it out?

I know my dosage will increase over time, but like you I want to minimize it for as long as possible. I'm not worried about stopping the gabapentin as my doctor and pharmacist have both advised I am likely to be on it for the rest of my life. SFN is not reputed to be one of those health issues that spontaneously heals 😉

Liked by Leonard

REPLY
@ew100

Hi @rosy33: Thanks for your quick reply, it made me smile also! I'll be 81 August 2020! No wonder my primary doctor didn't offer any help when I told her the electric shock I felt on top of my right foot, because no doctor knows! Could it be vitamin B1 and vitamin B12 deficiency? What is PIN? Thanks!

Jump to this post

Good Morning @ew100, The letters PIN are short for Peripheral Idiopathic Neuropathy, something I learned on another support site (NeuroTalk.com). I believe depletion of the B vitamins, mainly B1,12 and 6 have a definite effect on neuropathy. My urologist has taken a course in health and wellness and is helping me with vitamins and supplements. I just joined her group this week and started taking a special packet of daily vitamins. I will meet with her 5 weeks from now to see if it makes a difference in the symptoms of my PIN. I decided to do this because I believe nutrition and vitamins are essential to our health, especially at our age. There are so many different brands and kinds of vitamins that can be very confusing. My daughter is a certified health and wellness coach, and has finally convinced me that "We are what we eat". I have given up sugar and drinking smoothies and herbal teas which have helped me to lose 30 pounds over a period of 2 years (mostly belly fat). My daughter can't prescribe any tests so that's where my urologist comes in. Every other doctor I have ever talked to about vitamins, nutrition or neuropathy doesn't know anything about any part of it, even the so-called Neurologists. I asked my PC why my ankle turns white when I flex it and why it's red and hot, her answer was, "I don't know". We can learn more here in these groups with others that are in the same predicament as we are. I am into the nutrition side of therapy rather than meds. I am trying to stay away from any prescriptions for as long as I can. I am more than willing to help if I can…..😍

REPLY
@rosy33

I would like to introduce myself as someone who has been living with Idiopathic Neuropathy for about 20 years. I have run the gamut with testing and several different neurologists. I've had EMG testing 2 different times with 2 different results, first no neuropathy or maybe small fiber, and just recently polyneuropathy. I really believe that vitamins, supplementation and nutrition would help. I've tried different meds but so far I'm dealing with the pain because I can't tolerate the side effects. I'll be 81 in January, and other than PIN, I'm in pretty good health. I'm wondering if anyone has had any experience as far as seeking out a professional who can help with nutritional and supplement guidance when it comes to neuropathy. The many different doctors I have seen over the years know absolutely nothing about neuropathy, that includes my Primary Care doctor, 2 podiatrists, 3 different Neurologists, and even physical therapy. One doctor told me it was called Idiopathic because the idiot doctors don't know anything about it, that made me smile. Thank you for listening. 🙂

Jump to this post

Hi @rosy33, I would like to add my welcome to Connect along with the other members. I also have idiopathic small fiber PN which I've had for well over 20 years (in my mid 70s now) but I only have the numbness. I didn't bother to get a diagnosis because when is started in my toes and I asked my primary care doc about it he said it was probably nerve damage and they could test for it. I said if they find it's nerve damage what can you do to fix it. When he told me nothing I said then why test for it if you can't fix it. That seems like eons ago now. When it progressed to just below the knees I started worrying and went to a neurologist who diagnosed me. Sad was I when he told me the same answer as the first doc when I asked what can you do for the numbness. He said there were no topical treatments or medications that would help with the numbness. That's when I made up my mind to learn everything I could about my condition and try to see if there was something that could help.

I have tried most every over the counter topical with zero success. Have also tried several types of TENS units with little to no success. That's about the time I found Connect which helped me immensely to know that I was not alone and learn what others have tried and what has helped them. I found a closed group on Facebook (http://www.facebook.com/groups/spnpd) and did a lot of reading about the supplements they use. I've been on them since Sept 2016 and feel that the supplements have slowed or possibly stopped the progression of the PN in my legs. When I started the numbness was just below the knees on both legs. Now it feels to be just above the ankles on both legs. They also have a website – http://solutions2pnpd.com/.

Liked by Leonard, rosy33

REPLY
@rosy33

Good Morning @ew100, The letters PIN are short for Peripheral Idiopathic Neuropathy, something I learned on another support site (NeuroTalk.com). I believe depletion of the B vitamins, mainly B1,12 and 6 have a definite effect on neuropathy. My urologist has taken a course in health and wellness and is helping me with vitamins and supplements. I just joined her group this week and started taking a special packet of daily vitamins. I will meet with her 5 weeks from now to see if it makes a difference in the symptoms of my PIN. I decided to do this because I believe nutrition and vitamins are essential to our health, especially at our age. There are so many different brands and kinds of vitamins that can be very confusing. My daughter is a certified health and wellness coach, and has finally convinced me that "We are what we eat". I have given up sugar and drinking smoothies and herbal teas which have helped me to lose 30 pounds over a period of 2 years (mostly belly fat). My daughter can't prescribe any tests so that's where my urologist comes in. Every other doctor I have ever talked to about vitamins, nutrition or neuropathy doesn't know anything about any part of it, even the so-called Neurologists. I asked my PC why my ankle turns white when I flex it and why it's red and hot, her answer was, "I don't know". We can learn more here in these groups with others that are in the same predicament as we are. I am into the nutrition side of therapy rather than meds. I am trying to stay away from any prescriptions for as long as I can. I am more than willing to help if I can…..😍

Jump to this post

The whole question of how Vitamin B fits into this is really interesting to me. The last time my B12 was tested it was twice as high as the normal range. Both my doctor and Neurologist said that a good thing and had nothing to do with the burning of my feet. My Neurologist said that in his career (15 years?) he has only seen one case of neuropathy that was due to B12 deficiency…

Liked by Leonard

REPLY

Hello, just signed up at Mayo Clinic so I could post in this thread.

I'm a 34 year old male with Small Fiber Neuropathy. I had all the neurological and blood tests to rule out any of the major concerns like diabetes, etc. So, therefore, we landed on alcohol as the cause since I had been an abuser (6+ drinks everyday for 10+ years). I have since stopped drinking any alcohol and it's been about 6 months. I have noticed a slight improvement, in that the "worst" of my symptoms isn't as bad as it was, but there's still definitely a very noticeable tingling and numbness in the bottom half of legs, top of head, tips of nose, fingers etc.

So I have a couple of questions for anyone else who may have experience living with alcohol caused SFN. 1) Did you ever fully heal or become symptom-less after quitting alcohol and if so how long did it take? 2) If I go as long as up to a couple of years without alcohol to try and heal, and it just simply appears that the damage I caused is permanent, would it be at all possible to become a VERY moderate drinker of alcohol without making the current SFN any worse? I'm talking like 2 drinks a week MAX and going months at a time without any drinks at all. Or is it that, once a person has SFN, any amount of alcohol at all will keep damaging the nerves? I haven't been able to find any info on this at all and doctors seem to think it's a crap shoot at this point whether I heal or not, so I'm looking for personal experiences.

Any information is greatly appreciated.

Thank you

Liked by Leonard

REPLY
@iceblue

The whole question of how Vitamin B fits into this is really interesting to me. The last time my B12 was tested it was twice as high as the normal range. Both my doctor and Neurologist said that a good thing and had nothing to do with the burning of my feet. My Neurologist said that in his career (15 years?) he has only seen one case of neuropathy that was due to B12 deficiency…

Jump to this post

I believe it is more about B6 rather than B12 which can exacerbate neuropathy if you have too much of it. My blood levels on B6 are normal so I decided to take a multi with 12.5 of B6 in it. After a week my feet and legs are bright red and hot to the touch. I developed a red rash around my right ankle and I have pain all day. I usually have most of the burning pain at night and am able to function during the day, but not since I've been on the B6. I stopped taking it today so I will post here in about a week to see if it helps. The doctors tell you that the B vitamins in combination will work, but I wonder how many of them take the time to research the adverse reactions of B6 and neuropathy.

REPLY
@maddholly

Hello, just signed up at Mayo Clinic so I could post in this thread.

I'm a 34 year old male with Small Fiber Neuropathy. I had all the neurological and blood tests to rule out any of the major concerns like diabetes, etc. So, therefore, we landed on alcohol as the cause since I had been an abuser (6+ drinks everyday for 10+ years). I have since stopped drinking any alcohol and it's been about 6 months. I have noticed a slight improvement, in that the "worst" of my symptoms isn't as bad as it was, but there's still definitely a very noticeable tingling and numbness in the bottom half of legs, top of head, tips of nose, fingers etc.

So I have a couple of questions for anyone else who may have experience living with alcohol caused SFN. 1) Did you ever fully heal or become symptom-less after quitting alcohol and if so how long did it take? 2) If I go as long as up to a couple of years without alcohol to try and heal, and it just simply appears that the damage I caused is permanent, would it be at all possible to become a VERY moderate drinker of alcohol without making the current SFN any worse? I'm talking like 2 drinks a week MAX and going months at a time without any drinks at all. Or is it that, once a person has SFN, any amount of alcohol at all will keep damaging the nerves? I haven't been able to find any info on this at all and doctors seem to think it's a crap shoot at this point whether I heal or not, so I'm looking for personal experiences.

Any information is greatly appreciated.

Thank you

Jump to this post

Hi @maddholly, Welcome to Connect. I have idiopathic small fiber PN. Once I found out alcohol damages nerves I stopped drinking. I have no medical training or background but from the reading I've done if you have neuropathy any alcohol is not going to help your body if it is trying to recover. Here are a couple of articles that may be helpful.

Alcoholic Polyneuropathy Issues & Treatment
https://www.alcohol.org/comorbid/polyneuropathy/

Alcoholic neuropathy
https://medlineplus.gov/ency/article/000714.htm

Alcoholic neuropathy: possible mechanisms and future treatment possibilities
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3370340/

I know the initial diagnosis of neuropathy can be pretty discouraging but if you learn as much as you can about the condition and find out what helps others, you might find something that helps you. Have you looked into taking any supplements or vitamins to help with the symptoms?

Liked by Leonard

REPLY
@rosy33

I believe it is more about B6 rather than B12 which can exacerbate neuropathy if you have too much of it. My blood levels on B6 are normal so I decided to take a multi with 12.5 of B6 in it. After a week my feet and legs are bright red and hot to the touch. I developed a red rash around my right ankle and I have pain all day. I usually have most of the burning pain at night and am able to function during the day, but not since I've been on the B6. I stopped taking it today so I will post here in about a week to see if it helps. The doctors tell you that the B vitamins in combination will work, but I wonder how many of them take the time to research the adverse reactions of B6 and neuropathy.

Jump to this post

I stopped taking B12 which seemed to make my SFN worse and then stopped the low dose B Complex, my neuro said if my levels were within range , no need. I do think the RAla, magnesium, biotin and omega 3’s have helped.

REPLY
@rosy33

I believe it is more about B6 rather than B12 which can exacerbate neuropathy if you have too much of it. My blood levels on B6 are normal so I decided to take a multi with 12.5 of B6 in it. After a week my feet and legs are bright red and hot to the touch. I developed a red rash around my right ankle and I have pain all day. I usually have most of the burning pain at night and am able to function during the day, but not since I've been on the B6. I stopped taking it today so I will post here in about a week to see if it helps. The doctors tell you that the B vitamins in combination will work, but I wonder how many of them take the time to research the adverse reactions of B6 and neuropathy.

Jump to this post

@rosy33 you are so right about B6. Here are some of the sites I've used in the past when researching B vitamins.

VITAMIN B6 TOXICITY
http://www.easy-immune-health.com/vitamin-b6-toxicity.html
B Vitamins for Neuropathy and Neuropathic Pain
https://www.omicsonline.org/open-access/b-vitamins-for-neuropathy-and-neuropathic-pain-2376-1318-1000161.php?aid=90896
B6 section it explains — too much or too little gives neuropathy
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4199287/
FDA Safety Alert: Biotin Can Affect Medical Test Results
http://cle.clinic/2G6Mp4y
NIH – Nutritional Neuropathies
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4199287/

Vitamin B6 Toxicity Revisited: A Case of Reversible Pyridoxine-associated Neuropathy and Disequilibrium. (P4.021)
http://n.neurology.org/content/90/15_Supplement/P4.021

Liked by Leonard, rwinney, rosy33

REPLY
@johnbishop

Hi @rosy33, I would like to add my welcome to Connect along with the other members. I also have idiopathic small fiber PN which I've had for well over 20 years (in my mid 70s now) but I only have the numbness. I didn't bother to get a diagnosis because when is started in my toes and I asked my primary care doc about it he said it was probably nerve damage and they could test for it. I said if they find it's nerve damage what can you do to fix it. When he told me nothing I said then why test for it if you can't fix it. That seems like eons ago now. When it progressed to just below the knees I started worrying and went to a neurologist who diagnosed me. Sad was I when he told me the same answer as the first doc when I asked what can you do for the numbness. He said there were no topical treatments or medications that would help with the numbness. That's when I made up my mind to learn everything I could about my condition and try to see if there was something that could help.

I have tried most every over the counter topical with zero success. Have also tried several types of TENS units with little to no success. That's about the time I found Connect which helped me immensely to know that I was not alone and learn what others have tried and what has helped them. I found a closed group on Facebook (http://www.facebook.com/groups/spnpd) and did a lot of reading about the supplements they use. I've been on them since Sept 2016 and feel that the supplements have slowed or possibly stopped the progression of the PN in my legs. When I started the numbness was just below the knees on both legs. Now it feels to be just above the ankles on both legs. They also have a website – http://solutions2pnpd.com/.

Jump to this post

I had to create a new account on FB. I deleted my original one because there was too much drama. I hope they will accept my new name. Thank you for the link. I am obsessed with the belief that vitamins and clean eating will help to relieve some of the misery we all share. I know we can all learn from each other because other people have no idea what we are going through.

REPLY
@maddholly

Hello, just signed up at Mayo Clinic so I could post in this thread.

I'm a 34 year old male with Small Fiber Neuropathy. I had all the neurological and blood tests to rule out any of the major concerns like diabetes, etc. So, therefore, we landed on alcohol as the cause since I had been an abuser (6+ drinks everyday for 10+ years). I have since stopped drinking any alcohol and it's been about 6 months. I have noticed a slight improvement, in that the "worst" of my symptoms isn't as bad as it was, but there's still definitely a very noticeable tingling and numbness in the bottom half of legs, top of head, tips of nose, fingers etc.

So I have a couple of questions for anyone else who may have experience living with alcohol caused SFN. 1) Did you ever fully heal or become symptom-less after quitting alcohol and if so how long did it take? 2) If I go as long as up to a couple of years without alcohol to try and heal, and it just simply appears that the damage I caused is permanent, would it be at all possible to become a VERY moderate drinker of alcohol without making the current SFN any worse? I'm talking like 2 drinks a week MAX and going months at a time without any drinks at all. Or is it that, once a person has SFN, any amount of alcohol at all will keep damaging the nerves? I haven't been able to find any info on this at all and doctors seem to think it's a crap shoot at this point whether I heal or not, so I'm looking for personal experiences.

Any information is greatly appreciated.

Thank you

Jump to this post

My husband was recently diagnosed with neuropathy probably caused by alcohol. His doc told him to stop all alcohol and it’s possible for the damaged nerves to heal over time. She said it could take years for full recovery and it’s not guaranteed. He has stopped alcohol altogether but it’s only been a few months. Hopefully this “cure” will work for both of you.

REPLY
@cim37343

My husband was recently diagnosed with neuropathy probably caused by alcohol. His doc told him to stop all alcohol and it’s possible for the damaged nerves to heal over time. She said it could take years for full recovery and it’s not guaranteed. He has stopped alcohol altogether but it’s only been a few months. Hopefully this “cure” will work for both of you.

Jump to this post

Thanks for the response and insight. Yeah, I'm definitely willing to give it a few years. Even though I abused alcohol, I have no issue not drinking. I would however be disappointed if I ruined any chances of me being able to have a "special occasion" drink later in life, being how young I am…

REPLY
Please login or register to post a reply.