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?

@airpod

Hello, I'm new to this group.. I'm struggling with neuropathy from an unknown source as of now. My family Dr told me it was from prediabetes but my A1C is usually around 5.7 but last check up was 5.3..
I first noticed a problem about 2 years ago when I was dressing up to go out and I could not walk in my heels. My toes felt broken. Then I started noticing the tingling and burning in my feet. I visited a podiatrist who took xray and examed my feet and he said perephial neuropathy.. He sent me to a neurologist who I didn't feel very confident in who did a study of tests and said the same thing.. Well it's been 2 years 3 doctors and I still don't agree with the diagnosis.. I've questioned my medical Dr several times about it and he says we may never know the cause. He put me on Gabapentin but I refused thev300 mg and I'm taking 100 mg 3times most days .. I'm worried about not knowing the cause and being able to treat it so it doesn't get worse. It has since started tingling in my left hand and sometimes my leg muscles feel weak.. My Dr said we are treating it.. I said how? He said with Gabapentin.. Is that REALLY treating it or just putting a bandaid on it? Idk.. I've had several major abdominal surgeries. My lower belly is still numb. I asked if this could be why I'm having problems. He said no..
It is causing me great anxiety not knowing.. Anyone have any suggestions for me?..

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@airpod
Hi, and welcome to Connect. I'm sorry to hear that you are afflicted with peripheral neuropathy (PN). In addition to the 2 tests Leonard mentioned there is a third test that many people have done to test for PN called a skin punch biopsy. Did they do any of these 3 tests on you? It sounds like you are not in disagreement with the diagnosis of PN, just about what they say caused it. Since you mentioned surgery I know that a lot of people believe their cases of PN were caused by surgery. One thing to know is there are many different things that can cause it, and I'm not sure anyone knows what they all are. Many people never figure out what caused theirs. For some, like my wife, its a no-brainer, she got her first symptoms the day after her 2nd chemo infusion. When someone says they are treating you with gabapentin, I believe they mean treating the pain symptoms, not the PN itself. I have not heard of anyone taking such a low dose of it. You probably already know that many people believe there is no cure for neuropathy. I believe there is no obvious cure right now but that one will likely appear in the next few years, just a feeling I have.

Sorry that your PN has started to move from your feet into your hand and upper leg. Everyone's case is different it seems. My wife has had it for 6 years and it has stayed in her feet and ankles 99% of the time, with burning, itching and some paresthesia (pins and needles) also. It is very debilitating and causes her to be very fatigued. My wife, like many others, tries everything she hears about to alleviate her pain short of taking drugs (the one exception was gabapentin for 2-3 months a couple years back -no relief from that for her, just bad side effects). Currently she is trying cold laser light therapy using a unit we purchased (been doing it for 2 weeks so far, still not sure if it's going to help her).

So, if you spend some time here in this forum, particularly reading the neuropathy group posts, you will learn a lot more of actual PN sufferers experiences. We have learned a lot since we started coming here. Hope you do as well. Best, Hank

REPLY

Thank you so much for responding. Yes I'm very sensitive to meds. My Dr wanted to start me at 300mg 3 times a day but I refused. So he agreed to start me slow. The 100mg makes me sleepy😔
But I'm about at the place where I'm ready to increase it. I have started having numbness in both large toes and my legs starts feeling weak usually starting after lunch.
I did have a nerve conduction test about 2 years ago and the Dr said no nerve damage.. the Dr was an ELDERLY woman who was nice but acted very confused. I'd really have considered asking for a 2nd opinion with another neurologist but I don't know what to do

Liked by Leonard, Hank

REPLY
@airpod

Thank you so much for responding. Yes I'm very sensitive to meds. My Dr wanted to start me at 300mg 3 times a day but I refused. So he agreed to start me slow. The 100mg makes me sleepy😔
But I'm about at the place where I'm ready to increase it. I have started having numbness in both large toes and my legs starts feeling weak usually starting after lunch.
I did have a nerve conduction test about 2 years ago and the Dr said no nerve damage.. the Dr was an ELDERLY woman who was nice but acted very confused. I'd really have considered asking for a 2nd opinion with another neurologist but I don't know what to do

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Hi- i am so sorry that you are suffering. I was on 300 mg 3 x day of gabapentin as I was diagnosed with reflex sympathetic dystrophy (crps) back in 2007. The pain has gotten so bad but dr thought the gabapengin was not working. they told me to go down to 1 x 300 mg- I saw no difference- then I stopped- no difference except not sleeping. I had an emg/eeg test done on both legs after not being able to walk for 4 days. I have poly neuropathy in both legs- right leg has very little response at all. Now it appears I may have adrenal insuffiency and just saw my 5th dr to hopefully get some help. Dr. Said you need to be very aware as to if the medication is working or not. God bless I hope they are helping you. Hugs and feel better.

Liked by Hank

REPLY
@jesfactsmon

@airpod
Hi, and welcome to Connect. I'm sorry to hear that you are afflicted with peripheral neuropathy (PN). In addition to the 2 tests Leonard mentioned there is a third test that many people have done to test for PN called a skin punch biopsy. Did they do any of these 3 tests on you? It sounds like you are not in disagreement with the diagnosis of PN, just about what they say caused it. Since you mentioned surgery I know that a lot of people believe their cases of PN were caused by surgery. One thing to know is there are many different things that can cause it, and I'm not sure anyone knows what they all are. Many people never figure out what caused theirs. For some, like my wife, its a no-brainer, she got her first symptoms the day after her 2nd chemo infusion. When someone says they are treating you with gabapentin, I believe they mean treating the pain symptoms, not the PN itself. I have not heard of anyone taking such a low dose of it. You probably already know that many people believe there is no cure for neuropathy. I believe there is no obvious cure right now but that one will likely appear in the next few years, just a feeling I have.

Sorry that your PN has started to move from your feet into your hand and upper leg. Everyone's case is different it seems. My wife has had it for 6 years and it has stayed in her feet and ankles 99% of the time, with burning, itching and some paresthesia (pins and needles) also. It is very debilitating and causes her to be very fatigued. My wife, like many others, tries everything she hears about to alleviate her pain short of taking drugs (the one exception was gabapentin for 2-3 months a couple years back -no relief from that for her, just bad side effects). Currently she is trying cold laser light therapy using a unit we purchased (been doing it for 2 weeks so far, still not sure if it's going to help her).

So, if you spend some time here in this forum, particularly reading the neuropathy group posts, you will learn a lot more of actual PN sufferers experiences. We have learned a lot since we started coming here. Hope you do as well. Best, Hank

Jump to this post

Thank you for responding. In still learning to maneuver about on this site😁. I have not had the biopsy test and I was not very confident with the neurologist I saw. When I first mentioned the pins and needles and burning the Dr just said perephial neuropathy and Gabapentin then he was finished. I'm trying to Google and seek ways I can find out exactly what I have and what kind of Dr I need to see. I called another neurologist but I have to have my Dr refer me. It's just so frustrating but I need to know the cause.. I think I can handle it better if I know that I've been properly tested and I know what I'm dealing with. Right Now it keeps me anxious. Will I lose the ability to walk? Will the numbness get worse? Will I lose control? These are questions that stays in the back of my mind.

Liked by Hank

REPLY
@specialty555

Hi- i am so sorry that you are suffering. I was on 300 mg 3 x day of gabapentin as I was diagnosed with reflex sympathetic dystrophy (crps) back in 2007. The pain has gotten so bad but dr thought the gabapengin was not working. they told me to go down to 1 x 300 mg- I saw no difference- then I stopped- no difference except not sleeping. I had an emg/eeg test done on both legs after not being able to walk for 4 days. I have poly neuropathy in both legs- right leg has very little response at all. Now it appears I may have adrenal insuffiency and just saw my 5th dr to hopefully get some help. Dr. Said you need to be very aware as to if the medication is working or not. God bless I hope they are helping you. Hugs and feel better.

Jump to this post

How did they find adrenal insufficiency, blood test? See I don't know the difference with poly or perephial nueropathy

Liked by sunnyflower

REPLY
@airpod

Hello, I'm new to this group.. I'm struggling with neuropathy from an unknown source as of now. My family Dr told me it was from prediabetes but my A1C is usually around 5.7 but last check up was 5.3..
I first noticed a problem about 2 years ago when I was dressing up to go out and I could not walk in my heels. My toes felt broken. Then I started noticing the tingling and burning in my feet. I visited a podiatrist who took xray and examed my feet and he said perephial neuropathy.. He sent me to a neurologist who I didn't feel very confident in who did a study of tests and said the same thing.. Well it's been 2 years 3 doctors and I still don't agree with the diagnosis.. I've questioned my medical Dr several times about it and he says we may never know the cause. He put me on Gabapentin but I refused thev300 mg and I'm taking 100 mg 3times most days .. I'm worried about not knowing the cause and being able to treat it so it doesn't get worse. It has since started tingling in my left hand and sometimes my leg muscles feel weak.. My Dr said we are treating it.. I said how? He said with Gabapentin.. Is that REALLY treating it or just putting a bandaid on it? Idk.. I've had several major abdominal surgeries. My lower belly is still numb. I asked if this could be why I'm having problems. He said no..
It is causing me great anxiety not knowing.. Anyone have any suggestions for me?..

Jump to this post

Hello @airpod, I would like to add my welcome to Connect along with @jakedduck1, @jesfactsmon and others. I was sort of told the same thing by my primary care doc about the prediabetes and my numbers were similar to yours. I don't have the pain with my neuropathy, just the numbness and gabapentin doesn't help with that symptom. The gabapentin is only used to treat the symptom and really does nothing to fix the problem which is damaged, dead, or compressed nerves – just my opinion and I have no medical background but have done a lot of research on the subject. There are a few more discussions you may find helpful.

– Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
– Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
– Supplement recommendations: What can help neuropathy?: https://connect.mayoclinic.org/discussion/supplement-recommendations-can-help/

I'm happy you found Connect because probably the best thing you can do to help is to learn as much as you can about your condition and become a better advocate for your health. There is a wealth of information in patient experience here on Connect. You mentioned you have numbness in your lower belly area and that you were wondering if it could be related to previous abdominal surgeries you've had. Here is an article that may provide more information for you on the subject – Numbness and Tingling After Surgery: https://www.verywellhealth.com/numbness-and-tingling-after-surgery-3156878

Are you able to share what types of abdominal surgery you had?

REPLY
@airpod

Thank you for responding. In still learning to maneuver about on this site😁. I have not had the biopsy test and I was not very confident with the neurologist I saw. When I first mentioned the pins and needles and burning the Dr just said perephial neuropathy and Gabapentin then he was finished. I'm trying to Google and seek ways I can find out exactly what I have and what kind of Dr I need to see. I called another neurologist but I have to have my Dr refer me. It's just so frustrating but I need to know the cause.. I think I can handle it better if I know that I've been properly tested and I know what I'm dealing with. Right Now it keeps me anxious. Will I lose the ability to walk? Will the numbness get worse? Will I lose control? These are questions that stays in the back of my mind.

Jump to this post

@airpod – Here's a website you might want to bookmark for neuropathy – helps answer a lot of neuropathy questions.

Neuropathy Commons — https://neuropathycommons.org/

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@jesfactsmon

@airpod
Hi, and welcome to Connect. I'm sorry to hear that you are afflicted with peripheral neuropathy (PN). In addition to the 2 tests Leonard mentioned there is a third test that many people have done to test for PN called a skin punch biopsy. Did they do any of these 3 tests on you? It sounds like you are not in disagreement with the diagnosis of PN, just about what they say caused it. Since you mentioned surgery I know that a lot of people believe their cases of PN were caused by surgery. One thing to know is there are many different things that can cause it, and I'm not sure anyone knows what they all are. Many people never figure out what caused theirs. For some, like my wife, its a no-brainer, she got her first symptoms the day after her 2nd chemo infusion. When someone says they are treating you with gabapentin, I believe they mean treating the pain symptoms, not the PN itself. I have not heard of anyone taking such a low dose of it. You probably already know that many people believe there is no cure for neuropathy. I believe there is no obvious cure right now but that one will likely appear in the next few years, just a feeling I have.

Sorry that your PN has started to move from your feet into your hand and upper leg. Everyone's case is different it seems. My wife has had it for 6 years and it has stayed in her feet and ankles 99% of the time, with burning, itching and some paresthesia (pins and needles) also. It is very debilitating and causes her to be very fatigued. My wife, like many others, tries everything she hears about to alleviate her pain short of taking drugs (the one exception was gabapentin for 2-3 months a couple years back -no relief from that for her, just bad side effects). Currently she is trying cold laser light therapy using a unit we purchased (been doing it for 2 weeks so far, still not sure if it's going to help her).

So, if you spend some time here in this forum, particularly reading the neuropathy group posts, you will learn a lot more of actual PN sufferers experiences. We have learned a lot since we started coming here. Hope you do as well. Best, Hank

Jump to this post

Hi Hank, FYI, I take 300 mg. gabapentin 1x at night and I am good for 24 hrs. I could probably take more during the day but prefer not to and put up with the discomfort. I have read that less is better with gabapentin, better to start off slow and increase the dosage if/when necessary. My Dr. originally prescribed a higher dose to be taken 3x day but I couldn’t function so I cut back. Everyone’s body reacts differently to drugs, so I think often better to start off slowly. P.S. I do not take any other prescription meds so that may be a factor. Helen

Liked by Hank

REPLY
@airpod

Thank you so much for responding. Yes I'm very sensitive to meds. My Dr wanted to start me at 300mg 3 times a day but I refused. So he agreed to start me slow. The 100mg makes me sleepy😔
But I'm about at the place where I'm ready to increase it. I have started having numbness in both large toes and my legs starts feeling weak usually starting after lunch.
I did have a nerve conduction test about 2 years ago and the Dr said no nerve damage.. the Dr was an ELDERLY woman who was nice but acted very confused. I'd really have considered asking for a 2nd opinion with another neurologist but I don't know what to do

Jump to this post

Hi Airpod, small fiber neuropathy is not detectable from nerve conduction testing, that is possibly why your doctor may have appeared confused; a skin punch biopsy can determine SFN. I also was negative on these tests (and all labs) My diagnosis was idiopathic SFN. Most people on this forum have not found any relief for numbness unfortunately so our goal has been to find pain relief. I wish you well in finding all the answers you need and some positive outcomes. Helen

REPLY
@airpod

Thank you for responding. In still learning to maneuver about on this site😁. I have not had the biopsy test and I was not very confident with the neurologist I saw. When I first mentioned the pins and needles and burning the Dr just said perephial neuropathy and Gabapentin then he was finished. I'm trying to Google and seek ways I can find out exactly what I have and what kind of Dr I need to see. I called another neurologist but I have to have my Dr refer me. It's just so frustrating but I need to know the cause.. I think I can handle it better if I know that I've been properly tested and I know what I'm dealing with. Right Now it keeps me anxious. Will I lose the ability to walk? Will the numbness get worse? Will I lose control? These are questions that stays in the back of my mind.

Jump to this post

@airpod I am diagnosed with pheripherial neuropathy. I had the test done and it was bye "Wear shoes at all times" "you habe pheripherial neuropathy. Now my pain managment doctor says she thinks it is poly neuropathy. What/ how much difference and do I have both? Thank you.

REPLY

I have poly neuropathy but now they are trying to figure out adrenal glands issue. Did they give you any ideas on what to do with neuropathy?

REPLY
@airpod

Thank you for responding. In still learning to maneuver about on this site😁. I have not had the biopsy test and I was not very confident with the neurologist I saw. When I first mentioned the pins and needles and burning the Dr just said perephial neuropathy and Gabapentin then he was finished. I'm trying to Google and seek ways I can find out exactly what I have and what kind of Dr I need to see. I called another neurologist but I have to have my Dr refer me. It's just so frustrating but I need to know the cause.. I think I can handle it better if I know that I've been properly tested and I know what I'm dealing with. Right Now it keeps me anxious. Will I lose the ability to walk? Will the numbness get worse? Will I lose control? These are questions that stays in the back of my mind.

Jump to this post

@airpod @johnbishop I've come to realize that seeing neurologists for neuropathy is a waste of time as they seem to do little beyond offering Gabapentin, Lyrica and Cymbalta. I suspect that many members of MayoConnect are more knowledgeable about neuropathy than the average neurologist. The only neurologist that really helped me was a Russian-trained female neurologist I saw when I was living in Massachusetts after being diagnosed with SFN at Mayo Clinic (January 2017, six months after I first experienced symptoms in my feet). She admitted that very little was known about SFN, its causes and treatments. We had serious discussions, and she recognized that I was willing to do whatever might be needed to find the help I needed. When she encouraged me to get an appointment with Dr. Louise Oaklander (the SFN "guru") in Boston, I began the process. Unfortunately, before I was able to get that appointment, I moved to Missouri. Then I waited months for an appointment with a neurologist at Washington University Medical School in St. Louis. Total waste of time: More tests, try Gabapentin, Lyrica or Cymbalta and see a movement disorders neurologist. Then another Mayo neurologist who said my problem was in my cervical spine and suggested surgery, adding that I didn't have neuropathy!!! Meanwhile, neuropathy has overtaken most of my body. I'd about given up thinking I'd find the help I needed at Mayo Clinic until earlier this year when I decided that I needed to find Pain Medicine doctors at Mayo, which I have done. I saw them last summer, and recently returned from Rochester, MN, where I underwent a 7-day trial with a spinal cord stimulator. Now I must decide if I want a SCS implanted in my body.

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@specialty555

I have poly neuropathy but now they are trying to figure out adrenal glands issue. Did they give you any ideas on what to do with neuropathy?

Jump to this post

@specialty555 Welcome to Mayo Clinic Connect. It sounds like you are looking for advice on how to treat neuropathy. Below are two discussions about neuropathy that you may find useful.

– Anyone here dealing with peripheral neuropathy? https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/

– Peripheral Neuropathy – Stretching and Exercise https://connect.mayoclinic.org/discussion/peripheral-neuropathy-stretching-and-exercise/

@lorirenee1 @jesfactsmon @sunnyflower @johnbishop @maryv449 are all active members in the neuropathy group and they may be able to help you answer your question.

@specialty555 Would you tell me more about your neuropathy? Where on your body do you experience neuropathy and how long have you had these symptoms?

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@summertime4

@airpod I am diagnosed with pheripherial neuropathy. I had the test done and it was bye "Wear shoes at all times" "you habe pheripherial neuropathy. Now my pain managment doctor says she thinks it is poly neuropathy. What/ how much difference and do I have both? Thank you.

Jump to this post

Hi @summertime4
My understanding is that peripheral neuropathy is what all neuropathy is called that is outside of the CNS, the central nervous system (brain + spinal cord). So you can have polyneuropathy (many nerves) or mononeuropathy (a single nerve) but they are both considered peripheral neuropathy if they occur outside of the CNS, like in arms, legs, feet, face, etc. Hope this helps. Hank

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@specialty555

I have poly neuropathy but now they are trying to figure out adrenal glands issue. Did they give you any ideas on what to do with neuropathy?

Jump to this post

@specialty555
Hi there, my wife has had PN in her feet/ankles for 6 years. She does not do well with drugs and hates the thought of taking them in any case. Like you, she got no help from gabapentin and quit it. You ask for ideas. Here is the regime she follows:

1. healthy low sugar diet
2. 28 different supplements, best quality ones she can find; the ones specifically for PN include include benfotiamine, r lipoic acid coupled with acetyl l carnitine, Theracurmin (curcumin product recommended by @jeba ) for inflammation, and PEA (PALMITOYLETHANOLAMIDE).
3. she uses Penetrex (roll on, not the cream) on her feet before going to bed as it calms the pain down by about 30% for long enough to get to sleep. Before applying the Penetrex she soaks her feet in water, as hot as she can tolerate, which seems to help.
4. She has an electric fan blowing on her feet both during the day when she is sitting and at night while sleeping (she sticks her feet out at the end of the bed).
5. she keeps her stress level WAY down at all times and does not leave home most days. She tries to get regular sleep and enough sleep
6. She uses cannabis and kratom when her pain level goes beyond her ability to tolerate it.

Using these methods, she is, so far, managing to cope with her pain. The one thing that is lacking in her lifestyle is enough exercise. She says she is too weak most of the time, as she gets really hammered with the severity of the pain. Hope you find some or any of this helpful. Best, Hank

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