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Moderator

Living with Neuropathy - Welcome to the group

Posted by Colleen Young, Connect Director @colleenyoung, Jul 14, 2017

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?

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

bilbo91412 | @bilbo91412 | Jun 4, 2023

I'm interested in finding out what others are doing for this issue. And what they found that works to releave pain

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2 replies
paktoledo | @paktoledo | Jun 4, 2023
In reply to @jeanm1 "--Apple-Mail-8D14CAE9-F1D1-4B5C-8633-88C29251A809 Content-Type: text/html; charset=utf-8 Content-Transfer-Encoding: quoted-printable Sounds like a good plan but is often diffic= ult..." + (show)
@jeanm1

--Apple-Mail-8D14CAE9-F1D1-4B5C-8633-88C29251A809
Content-Type: text/html;
charset=utf-8
Content-Transfer-Encoding: quoted-printable

Sounds like a good plan but is often diffic=
ult since I live in a winter climate.  Getting out for a walk can be co=
ld and hazardous under foot!  So I have taken to stair walking, which i=
s also boring!Sent from my iPhoneOn Jun 4, 2023, at 5:42 PM, Mayo Clinic C=
onnect <

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I also live in a cold state. Minnesota!
Sounds like you are doing the best you can! Keep up the good work.
P
M me if you ever wanted/need to talk! God Bless You! Pat

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lorrainehackett | @lorrainehackett | Jun 4, 2023
In reply to @bilbo91412 "I'm interested in finding out what others are doing for this issue. And what they found..." + (show)
@bilbo91412

I'm interested in finding out what others are doing for this issue. And what they found that works to releave pain

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Hi

I take 60 mg of Duloxetine daily and 300 mg of Gabapentin 3 times a day. I find it really helps my pain from peripheral Neuropathy.

Good luck.

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john riedl | @johnriedl | Jun 4, 2023

I am taking 100mg of prgababalin twice daily.

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cher27 | @cher27 | Jun 5, 2023
In reply to @janetlee23 "Hi. My name is Jan and I have peripheral neuropathy in my feet. It seems to..." + (show)
@janetlee23

Hi. My name is Jan and I have peripheral neuropathy in my feet. It seems to have been getting worse until just recently when my doctor ordered some blood tests and I found out that I am very high in vitamin B6. I have been taking B6 off and on for a few years but a week ago I stopped. It seems like my neuropathy is slightly better but I'm not sure if it's only in my mind. B6 has been shown to cause naturopathy if you have toxic levels in your blood. Has anyone else had any experience with this being true? Also, some people have neuropathy symptoms just from taking any B6 supplement. Not to worry about B6 you get naturally in foods.

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SAME! When my neurologist saw my labs, he was shocked at the high level of B6 & told me to stop taking B supplements, except for B12. I did. Unfortunately, the damage was probably already done.

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Mentor
John, Volunteer Mentor | @johnbishop | Jun 5, 2023
In reply to @bilbo91412 "I'm interested in finding out what others are doing for this issue. And what they found..." + (show)
@bilbo91412

I'm interested in finding out what others are doing for this issue. And what they found that works to releave pain

Jump to this post

Hello @bilbo91412, Welcome to Connect. Here are a few other discussions where you can read what others have shared helps:

--- Small Fiber Neuropathy: What helps?: https://connect.mayoclinic.org/discussion/small-fiber-neuropathy/
--- Neuropathy - What physical activities help?: https://connect.mayoclinic.org/discussion/neuropathy-22/
--- Neuropathy Pain at Night: What helps?: https://connect.mayoclinic.org/discussion/night-pain-2/
--- What helps the symptoms of Small Fiber Neuropathy?: https://connect.mayoclinic.org/discussion/tingling-from-small-fiber-neurapathy/.

Can you share a little more about your neuropathy diagnosis and any treatments you've tried?

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kimegraves | @kimegraves | Jun 5, 2023
In reply to @imagine1 "Hi, I'm Dawn. Diagnosed (after several doctor visits and tests) with peripheral polyneuropathy, which has become..." + (show)
@imagine1

Hi, I'm Dawn. Diagnosed (after several doctor visits and tests) with peripheral polyneuropathy, which has become much worse over the last year. Have a lot of balance issues and fall fairly frequently. Try to get exercise by going up and down shopping aisles (because I can hang on to the cart and pretend I'm walking somewhat normally), but if I do too much of that, I'm awake all night because of unrelenting pain in my legs. Does anyone else experience that? On Gabapentin, but not sure how much it helps. So glad to find this forum for support and information. What a frustrating diagnosis! The neurologist essentially said, don't know why you have it but that doesn't make much difference - there's not a lot you can do about it.

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@imagine1
Hello Dawn,
I read your post and first I want to say I am sorry you have neuropathy, it can very very painful at times and challenging to life. You asked if anyone had experience with gabapentin, I have CIDP and that also comes with a great deal of pain and I have been taking gabapentin for about two years now. I have to say in the beginning it didn’t seem to help much but I have had my dosage increased a few times and now the pain has substantially decreased. One important thing that I have learned is to take the medication routinely as close to eight hours apart as possible.
If I get busy and don’t take the medication on time the pain gets severe and it is difficult to get back under control. I also feel that it took several months
for the pain to subside. I find that being active, attempting to decrease my sugar intake and getting my IGG infusion as scheduled also makes life better. I do hope you fell better in the future. Keep us posted.
Kim

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1 reply
DawnG | @imagine1 | Jun 5, 2023
In reply to @kimegraves "@imagine1 Hello Dawn, I read your post and first I want to say I am sorry..." + (show)
@kimegraves

@imagine1
Hello Dawn,
I read your post and first I want to say I am sorry you have neuropathy, it can very very painful at times and challenging to life. You asked if anyone had experience with gabapentin, I have CIDP and that also comes with a great deal of pain and I have been taking gabapentin for about two years now. I have to say in the beginning it didn’t seem to help much but I have had my dosage increased a few times and now the pain has substantially decreased. One important thing that I have learned is to take the medication routinely as close to eight hours apart as possible.
If I get busy and don’t take the medication on time the pain gets severe and it is difficult to get back under control. I also feel that it took several months
for the pain to subside. I find that being active, attempting to decrease my sugar intake and getting my IGG infusion as scheduled also makes life better. I do hope you fell better in the future. Keep us posted.
Kim

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Thank you, Kim. That is really helpful to know. I'll make sure I'm taking Gabapentin routinely and I'll be patient with the time it might take for it to work. Only started taking it recently.

I'm also going to make a point of being more active on a regular basis. I've shied away from exercise because of the pain it causes and a fear of falling, but I've seen a number of posts about it being beneficial with neuropathy, so am thinking I just have to keep doing it.

Greatly appreciate your response.
Dawn

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bkfoster1 | @bkfoster1 | Jun 5, 2023

Hi. I'm Barb, and I posted a comment yesterday, with no answering reply: I have burning and percolating legs on the shins at night, and my legs hurt during the day, especially if I stand more than 5 minutes in one place. Has anyone had these symptoms? Does this ever end?

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1 reply
lorrainehackett | @lorrainehackett | Jun 5, 2023
In reply to @bkfoster1 "Hi. I'm Barb, and I posted a comment yesterday, with no answering reply: I have burning..." + (show)
@bkfoster1

Hi. I'm Barb, and I posted a comment yesterday, with no answering reply: I have burning and percolating legs on the shins at night, and my legs hurt during the day, especially if I stand more than 5 minutes in one place. Has anyone had these symptoms? Does this ever end?

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Hi Barb

I had burning shins snd feet. I was put on Duluxetine 60 mg a date. The later added 300 mg Gabapentin three times a day. Really helped me.

So sorry you have not found relief yet.

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