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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.

margaretob | @margaretob | Jan 28, 2020
In reply to @maryv449 "Have you tried cold laser therapy? i have been using it and it has made a..." + (show)
@maryv449

Have you tried cold laser therapy? i have been using it and it has made a world of difference, I can even sleep all night through without waking up with the burning pain. I bought mine at Amazon for $129. and I am so glad that i did. 2 of my friends bought one too and they are experiencing great results too. My brother in law uses it for his shoulder and getting relief too. The good thing is with Amazon is you can return it if you don't like it. Good luck with whatever you choose. Neurapathy is a miserable thing to have.

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What is COLD LASER THERAPY? I will try it to take the pain away, ANYTHING RIGHT NOW. Took two ADVIL and my GABAPENTIN 300 mgs. and my insulin and am stretching. NOTHING is doing anything right now. 11 P.M. attack still lasting at 11 20. I AM NOT GOING TO THAT EMERGENCY ROOM AGAIN...M.

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Leonard | @jakedduck1 | Jan 28, 2020
In reply to @margaretob "No appointment, Doctor does not take my insurance. Back to the CLINIC tomorrow if I can..." + (show)
@margaretob

No appointment, Doctor does not take my insurance. Back to the CLINIC tomorrow if I can move my legs. I hate going to the emergency room for this pain. I am stretching and trying to walk, the GABAPENTIN 300 mg is not helping yet. How long does it take to kick in? M.

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@margaretob
Hello,
It should become affective within one or two weeks.
My brother takes 2,700mg and it helps him. I took 3,600mg which is the maximum recommend dose and it didn’t help my neuropathy or my seizures.
Fingers crossed that it works for you,
Jake

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mstrasse1 | @mstrasse1 | Jan 28, 2020
In reply to @margaretob "What is COLD LASER THERAPY? I will try it to take the pain away, ANYTHING RIGHT..." + (show)
@margaretob

What is COLD LASER THERAPY? I will try it to take the pain away, ANYTHING RIGHT NOW. Took two ADVIL and my GABAPENTIN 300 mgs. and my insulin and am stretching. NOTHING is doing anything right now. 11 P.M. attack still lasting at 11 20. I AM NOT GOING TO THAT EMERGENCY ROOM AGAIN...M.

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Cold Laser is hand held laser machine that pulses into the skin and below. I use it on about four places on my upper lower leg and foot. It has reduced swelling and eliminated the pain. I do 30 minutes in the morning and 30 minutes at night. Hope it will work for you. Bought mine at Amazon for $129 - there are others that may do better.

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Jane | @darlingtondoll | Jan 29, 2020

I take 600 mg of Gabapentin every six hours, 6 AM, noon, 6 PM and at midnight. It helps a lot. Maybe you need to increase your dosage.

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swartzki | @swartzki | Jan 29, 2020
In reply to @johnbishop "@swartzki, I'm really sorry to hear that your husband is not supportive. That's on him and..." + (show)
@johnbishop

@swartzki, I'm really sorry to hear that your husband is not supportive. That's on him and not you. The fact that you are here looking for answers and learning as much as you can about your small fiber neuropathy condition is a good thing. The more you can learn, the better chance you have of finding a treatment or therapy that works for you. Although small fiber neuropathy (SFN) is serious, it is not (IMHO) the end of the world. Hoping you are able to take it one day at a time, one step at a time, learning as much as you can and find something that will help your symptoms.

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Thank you. Just hearing you say it's not the end of the world gives me hope that I can live again. It is amazing how the right words can mean so much.

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Mentor
Rachel, Volunteer Mentor | @rwinney | Jan 29, 2020
In reply to @swartzki "Thank you. Just hearing you say it's not the end of the world gives me hope..." + (show)
@swartzki

Thank you. Just hearing you say it's not the end of the world gives me hope that I can live again. It is amazing how the right words can mean so much.

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Couldn't agree more with you. The power of words. My husband is not big on words so I'm thankful to get them here.

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lorirenee1 | @lorirenee1 | Jan 29, 2020
In reply to @jimhd "@lorirenee1 Interesting. The psychiatrist approved me for the stimulator, knowing that I've been clinically depressed since..." + (show)
@jimhd

@lorirenee1 Interesting. The psychiatrist approved me for the stimulator, knowing that I've been clinically depressed since 2002.

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@jimhd Sometimes I think they are all in Kahoots with one another, to try and sell the product. But that is just my miserable skepticism. Or, on a happier note, just a good guy, who knew you needed it badly! Lori Renee

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straightway22 | @straightway22 | Jan 30, 2020
In reply to @johnbishop "Thank you Colleen and Mayo Connect! @jimhd @bburleson1 @swiss @hollander @fonda @gratefulone @mikween @aliskahan @grandma41 @rabbit10..." + (show)
@johnbishop

Thank you Colleen and Mayo Connect!

@jimhd @bburleson1 @swiss @hollander @fonda @gratefulone @mikween @aliskahan @grandma41 @rabbit10 @ujeeniack @gailfaith @ridgerunner @joannem @medic7054 @fleure @beckypain66 @philio66 @peggyj4411 @16jody @twinky @martid @grandma41 @pinkmk @crystalgal @gman007 @mari @amkaloha @bobsconnect @salena54 @robertlclark @upnorthnancy @tonyc55 @painwarrior @ladyjane85 @bobe @dbentley @pgjanes @citylady @mfobrien36 @timmckinney @briansr @superwife – Welcome to our new Neuropathy Group!

Our peripheral neuropathy discussion has grown quite large making it a challenge to find the information. We hope our new Neuropathy Group will make it easier for members to find a relevant discussion to ask their questions and share information. If you don’t find a discussion that meets your need then jump right in and create a new one! Be sure to invite other Connect members to join you. Inviting is easy, just tag a member by using their Connect member name which starts with an “@” sign.

The new Neuropathy Group is your community so let’s help each other by sharing your story, asking questions, and learning while we figure out how to deal with our specific type of neuropathy.

John

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I have peripheral neuropathy and it’s getting worse. In fact I have autonomic peripheral neuropathy. I have no pain. But I can barely walk. I fell today. My balance is terrible. What do you people do. Is there any relief from this

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straightway22 | @straightway22 | Jan 30, 2020
In reply to @straightway22 "I have peripheral neuropathy and it’s getting worse. In fact I have autonomic peripheral neuropathy. I..." + (show)
@straightway22

I have peripheral neuropathy and it’s getting worse. In fact I have autonomic peripheral neuropathy. I have no pain. But I can barely walk. I fell today. My balance is terrible. What do you people do. Is there any relief from this

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It’s me again. I do not have diabetes, in fact my blood sugar is perfect. My neurologist thinks I may have gotten it from taking dilantin for years.

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wilcy | @wilcy | Jan 30, 2020

Same as you but not as bad! About to have stimulator wires placed in back! Pain management thinks it will work! Spinal stenosis! Found something working for my feet neuropathy and pain! Research Curcumin and Red Kratom! It seems to be working! Drove for 2 hours today! Am sure someone will disagree with these two natural plants! You do have to use a lot! They have been used in other countries for hundreds of years! You also don’t want to drink alcohol after using! You would have to let your primary know before using with prescriptions! I don’t take prescriptions! This is not marijuana!

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