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?

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

I have tried a device called the Rebuilder. It is supposed to retrain your nerves to operate normally, instead of sending pain signals. I have tried it off and on for over a year, and I cannot say that it helps. I have terrible burning pain in my feet and hands, and it does feel a little better when I am doing it (only 30 minutes, twice a day, max), but it does not help when it is not on. A physical therapist used it and then I bought one (about $1k). You can google it and find out about it.

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@cwallen9 The Rebuilder looks like a device used externally. A Peripheral Nerve Stimulator device is installed in the body.

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@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 had the burning in my buttock and feet since I had back surgery approx. 7 yrs. ago. I have been to many doctors and clinics to no success. Ice does help and then I take percocet with gabapentin . I always get up each morning and run cold water over my feet or soak them in cold water. That does seem to help too. When this doesn't help I'm am in tears. Very hard to sit.

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Stretch your buttocks cheeks! Go to you tube

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@wilcy

I am 69! The. Spinal stimulator was installed 3 days ago! Did trial run for 3 days before permanent was put in back! Think about 80% reduction in pain! Can atleast go to stores! Two wires run up my spine and battery pack was put in butt cheek! I have had rods put in back, shots,drugs! Think it made it worse! Go to you tube! May work week or 10 years! Just 2 years worth be sweet! Am increasing my walking distance to loose about 50 lbs! Should help with stenosis and neuropathy! They have been around for several years!

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@wilcy was the surgery for the stimulator very difficult or was it easy and straightforward? Will be interested to know more details about how it does after you have had it in a while. Hopefully the pain relief stays with you a long time. Good luck! Hank

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@jesfactsmon

@wilcy was the surgery for the stimulator very difficult or was it easy and straightforward? Will be interested to know more details about how it does after you have had it in a while. Hopefully the pain relief stays with you a long time. Good luck! Hank

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Very simple surgery! Before, would not give me medication! Unreal, my age! Who cares if you get addicted! Anyway, get on you tube! About to take short trip! Couldn’t before

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@wilcy

Very simple surgery! Before, would not give me medication! Unreal, my age! Who cares if you get addicted! Anyway, get on you tube! About to take short trip! Couldn’t before

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@wilcy I'm so happy for your success. Enjoy your trip!!
Rachel

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@cwallen9

I have tried a device called the Rebuilder. It is supposed to retrain your nerves to operate normally, instead of sending pain signals. I have tried it off and on for over a year, and I cannot say that it helps. I have terrible burning pain in my feet and hands, and it does feel a little better when I am doing it (only 30 minutes, twice a day, max), but it does not help when it is not on. A physical therapist used it and then I bought one (about $1k). You can google it and find out about it.

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Hi cwallen9,
Your post is very timely, regarding the ReBuilder device that you purchased to no avail. I was going to purchase one in the next few weeks , but after seeing your post I am reluctant. I had a 1 hour phone consult with a Chiropractor who inadvertently mentioned ReBuilder in discussion as part of his treatment plan along with some RLT device. He claims to have treated hundreds of successful SFN patients from a Walker to Walking condition using this treatment stressing the devices 7.82 mg low power to stimulate the nerves in my numbed foot. What specifically was your treatment, foot bath or dry application ? 2X daily with a 6 hour interval recommended procedure ? The foot bath unit is 800.00 with a 90 day warranty, what are your thoughts ?

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I'm glad it might be of some help to you. I guess that is what this group is all about. I first used it in physical therapy about once or twice per week. I had spoken with a physical therapist who was retired, but he used to work at the facility and he claimed it helped many of his patients. I believed his testimonial since he would not benefit in any way. I did this for a about two months, and then bought a foot bath unit for myself. I did it once per day for about two weeks straight. I did not notice any significant reduction in pain. I still use it once in a while because it feels good when I am using it. Maybe I didn't try it for a long enough period. I also tried the Inspirastar Frequency Specific Microcurrent machine (FSM). It is similar to the ReBuilder, but it is at a much lower current. It supposedly finds a specific frequency to heal your nerves. I tried this for a month (rented it) without any pain relief. It gets pretty discouraging trying all of these "cures" without any good results. I have neuropathy in my feet, legs, hands and arms from a failed cervical steroid shot. I also have collapsed discs in my neck. Maybe it will help with your problem. Good luck!

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@kazz30

Hi cwallen9,
Your post is very timely, regarding the ReBuilder device that you purchased to no avail. I was going to purchase one in the next few weeks , but after seeing your post I am reluctant. I had a 1 hour phone consult with a Chiropractor who inadvertently mentioned ReBuilder in discussion as part of his treatment plan along with some RLT device. He claims to have treated hundreds of successful SFN patients from a Walker to Walking condition using this treatment stressing the devices 7.82 mg low power to stimulate the nerves in my numbed foot. What specifically was your treatment, foot bath or dry application ? 2X daily with a 6 hour interval recommended procedure ? The foot bath unit is 800.00 with a 90 day warranty, what are your thoughts ?

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@cwallen9 @kazz30 I looked online for critiques of ReBuilder, and found one by neurologist Steven Novella who has great credentials, one being that he's a professor at Yale School of Medicine.

If you Google Steven Novella Rebuilder, you'll find his review.

Jim

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