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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.

Mentor
Rachel, Volunteer Mentor | @rwinney | Feb 23, 2020
In reply to @lois6524 "I have used the Zopec device that John is referring to for quite a few years..." + (show)
@lois6524

I have used the Zopec device that John is referring to for quite a few years -- it is an electrical stimulus device -- I use it about a half hour every morning, sometimes a bit longer -- I don't have the pain just the numbness and stiffness in my feet/ankles/lower legs. What I feel it does for me is that it stimulates the blood vessels, and then I don't feel the stiffness as much. I didn't think it was helping, but then when we went on vacation, I didn't take it with me, and then I knew it was helping me

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Hi - do you or someone else mind posting a photo of this device? There's an ad in my sunday paper promoting a seminar on a device for neuropathy. I always ignore, thinking it's a hoax or a farce.
Thank you
Rachel

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2 replies
Mentor
Rachel, Volunteer Mentor | @rwinney | Feb 23, 2020
In reply to @rwinney "Hi - do you or someone else mind posting a photo of this device? There's an..." + (show)
@rwinney

Hi - do you or someone else mind posting a photo of this device? There's an ad in my sunday paper promoting a seminar on a device for neuropathy. I always ignore, thinking it's a hoax or a farce.
Thank you
Rachel

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Also, at a point where hydrocodone, Lyrica or anything else is no longer helping my pain, cramping or weakness. Medical marijuana only at night bc the high strength I need leaves me non functioning during day. Not that I function any way. Go figure!

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2 replies
wilcy | @wilcy | Feb 23, 2020
In reply to @rwinney "Also, at a point where hydrocodone, Lyrica or anything else is no longer helping my pain,..." + (show)
@rwinney

Also, at a point where hydrocodone, Lyrica or anything else is no longer helping my pain, cramping or weakness. Medical marijuana only at night bc the high strength I need leaves me non functioning during day. Not that I function any way. Go figure!

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Same here

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lois6524 | @lois6524 | Feb 23, 2020

go to Zopec medical foot neuropathy treatment system -- asyou will note, it does not cure pain,, but does advocate a number of other conditions

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Jane | @darlingtondoll | Feb 23, 2020
In reply to @rwinney "Also, at a point where hydrocodone, Lyrica or anything else is no longer helping my pain,..." + (show)
@rwinney

Also, at a point where hydrocodone, Lyrica or anything else is no longer helping my pain, cramping or weakness. Medical marijuana only at night bc the high strength I need leaves me non functioning during day. Not that I function any way. Go figure!

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I only take my medical marijuana THC at night because it puts me to sleep (thankfully so). I only sleep for about four hours before waking up in pain again, so I take some more and sleep until four AM.

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ruthofanne | @ruthofanne | Feb 23, 2020

has anyone gone to the Loma Linda Neuropathy Center in Loma Linda. I checked out their website and it looks encouraging, but would have to travel there.

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Mentor
John, Volunteer Mentor | @johnbishop | Feb 23, 2020
In reply to @rwinney "Hi - do you or someone else mind posting a photo of this device? There's an..." + (show)
@rwinney

Hi - do you or someone else mind posting a photo of this device? There's an ad in my sunday paper promoting a seminar on a device for neuropathy. I always ignore, thinking it's a hoax or a farce.
Thank you
Rachel

Jump to this post

@rwinney -- here's what it looks like. Don't be laughing at those gorgeous hammer toes ☺ You can buy different size pads. I used alcohol wipes to clean it. You can program the unit for several different types of treatments. It comes with an instruction booklet. Here's a YouTube video explanation on how to use it.
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1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Feb 23, 2020
In reply to @johnbishop "@rwinney -- here's what it looks like. Don't be laughing at those gorgeous hammer toes ☺..." + (show)
@johnbishop

@rwinney -- here's what it looks like. Don't be laughing at those gorgeous hammer toes ☺ You can buy different size pads. I used alcohol wipes to clean it. You can program the unit for several different types of treatments. It comes with an instruction booklet. Here's a YouTube video explanation on how to use it.

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Ohhhh, I see, just for feet..the machine is.

Hey -we've all got some feet pics. No worries. Check these babies out!! Haha...stomping grapes neuropathy foot.
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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Feb 23, 2020
In reply to @rwinney "Ohhhh, I see, just for feet..the machine is. Hey -we've all got some feet pics. No..." + (show)
@rwinney

Ohhhh, I see, just for feet..the machine is.

Hey -we've all got some feet pics. No worries. Check these babies out!! Haha...stomping grapes neuropathy foot.

Jump to this post

@rwinney I think Zopec has pads for hands too.
Actually I did use mine on my hands a few times to see how it felt.

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paulv | @paulv | Feb 23, 2020

John The Anodyne treatment that I am looking into involves a boot that can be worn on either foot,and goes up over the lower leg just beneath the knee. You then are subjected to Monochromatic Infraed Photo Thermal Energy light beams which according to the PT will provide some relief to the numbness, pain and sensation in the feet and lower legs. You are supposed to wear the boot for 30 minutes each day for 30 to 60 days. I have copies of the 2 articles that you initially referenced and I agree that they are not extremely positive in treating PN using the Anodyne approach. What I find interesting is that the Doctor of Physical Therapy gave me articles that reflect studies on people with PN who claim a high degree of relief with this approach. I could not find these articles in my literature search. That is why I ask if anybody from" Living With Neuropathy" had tried this treatment to provide some relief. Paul V

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