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?

I am Paul and 73 years old. I have had peripheral neuropathy in my hands and feet for 17 years and started taking gabepentin, 300mg, 3 times a day about 5 years ago. I have been to 8 neurologists and several chiopractors over the years for help. I have ruled out stem cell treatment but am now looking at Anodyne treatment for my feet as I am losing more sensation in my feet and lower legs. I can still walk and drive and go to the gym 3 times a week to stretch and do light weight work, plus 25 to 30 minutes on the elipitical machine. I cant find much supportive info on the Anodyne light treatment and the boot form the process cost $1200. Has anbody tried this treatment? If so please let me know if its proven effective? Thank you

Liked by Dee, Leonard

REPLY
@paulv

I am Paul and 73 years old. I have had peripheral neuropathy in my hands and feet for 17 years and started taking gabepentin, 300mg, 3 times a day about 5 years ago. I have been to 8 neurologists and several chiopractors over the years for help. I have ruled out stem cell treatment but am now looking at Anodyne treatment for my feet as I am losing more sensation in my feet and lower legs. I can still walk and drive and go to the gym 3 times a week to stretch and do light weight work, plus 25 to 30 minutes on the elipitical machine. I cant find much supportive info on the Anodyne light treatment and the boot form the process cost $1200. Has anbody tried this treatment? If so please let me know if its proven effective? Thank you

Jump to this post

Hello @paulv, welcome to Connect. I've tried a Zopec DT1200 tens unit and didn't get much relief but I only have the numbness.
@goetf4997 @bruce2666 @patrick17 @pdsi43one @dbentley have discussed Anodyne treatment in other posts and may have some suggestions or information for you.

While we wait to hear back from other members, you may be interested in the following information from a previous post in this discussion.

Does Anodyne Light Therapy Improve Peripheral Neuropathy in Diabetes?
http://care.diabetesjournals.org/content/31/2/316

Effectiveness of the anodyne therapy system in treating diabetic peripheral neuropathy: a systematic review
https://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0026052/

I looked into a similar treatment from Realief Neuropathy Treatment Center but decided against it based on conversations I had with the treatment center on possible outcomes vs cost vs number of treatments required before they said I would see results…if any. On the other hand I know of a lady older than myself (and I'm old ☺) to whom money was not a problem and she had many treatments and felt it helped her. I'm just not sold on it.

Hopefully some others will join in the conversation and provide you with more information on the anodyne therapy.

John

Liked by Dee, Leonard

REPLY
@johnbishop

Hello @paulv, welcome to Connect. I've tried a Zopec DT1200 tens unit and didn't get much relief but I only have the numbness.
@goetf4997 @bruce2666 @patrick17 @pdsi43one @dbentley have discussed Anodyne treatment in other posts and may have some suggestions or information for you.

While we wait to hear back from other members, you may be interested in the following information from a previous post in this discussion.

Does Anodyne Light Therapy Improve Peripheral Neuropathy in Diabetes?
http://care.diabetesjournals.org/content/31/2/316

Effectiveness of the anodyne therapy system in treating diabetic peripheral neuropathy: a systematic review
https://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0026052/

I looked into a similar treatment from Realief Neuropathy Treatment Center but decided against it based on conversations I had with the treatment center on possible outcomes vs cost vs number of treatments required before they said I would see results…if any. On the other hand I know of a lady older than myself (and I'm old ☺) to whom money was not a problem and she had many treatments and felt it helped her. I'm just not sold on it.

Hopefully some others will join in the conversation and provide you with more information on the anodyne therapy.

John

Jump to this post

John FYI, I am not diabetic and my neuropathy is idopathic. Just another data point. Paul V

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@paulv
Personally I would save my money. i’m skeptical of this device and one reason is because of the few studies I read they don’t explain the biological effects of what this light does and how it does it. The studies I looked at are all associated with physical therapy in addition to the light therapy. although I’m not saying they don’t exist I haven’t seen a study that just uses the light therapy itself. It’s been well proven what the effects of exercise are. The studies I read do not divulge where the funding came from for the study but even if it did it's hard to know who was behind the study. Speaking for myself I know how much better I felt when I was swimming 5 miles a day. Who’s to say whether it was the endorphins that were produced during exercising or a placebo effect.
my neuropathy has significantly improved over the last 30 or so years and I have since made significant lifestyle changes which I believe can only help.
If you go with this therapy I wish you success and hope you will keep us updated on your progress Take care,
Jake

REPLY
@jakedduck1

@paulv
Personally I would save my money. i’m skeptical of this device and one reason is because of the few studies I read they don’t explain the biological effects of what this light does and how it does it. The studies I looked at are all associated with physical therapy in addition to the light therapy. although I’m not saying they don’t exist I haven’t seen a study that just uses the light therapy itself. It’s been well proven what the effects of exercise are. The studies I read do not divulge where the funding came from for the study but even if it did it's hard to know who was behind the study. Speaking for myself I know how much better I felt when I was swimming 5 miles a day. Who’s to say whether it was the endorphins that were produced during exercising or a placebo effect.
my neuropathy has significantly improved over the last 30 or so years and I have since made significant lifestyle changes which I believe can only help.
If you go with this therapy I wish you success and hope you will keep us updated on your progress Take care,
Jake

Jump to this post

You are correct in that the Anodyne treatment was in conjunction with physical therapy. Since I work out quite a bit I opted not to take the PT but wanted to find out whether the Physical Therapist had any empirical data as to the effectiveness of the anodyne treatment. I had done my due diligence and could not find any articles that indicated Anodyne could help my situation only the info from the PT who was advertising and marketing the treatment. So I decided to ask the Mayo Clinic "Living With Neuropathy" for some help. You get to a point wirh PN that youre are willing to try almost anything for some degree of physical relief. Thank you Paul V

REPLY
@johnbishop

Hello @paulv, welcome to Connect. I've tried a Zopec DT1200 tens unit and didn't get much relief but I only have the numbness.
@goetf4997 @bruce2666 @patrick17 @pdsi43one @dbentley have discussed Anodyne treatment in other posts and may have some suggestions or information for you.

While we wait to hear back from other members, you may be interested in the following information from a previous post in this discussion.

Does Anodyne Light Therapy Improve Peripheral Neuropathy in Diabetes?
http://care.diabetesjournals.org/content/31/2/316

Effectiveness of the anodyne therapy system in treating diabetic peripheral neuropathy: a systematic review
https://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0026052/

I looked into a similar treatment from Realief Neuropathy Treatment Center but decided against it based on conversations I had with the treatment center on possible outcomes vs cost vs number of treatments required before they said I would see results…if any. On the other hand I know of a lady older than myself (and I'm old ☺) to whom money was not a problem and she had many treatments and felt it helped her. I'm just not sold on it.

Hopefully some others will join in the conversation and provide you with more information on the anodyne therapy.

John

Jump to this post

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

REPLY
@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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@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

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!

Liked by Dee, Jane

REPLY
@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!

Jump to this post

Same here

Liked by Dee

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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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@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!

Jump to this post

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.

Liked by Dee

REPLY

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.

Liked by Dee

REPLY
@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.

IMG_1209

Liked by Dee

REPLY
@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.

Jump to this post

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.

part0

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@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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