1. < Neuropathy
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.

steeldove | @steeldove | Feb 21, 2020
In reply to @johnhans "@steeldove is there some way to translate this into understandable language? This is way too deep..." + (show)
@johnhans

@steeldove is there some way to translate this into understandable language? This is way too deep for me.

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@johnhans Perhaps your neurologist can explain to you how information in the article applies to your case.

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1 reply
johnhans | @johnhans | Feb 21, 2020
In reply to @steeldove "@johnhans Perhaps your neurologist can explain to you how information in the article applies to your..." + (show)
@steeldove

@johnhans Perhaps your neurologist can explain to you how information in the article applies to your case.

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@steeldove I need to change my neurologist since I changed insurance so I will see what the new one says this summer when I have my yearly checkup for neuropathy.

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Mentor
Jim, Volunteer Mentor | @jimhd | Feb 21, 2020
In reply to @gramm "I’ve not been tested for neuropathy but have been tested for carpal tunnel. I do have..." + (show)
@gramm

I’ve not been tested for neuropathy but have been tested for carpal tunnel. I do have severe carpal that I refuse surgery for because I’m handicapped and non-ambulatory, so use my hands and arms to move from wheelchair to toilet, etc. My doctor has checked and says I have neuropathy though too.

I get the numbness during the daytime but seldom the pain. I’ve had to give up my knitting and crochet work because of it. I also drop things a lot.

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@gramm My wife has had surgery on both of her wrists. She had been able only to knit for a few minutes until she hurt too much. After surgery, with a really quick recovery, she could knit all day without pain. I echo what @johnhans says about getting assistance for the few days of recovery.
Jim

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gramm | @gramm | Feb 22, 2020
In reply to @wilcy "I tried the shots 2 different times! Didn’t work" + (show)
@wilcy

I tried the shots 2 different times! Didn’t work

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Thank you for sharing your experience.

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gramm | @gramm | Feb 22, 2020
In reply to @fredjan2016 "I have peripheral neuropathy in my feet and hands. I have to keep my feet and..." + (show)
@fredjan2016

I have peripheral neuropathy in my feet and hands. I have to keep my feet and hands out from under the covers or I wake up in pain. Once I remove them from under the covers and they cool off I can go back to sleep.

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I have to try to keep my hands straight down by my sides. Sometimes that works.

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paulv | @paulv | Feb 22, 2020

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

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Feb 22, 2020
In reply to @paulv "I am Paul and 73 years old. I have had peripheral neuropathy in my hands and..." + (show)
@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

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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

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2 replies
paulv | @paulv | Feb 22, 2020
In reply to @johnbishop "Hello @paulv, welcome to Connect. I've tried a Zopec DT1200 tens unit and didn't get much..." + (show)
@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

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

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Leonard | @jakedduck1 | Feb 22, 2020

@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

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1 reply
paulv | @paulv | Feb 22, 2020
In reply to @jakedduck1 "@paulv Personally I would save my money. i’m skeptical of this device and one reason is..." + (show)
@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

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