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?

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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John The Anodyne treatment is with a boot and Monochromatic Infrared Photo Thermal Energy Therpy [infrared light]. Much different than Zopec FYI Paul V

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John, I did the anodyne therapy a year ago, but this used pads that could be positioned wherever they wanted. They used 4 pads on each leg, one top of each foot, one on the pad of each foot, and one on each side of both legs. They left them on for 30 minutes each session. I did 16 sessions, which was a 3 hr. round trip from my home. After all was said and done, I could feel relief, but in a year since, that relief has dissipated. Would it be worse had I not done it? I don't know. But I know everyone is different, and I have never tried the boot system. I'm just glad that Medicare paid for it.

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@waltermc

John, I did the anodyne therapy a year ago, but this used pads that could be positioned wherever they wanted. They used 4 pads on each leg, one top of each foot, one on the pad of each foot, and one on each side of both legs. They left them on for 30 minutes each session. I did 16 sessions, which was a 3 hr. round trip from my home. After all was said and done, I could feel relief, but in a year since, that relief has dissipated. Would it be worse had I not done it? I don't know. But I know everyone is different, and I have never tried the boot system. I'm just glad that Medicare paid for it.

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Thanks for sharing @waltermc – I didn’t think Medicare would pay for it. Where did you have the Anodyne treatment?

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I'm guessing a lot of us already know this but it is good information if you want to share it with friends and relatives who may not understand.

Mayo Clinic Minute: What may be causing your hands and feet to tingle – https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-minute-what-may-be-causing-your-hands-and-feet-to-tingle/

Hoping that all my friends with PN have a pain free day.

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I have autonomic peripheral neuropathy, my feet and legs are numb. Having trouble with balance. Has anyone found any relief.

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Going Wednesday to pain management to have stimulator placed inside back, bad neuropathy, can’t go anywhere

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@wilcy

Going Wednesday to pain management to have stimulator placed inside back, bad neuropathy, can’t go anywhere

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@wilcy Im happy to hear you have a hopeful plan. Will this be your first stimulator? Where is your pain located that the stimulator will be helping?
Rachel

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I am 68. Have lumbar spinal stenosis! Can’t walk over 100 feet with out sitting! When I stand it’s putting pressure on nerve in spinal column! Bad neuropathy coming up legs! Have had surgery, shots, pills, decompression, My surgeon said go to neurologist, went to 2 and nothing! My pain management doctor thinks the stimulation wires put into my back next to spine will help! Been around for 50 years! Insurance doesn’t like it.Very pricey! Anyway, to take 30 minutes to install wires! Will post results!

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@wilcy

I am 68. Have lumbar spinal stenosis! Can’t walk over 100 feet with out sitting! When I stand it’s putting pressure on nerve in spinal column! Bad neuropathy coming up legs! Have had surgery, shots, pills, decompression, My surgeon said go to neurologist, went to 2 and nothing! My pain management doctor thinks the stimulation wires put into my back next to spine will help! Been around for 50 years! Insurance doesn’t like it.Very pricey! Anyway, to take 30 minutes to install wires! Will post results!

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@wilcy hope it relieves your pain and you can update us when the device is installed.

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Tks, this is last chance! Will post probably Thursday

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@straightway22

I have autonomic peripheral neuropathy, my feet and legs are numb. Having trouble with balance. Has anyone found any relief.

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@straightway22

I've had small fiber idiopathic polyneuropathy for a number of years, and last year was told I have the beginning of autonomic neuropathy. It could be at least partially responsible for several things going on with me – double vision, sudden random loss of knee muscle, urinary issues, ED, not picking up my feet enough… I may be asking the same question as you, one of these days. It's just impossible to know the future with neuropathy

Jim

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@straightway22

I have autonomic peripheral neuropathy, my feet and legs are numb. Having trouble with balance. Has anyone found any relief.

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I use a device at the fitness center where I work out called a Sanddunestepper. You stand and walk on it (holding onto something if you need to). It mimics lwalking on sand so it challenges your feet and legs and helps my balance. But my feet burn instead of are numb so I don’t know if it will help you or not. You can see it in line at Sanddunestepper.com and buy one. They cost around $250 plus shipping from CA where they are made.

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@catro

I use a device at the fitness center where I work out called a Sanddunestepper. You stand and walk on it (holding onto something if you need to). It mimics lwalking on sand so it challenges your feet and legs and helps my balance. But my feet burn instead of are numb so I don’t know if it will help you or not. You can see it in line at Sanddunestepper.com and buy one. They cost around $250 plus shipping from CA where they are made.

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@catro the Sand Dune Stepper – https://www.sanddunestepper.com/ certainly looks like it would be helpful to me. I watched a few YouTube video reviews and was pretty impressed. I think it would really help with balance and leg strength. Thanks for sharing!

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Diabetes Type II and peripheral neuropathy often go together. For those of you who have both of these disorders, I thought you might find this Mayo Clinical Trial interesting. Please click on the link to read more about it.
https://connect.mayoclinic.org/page/adult-pain-medicine/newsfeed-post/study-opportunity-seeking-volunteers-with-type-2-diabetes-and-painful-peripheral-neuropathy/?utm_campaign=hub_email&utm_source=email&utm_medium=digest_card_title_link

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