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.

Friday someone wrote about a national forum that has studies on the many treatments for Neuropathy. I was a 5 page study covering groups of Studies. t broke down Medicines from Pills, Creams, Docter studies, home remedies. There were no conclusions. I misplaced the name of the Foundation. Any chance anyone their name or study, Thank You.
GBA

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@gba

Friday someone wrote about a national forum that has studies on the many treatments for Neuropathy. I was a 5 page study covering groups of Studies. t broke down Medicines from Pills, Creams, Docter studies, home remedies. There were no conclusions. I misplaced the name of the Foundation. Any chance anyone their name or study, Thank You.
GBA

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@gba, I think you are referring to the Foundation for Peripheral Neuropathy (https://www.foundationforpn.org/) but I don't think it's a study. It's list they compiled based on input from members of the foundation who have neuropathy. Here's the document: https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf

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Just started having a burning in my feet and ankles. Once in a while I feel a sudden pinch in feet. What are others doing to help with mild pain. Thank you

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@rhonda1830

Just started having a burning in my feet and ankles. Once in a while I feel a sudden pinch in feet. What are others doing to help with mild pain. Thank you

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Welcome @rhonda1830, I don't have the burning feet with my neuropathy but do have the numbness and haven't found much that gets rid of it. There is another discussion you might find some answers in while we wait for others to share their experience.

--- Burning feet and legs: https://connect.mayoclinic.org/discussion/burning-feet-and-legs/.

Here are some home remedies that might provide some relief:
--- 9 home remedies for burning feet: https://www.medicalnewstoday.com/articles/home-remedies-for-burning-feet.

Have you seen a doctor for your symptoms?

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@johnbishop

@gba, I think you are referring to the Foundation for Peripheral Neuropathy (https://www.foundationforpn.org/) but I don't think it's a study. It's list they compiled based on input from members of the foundation who have neuropathy. Here's the document: https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf

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Thank You, John
Yes, that is exactly what I wanted. Great reference to look up all that been tried.
Regards, GBA

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Hi, I'm Bob. I have foot neuropathy, sometimes right and sometimes left, never both at the same time. It occurs mostly at night and wakes me up. I have applied the creams and they work but not as fast and greasy-free as ice-hot roll on that works well and faster. I also notice it when I sit for an extended period of time when working on the computer, but this is daytime and a hint to get up and move around and it stops, if I can't move in a meeting, I sign the alphabet with my foot and it subsides. I can't do this at night because by the time I awake it is game on burning. I have the electrical stimulation test and there was no problem. This started after my second chemo treatment and auto-transplant in 2008, 2006 chemo treatment lasted a year, and the non-Hodkins lymphoma came back. I think it could be related to my blood sugar (intake) in the evening but holding off on sugar does not seem to make a difference. Yes, cancer doc said I make have this as a treatment after effect. Oddly after a week of night attacks it stops for a week or so then starts up again. I am on metformin for pre-diabetes, so I minimize my sugar and carbs intake significantly. I also wear diabetic socks to enhance circulation. I am now purchasing a Cloud Massage Shiatsu Foot Massager Machine. Is there anything else I am not considering doing or check on?

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@revbobcoulson

Hi, I'm Bob. I have foot neuropathy, sometimes right and sometimes left, never both at the same time. It occurs mostly at night and wakes me up. I have applied the creams and they work but not as fast and greasy-free as ice-hot roll on that works well and faster. I also notice it when I sit for an extended period of time when working on the computer, but this is daytime and a hint to get up and move around and it stops, if I can't move in a meeting, I sign the alphabet with my foot and it subsides. I can't do this at night because by the time I awake it is game on burning. I have the electrical stimulation test and there was no problem. This started after my second chemo treatment and auto-transplant in 2008, 2006 chemo treatment lasted a year, and the non-Hodkins lymphoma came back. I think it could be related to my blood sugar (intake) in the evening but holding off on sugar does not seem to make a difference. Yes, cancer doc said I make have this as a treatment after effect. Oddly after a week of night attacks it stops for a week or so then starts up again. I am on metformin for pre-diabetes, so I minimize my sugar and carbs intake significantly. I also wear diabetic socks to enhance circulation. I am now purchasing a Cloud Massage Shiatsu Foot Massager Machine. Is there anything else I am not considering doing or check on?

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Hi Bob @revbobcoulson, Welcome to Connect. I also have neuropathy in my feet and legs but I don't have any pain, just some numbness. I'm not sure if you've seen the Foundation for Peripheral Neuropathy but they have some good information on different possible complementary and alternative treatments here - https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf.

You might also be interested in the following webinar by the Foundation for Peripheral Neuropathy.
--- Webinar: Chemo-Induced Peripheral Neuropathy: https://www.foundationforpn.org/webinar-chemo-induced-peripheral-neuropathy/.

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@johnbishop

Hi Bob @revbobcoulson, Welcome to Connect. I also have neuropathy in my feet and legs but I don't have any pain, just some numbness. I'm not sure if you've seen the Foundation for Peripheral Neuropathy but they have some good information on different possible complementary and alternative treatments here - https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf.

You might also be interested in the following webinar by the Foundation for Peripheral Neuropathy.
--- Webinar: Chemo-Induced Peripheral Neuropathy: https://www.foundationforpn.org/webinar-chemo-induced-peripheral-neuropathy/.

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John, I have not seen these and will jump right on them...thank you for guiding and mentoring!

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@johnbishop

Hi Bob @revbobcoulson, Welcome to Connect. I also have neuropathy in my feet and legs but I don't have any pain, just some numbness. I'm not sure if you've seen the Foundation for Peripheral Neuropathy but they have some good information on different possible complementary and alternative treatments here - https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf.

You might also be interested in the following webinar by the Foundation for Peripheral Neuropathy.
--- Webinar: Chemo-Induced Peripheral Neuropathy: https://www.foundationforpn.org/webinar-chemo-induced-peripheral-neuropathy/.

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Very helpful and encouraging!

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@georgiegirl

The concern I have is that evidently my neuropathy source is not known, according to neurological tests I have been given over the last 26 years. It is not peripheral but eminates from my lower back. I have constant electric zinging up and down my legs and feet with intermittent lightning bolt type jolts when I walk. At night the zinging is most prominent so it's sometimes difficult to go to sleep. I have used gabapentin over the years but it really does not help. I tried Lyrica but it made me loopy and off balance. Surgery has been suggested with the caveat that there is no guarantee of any real relief. I feel like I will have to live with it but am just looking to see if anyone has come up with ideas of ways they use to calm the electricity down. I would appreciate any thoughts. Thank you.

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Hello, In certainly feel for you . I have just joined this group when I read this as I wanted to suggest something that gives me relief, even though I just might be creating other problems. I have this unbelievable itch on the bottom of my feet and the only wayI can tolerate the attacks I get is to immerse the foot into ice water…sometimes for a couple of hours.
As you said, the gabapentin and Lyrica do not help in the small dosage I can manage without getting exceptionally “loopy” as you call it.
I hesitated joining this group because I do not suffer as much by any means as most of the people posting here. It’s really sad to see.
In fact all I know is that I have this “unscatchable” itch in varying degrees of severity occurring randomly though not at all as often as the other sufferers here . My Doctor has tagged it as Neuropathic, in that nothing resolves it other than time.
I was prescribed Lyrica, then Gabapentin as a more forgiving drug, and have have neurologists declare that my nerves are working just fine.
So I continue to record them for the last 5 years, carry freezer blocks with me when I can and hate every moment when I have an occurrence, with my feet in that freezing ice water for the ones above a 6 out of 10 on the discomfort scale.
So when things get really bad, try the ice, for it will give you relief until the the “attack” subsides.
I just wish I could take a pill or something that will act in say 5 mins, as 1- 2 hours takes a lot of time away from any day and is exhausting to live through.
Cheers

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