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.

My neuropathy is from cancer treatments. Is there anything to suggest for fingers and feet, mostly toes?

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@johnbishop

Welcome Ian @iandunlop, Jogging is definitely out for me also and I'm at a minimum for walking unless the weather is good and I can use trekking poles to stay upright while walking. I have a couple of indoor exercise machines which I'm able to use without too much of a problem. One is a Teeter FreeStep Recumbent Crosstrainer and the other is a Sunny Health & Fitness Row-N-Ride PRO Squat Assist Trainer. Like you, I think it's important to stay fit but I'm a long ways from being extremely fit at 79 soon to be 80.

You might find the following webinar from the Foundation for Peripheral Neuropathy helpful: Webinar: Physical Exercise and Peripheral Neuropathy: https://www.foundationforpn.org/webinar-physical-exercise-and-peripheral-neuropathy/.

Also, there is another discussion you might find helpful:
-- Neuropathy & Exercise: https://connect.mayoclinic.org/discussion/neuropathy-exercise/.

Are you taking any medications or supplements to help with your neuropathy?

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No, I haven't been taking anything to help.

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I just joined today. My neuropathy is in my toes. I had spinal surgery and the neuropathy started right after the surgery. I only have the pain in my toes as soon as I go to bed for the night. You would think my toes had a brain!! I take Gabapentin but it affects my balance the next day. What is the recommended dose? I am 85 years old and weigh 145 lbs.

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@accobra

I've only recently found this site and joined today. Thank you all in advance for the information I'm sure I will be gathering in the coming days and months. A bit about me - I'm 73 yo, a Vietnam era Marine Corps Vet, Type 2 Diabetic. I have peripheral neuropathy in my lower legs and feet that varies by the day. On top of that I have osteoarthritis in the great toe of my right foot that causes many painful days and sleepless nights. I am currently taking 900 mg of Gabapentin daily which does seem to help with the neuropathic symptoms. My diabetes is fairly well controlled with my A1C consistently between 5.9 and 6.3.

Again, thanks for this site and I look forward to getting to know some of you as time passes.

As an aside, if any of you are interested what my name on the site means, just do a quick search for 1967 AC Cobra. It's a crazy dream for me.

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Welcome @accobra, It's fun to have a crazy dream. Even more fun when you have a song to go along with it - https://youtu.be/oc6FmZCT0Zc. It's good to hear your diabetes is fairly well controlled. I'm also a Vietnam vet but did all of my duty on a tin can off the coast supporting the ground troops. I have idiopathic small fiber PN but I don't have any pain, just some numbness and tingling in the feet and legs mostly. I posted my story in another discussion here - https://connect.mayoclinic.org/comment/310341/.

It sounds like your neuropathy symptoms are pretty much controlled by the Gabapentin. Have you made any lifestyle changes to see if they help with the diabetes and the neuropathy?

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@nancyajf8

My neuropathy is from cancer treatments. Is there anything to suggest for fingers and feet, mostly toes?

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Welcome Nancy @nancyajf8, There are a couple of other discussions you might find helpful:
-- Chemotherapy-induced neuropathy: What helps get rid of it?: https://connect.mayoclinic.org/discussion/chemotherapy-induced-neuropathy/
-- Small Fiber Neuropathy: What helps?: https://connect.mayoclinic.org/discussion/small-fiber-neuropathy/

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@yvie

I just joined today. My neuropathy is in my toes. I had spinal surgery and the neuropathy started right after the surgery. I only have the pain in my toes as soon as I go to bed for the night. You would think my toes had a brain!! I take Gabapentin but it affects my balance the next day. What is the recommended dose? I am 85 years old and weigh 145 lbs.

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Welcome @yvie, Sorry to hear your neuropathy started after your spinal surgery. Gabapentin can help with the pain but does come with it's own set of side effects. Have you discussed the side effects with your doctor or pharmacist to see if they have a recommendation on the dosage?

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@johnbishop

Welcome @yvie, Sorry to hear your neuropathy started after your spinal surgery. Gabapentin can help with the pain but does come with it's own set of side effects. Have you discussed the side effects with your doctor or pharmacist to see if they have a recommendation on the dosage?

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The surgeon prescribed 300 mg and my Internal Medicine doctor dropped it down to 100 mg. I am currently not taking either one’s advice because I find that rubbing Lidocaine on the toes stops the pain within 15 minutes. The only problem is that it wears off in about 4 hours and I have to do it again. I may go back to the Gabapentin and compromise on 200 mg. Thanks for thinking of me.

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@pnu

Have PN unknown etiology, age 76, not diabetic, no injuries, accidents, diseases, no medications, although have tried gabapentin and Lyra and 10 mg steroid for 6/days. No remarkable change. Did take Pfizer covid vaccine, 2 shots and booster, mRNA carrier. Read yet unconfirmed study done at Stanford Medical Univ, connecting spike protein to attack on nerves to feet.
Condition has increased beginning to effect walking.

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I did have all Pfifzer shot protocol for Covid. Thus us the first I have heard of relationship.

I am 75 and on Duloxetine and Gabapentin. Neurologist increasing Gabapentin. I walk 4 to 6 miles a day and it has gotten darn painful.

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@lorrainehackett

Have idiopathic peripheral Neuropathy for 15 years but lately progressing quickly. Any way to stop itm

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@lorrainehackett
@pnu
Both Gabapentin and Lyrica can take up to a month or so to be fully effective.

The only way I know to decrease progression is to repair what caused the Neuropathy.

Here is a link to The Foundation for Peripheral Neuropathy.

https://www.foundationforpn.org/

Jake

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Hi, my name is John, I am a 64 year old otherwise healthy male. I was diagnosed with idiopathic, small fiber neuropathy. The diagnosis was confirmed by a skin biopsy. My symptoms are numbness and tingling on the bottom of my feet, muscle twitching in my lower legs, slight numbness in my fingertips and numbness and tingling on the tip of my tongue which has slightly altered my sense of taste. I also have urge incontinence. I believe the SFN was brought on by an environmental exposure. I was exposed to a high concentration of carbon dioxide and carbon monoxide from a temporary natural gas heater on a construction site. I am curious if anyone else has neuropathy from this type of environmental exposure.

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