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.

I’m 78 and have had depressive and anxiety disorders since my 30s. The last 3 years I’ve developed neuropathy in my feet first then legs and most places in my body. I’m trying to become more aware of how these two conditions can be balanced. I’m looking for experiences and suggestions. Thank you. Vicky

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I have total knee replacement scheduled for the end of this month.

I have neuropathy as a result of taking Letrozole for breast cancer.

I am concerned about surgery results and will I be worse off having surgery and trying to recuperate.

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Profile picture for vblaze @vblaze

I’m 78 and have had depressive and anxiety disorders since my 30s. The last 3 years I’ve developed neuropathy in my feet first then legs and most places in my body. I’m trying to become more aware of how these two conditions can be balanced. I’m looking for experiences and suggestions. Thank you. Vicky

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@vblaze You are very B12 deficient. It renews nerve insulation (myelin) and makes blood cells. Alcohol numbs intestine villi, reducing absorbtion. You can easily fix yourself.

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Profile picture for jamessaxo @jamessaxo

@vblaze You are very B12 deficient. It renews nerve insulation (myelin) and makes blood cells. Alcohol numbs intestine villi, reducing absorbtion. You can easily fix yourself.

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@jamessaxo
How do you know they are B12 deficient? If it was a matter of just taking B12 none of us here would have neuropathy but here we are.

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Profile picture for bhintz777 @bhintz777

Good morning. I have numbness in my feet it feels like I am walking on gel pads and my legs are very heavy and feel numb. Sensation is hard to describe. This started approx 25 years ago

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@bhintz777
I have that gel feeling in my feet too but also like walking on bone too. The gel feeling is real bad if I dont have shoes on - so Im always wearing something. Now my toes are very stiff, not bending and Im hyper aware of them. Pretty worried Im making my feet worse when walking. Honestly not sure how much longer I can take this. Does anything help you with that gel feeling?

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I'm a 77 year old widow who was treated for stage 4 cancer - I went through 6 chemo treatments and 28 radiation sessions to try to shrink my tumor, and removal of 12" of lower colon. My cancer was colorectal and my tumor was quite large. After surgery, I had colostomy bag in place, but I could not live with that and requested I have an operation for its removal. Now I have this inability to walk straight, numbness from waist down. Will the supplement Stonehenge Health Dynamic Nerve help me? I am terrified of amputation. Should I start a regiment of Nerve pills? Both my oncologist and surgeon retired shortly after my surgery. My Primary is not of much help, just every six months tell me I'm doing okay. My husband died recently, I'm 30 miles from specialist's offices and am hoping to take Nerve to help me; that is why I am reaching out. Should I spend the money on this type of supplement?

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Profile picture for megidigo @megidigo

@jamessaxo
How do you know they are B12 deficient? If it was a matter of just taking B12 none of us here would have neuropathy but here we are.

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@megidigo
B12 makes nerves insulating sheath, myelin. B12 is released from food in stomach acid. Elders have less acid so release less B12.
Then there is alcohol. That numbs intestine and stomach villi causing less B12 absorbtion. Mussels are highest B12 food source. Just take METHYLCOBALAMIN.

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Profile picture for megidigo @megidigo

@bhintz777
I have that gel feeling in my feet too but also like walking on bone too. The gel feeling is real bad if I dont have shoes on - so Im always wearing something. Now my toes are very stiff, not bending and Im hyper aware of them. Pretty worried Im making my feet worse when walking. Honestly not sure how much longer I can take this. Does anything help you with that gel feeling?

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@megidigo I ended up with hammer toes because of the neuropathy.

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I’ve had terrible Neurophy in my feet for almost 2 years. Pins needles. Numbness. Red skin etc. I see Dr Oz with pink salt thick and others. I think it’s fake. What can truly help? Thank you

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Appreciate your warm welcome. I recently had a Boston Scientific stimulator SCS and it is helping. I am on Pregabalin and was on Cymbalta but the tremors were awful. Hoping to cut Pregabalin from 400 to 200. All meds have side effects for me. Would like to hear from people who use stimulators. I use a feel program and it works the best so far but not without issues. Thinking about trying gabapentin instead of Pregabalin in hopes of less side effects. Lyrica caused weight gain for me & that’s the last thing I need. Even a few pounds on legs with neuropathy makes a significant difference.
Great to hear from others who have experienced this unfortunate journey.

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