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 name is Brenda and I am interested in Brachial plexus injury and/or axillary nerve neuropathy. I had a shoulder revision in November and have been suffering since then. Would like to discuss my options.

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@dlm

Cold feet..any answers

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Have you had your peripheral arteries checked?

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Started feeling cold body several months ago. Then colder feet a month ago. last week end got numbness pins and needles in tops and bottoms of toes and halfway back on feet. This weekend started feeling left shoulder tingle, then both. now I am waking up for last two days with numb arms and hands. I had heart rate problems in summer to fix A fib, the, then cardioversion end of summer only to be diagnosed with bladder cancer in November. Had Bladder resection 3 weeks ago and have now just started BCG treatments Friday. I have been depressed with a lot of anxiety for months now. Is there any connection that anybody knows of with any or all of this stuff. The GBC treatments does cause inflammation as well as anxiety so maybe just too much, although I will admit I am on numerous anti anxiety meds as well as gabapentin which I I am trying to ween off of because I think it hinders more than it helps. Any thoughts.? Thanks Steve

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@sugarloaf65

Have you had your peripheral arteries checked?

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No, I haven't had my peripheral arteries checked. Can it cause the same symptoms?

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@tgcorin

I have severe neuropathy only in my feet, & I am not diabetic. I also have RLS often.
I have tried neuronton & gabapenten (sp?) to no avail. I have insomnia mostly because of the pain and restlessness. I would like to know what others with this condition do for relief. I have had this for over ten years, I am 92 years old, female.

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So far the only thing that gets me a goodnight sleep is imovane (zopiclone) but it is very addicting. I get only 10 for a month

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Has anyone tried or heard any positive feedback about the use of Lions Mane (mushroom) for the treatment of neuropathy? A nurse whose dad suffers from severe neuropathy told my mom that there are encouraging studies regarding it's use for nerve damage. I can find studies relating to animals but not humans thus far. I am always leery of supplements that are not regulated.

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@madison2023

Has anyone tried or heard any positive feedback about the use of Lions Mane (mushroom) for the treatment of neuropathy? A nurse whose dad suffers from severe neuropathy told my mom that there are encouraging studies regarding it's use for nerve damage. I can find studies relating to animals but not humans thus far. I am always leery of supplements that are not regulated.

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It is on my list to eventually try. The key would be to find a high quality product and then what dosage to get any benefit.

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I guess I will be trying it tomorrow. My wife really likes a particular brand so I am trying that one. Amazon is promising same day but I doubt it will get here that quickly. Valerian root tonight, Lion’s Mane tomorrow. Welcome to my personal science experiment 😀.

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@rblogan

So far the only thing that gets me a goodnight sleep is imovane (zopiclone) but it is very addicting. I get only 10 for a month

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i take 1 half pill of Effexor at 9pm every night and it helps me sleep and another half at 91am-my doctor said it is good for neuropathy

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@tgcorin

I have severe neuropathy only in my feet, & I am not diabetic. I also have RLS often.
I have tried neuronton & gabapenten (sp?) to no avail. I have insomnia mostly because of the pain and restlessness. I would like to know what others with this condition do for relief. I have had this for over ten years, I am 92 years old, female.

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I also take 2 gabapentin at night, naproxen 500 mg, Nature’s Bounty Sleep3 (purple tablet works best for me). It gets me to sleep & I stay asleep. Best rest ever! I suffer from spinal stenosis and use cold packs, sometimes heating pad, getting my 4th epidural inj tomorrow for a better Spring☺️

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