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.

@dgjestson

Thanks for the note Ray. I live in Wisconsin where beer drinking is a way of life! With an alcoholic father, I was very cautious with alcohol (excluding 4 years of college debauchery) and falsely thought "having a few beers" daily was no big deal. It wasn't until I was in my 60s that a new family doctor noted that I had alcohol in my system about every day for 40 years! Neurological problems followed soon after. I think society along with the medical profession have been sorely neglectful in not identifying the clear impacts of long-term alcohol use on the body beyond liver impacts by alcoholics. Worse, Wisconsinites brag about "being number one in alcohol consumption!" Good luck with your hand control training. Sounds like you are seeing your neuropathy symptoms progressing to the point of limited mobility. You are to be commended for staying upbeat and doing what you can to keep quality of life sustained!

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I'm inclined to agree when you say, "I think society along with the medical profession have been sorely neglectful in not identifying the clear impacts of long-term alcohol use on the body beyond liver impacts by alcoholics." Way back in the late '80s/early '90s, I self-diagnosed myself as, if not a full-blown alcoholic, certainly a "problem" drinker: no fights, no lost jobs, no busted-up partnerships (well, there was one); the chief symptom of my too-much drinking was a near-total loss of ambition. Life had become boring. And while you were in Wisconsin, where beer drinking may have been a badge of pride, I spent my life in the theatre, where failing to "do the bars" after the curtain was tantamount to a mortal sin. What a life, eh? Thank goodness we've gotten this far! ––Ray

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@dgjestson

Thanks for the note Ray. I live in Wisconsin where beer drinking is a way of life! With an alcoholic father, I was very cautious with alcohol (excluding 4 years of college debauchery) and falsely thought "having a few beers" daily was no big deal. It wasn't until I was in my 60s that a new family doctor noted that I had alcohol in my system about every day for 40 years! Neurological problems followed soon after. I think society along with the medical profession have been sorely neglectful in not identifying the clear impacts of long-term alcohol use on the body beyond liver impacts by alcoholics. Worse, Wisconsinites brag about "being number one in alcohol consumption!" Good luck with your hand control training. Sounds like you are seeing your neuropathy symptoms progressing to the point of limited mobility. You are to be commended for staying upbeat and doing what you can to keep quality of life sustained!

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What I had forgotten to mention when I quoted you ("I think society along with the medical profession have been sorely neglectful … ") was the surprise I felt when, a comparatively short while ago, my decades-worn mask of sobriety was seen through by my neurologist's MA. She and I had just finished a discussion of my recent brain MRI when, as she was exiting, she paused, half-turned at the door, and said, "Ray, I hope this isn't too personal … May I ask, were you once a pretty heavy drinker?" When I asked how she could guess, she explained that heavy drinking, no matter how long ago it occurred, leaves a "trace" on the brain, a "shadow," so to speak, "nothing to be alarmed about at this late date," but the evidence is there nonetheless. I drove away wondering, and wonder still: If only I'd been told "back then," might it have made any difference?

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gws.. I am 66, male, an Army vet with 7 years of service and an Army brat too. I was diagnosed with neuropathy that numbs and hinders my toes' movements. I have not begun seeing any specialist I am researching this SweetRestore gummy stuff advertised by the Sharks on Tv. Anything to this SweetRestore (miracle Gummy drug) or just another gimmick with star-studded "swear-to-its".

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@gws
I'd be prepared to be disappointed. I believe if all these "cures/treatments" were as good as they claim scientists, doctors and big pharmaceutical companies would be aware of them. I wouldn't try them but if you buy them I hope I'm proven wrong. Please make me eat my words.
Good luck,
Jake

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@jakedduck1

@gws
I'd be prepared to be disappointed. I believe if all these "cures/treatments" were as good as they claim scientists, doctors and big pharmaceutical companies would be aware of them. I wouldn't try them but if you buy them I hope I'm proven wrong. Please make me eat my words.
Good luck,
Jake

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Hi @gws, I would like to add my welcome along with Jake's and others. You might want to scan through the other neuropathy discussions to learn what others have shared helps. Here's a search that shows the discussions and comments for "neuropathy what helps" - https://connect.mayoclinic.org/search/?search=neuropathy+what+helps.

What really helped me in my neuropathy journey was learning more about the condition and what treatments are available. The Foundation for Peripheral Neuropathy has a good list here - https://www.foundationforpn.org/treatments/.

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I recently had a CTangiogram after a diagnosis of PAD. The vascular clinic's evaluation is I do not have PAD but neurological concerns. I had problems of pain, gait, balance and endurance. I am 84. I have been receiving Kenalog Epidurals for spinal stenosis and after the angiogram I learned that I should not have had the omnipaque dye. The result was purpura on arms, peripheral edema, rejection of medication for macular degeneration and chills. After diuretics and time I am getting back to my previous condition as I believe the conflicting medications are leaving my system. Several doctors said I could not have had a reaction to the omnipaque but the makers (General Electric) and Mayo Cinic Website indicate that it was likely. The doctor who ordered the ct angiogram was not aware of the epidurals. This is a good lesson: make sure your doctors know all treatments you are taking. I just tried using my tensor on my calf and found a pleasant though short relief of pain on one leg but no response on the other. I am very glad to find this connection group

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My daughter has neuropathy and I would like to know how to help her with dealing with it and things that she can do to help relieve some pain.

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Very informative to read the connections between alcohol use and neuopathy. I am 85 and until 10 years ago only drank occasionally - once a month or even less . At the loss of my husband of 42 years, I increased the alcohol use to daily. At that time, I had the diagnosis of ideopathic peripheral neuropathy in both feet, but was driving with no issues. I began to observe occasional situations where my foot would slip off the pedals and it alarmed me enough that I stopped driving. I also began to notice balance issues . My doctor added the use of a rolling walker due to the many falls I was experiencing. A few years ago, I started to see a physical therapist for treatment which seemed to help my balance. A month ago, I was diagnosed with venous insufficiency on both legs and now wear support hose. NO one questioned me regarding alcohol use other than the cursory "how many drins a week" question which I honestly answered, I have also have all Covid and flu shots. I had COVID in 2020 and again in 2024. Pretty sick the first time and less so the second time.

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@mimi75

My daughter has neuropathy and I would like to know how to help her with dealing with it and things that she can do to help relieve some pain.

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Welcome @mimi75, I'm sorry to hear that your daughter is having to deal with neuropathy pain. There really is no cure for neuropathy but there are a lot of different treatments available to provide some relief for the symptoms. If you haven't done any research on neuropathy and its many causes and treatments, The Foundation for Neuropathy has some good information. Here are a few of their links you might want to let your daughter know about:

-- Living Well with Neuropathy: https://www.foundationforpn.org/living-well/
-- Neuropathy Treatments: https://www.foundationforpn.org/treatments/
-- Webinars: https://www.foundationforpn.org/past-webinars/

How long has your daughter been diagnosed with neuropathy? Has she started any treatments?

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@johnbishop

Hello @dgjestson, Welcome to Connect. I am 81 and on my way to 82 this April. My story is very similar to yours. Progression and driving have been my driving force (no pun intended!) to learn more about anything that can help slow, stop, reverse my symptoms since there really is no cure. My greatest hope has been stem cell therapy but I don't think it will happen in my lifetime. I shared my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/.

The Foundation for Peripheral Neuropathy also has a list of supplements that have shown to help neuropathy. The list is included in their document Complementary and Alternative Treatments here - https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf.

Hoping you have great 2025 and continue to keep your neuropathy at bay! There are many members with neuropathy experience here on Connect that have shared what has helped them. Searching is really easy here on Connect. Have you tried using the search function on Connect?

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The Drs told me there is no cure. I’ve tried everything that is affordable. I’m done buying all that crap. I take just enough meds to get to sleep at night. Laughter is really the only medication that helps. Keep smiling!
-Rich12019

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