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.

Is there any treatment for numb feet due to spinal stenosis? I have no pain but no feeling either. I can walk without a cane so far.

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@johnbishop

Hello @bluesman1, I would like to add my welcome to Connect along with @givinghope and others. I'm happy to see that @givinghope has already shared some things you might find helpful. There is also another discussion where members have shared their journey with neuropathy and what they've found that helps them that you might want to read.

Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

One of the things that I think has really helped me is learning as much as I can about neuropathy. I've made a few lifestyle changes also that I think have helped - eating healthier, eliminating processed foods and staying away from sugar and alcohol, exercise and the tough one for me - losing weight. The Foundation for Peripheral Neuropathy has some information you might find helpful on maintaining a healthy lifestyle here - https://www.foundationforpn.org/living-well/lifestyle/

What is your biggest challenge with neuropathy?

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I also live in Newfoundland and have been suffering with small fiber neuropathy for 4 years..the meds I have tried just don't make any difference at all..go on the opioids is the next step I'm told...other than drugs I have had no help in managing this pain. I must admit I was going to go to a pain support group then Covid struck..I am very elderly and I cannot do the virtual thing. Especially for so many hours a day
.I fell in January and broke my ankle in two places
.I had surgery and am using a walking boot now..the neuropathy is making recovery so difficult two pains to deal with and the neuropathy is the worst. Difficult not to get depressed..it seems people don't want to hear about it anymore my house seems like a jail
I am glad I found this group and your wisdom John

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I have suffered for 4-5 years with small fiber neuropathy I am elderly and hadn't planned living life like this no medications work.. sometimes I get the feeling the doctors can't help. I needed to reach out to people experiencing the same pain. I live in Newfoundland..a small beautiful place
My neighbor's are great also some very good friends..however isolation is getting to me as I fell January and broke my ankle in two places. A very slow recovery
Depression is difficult to keep at bay but I'm trying..the neuropathy is making physio so difficult. Thank you for this forum I am new but I look forward to your support
Thank you so much

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@herbertguy

I also live in Newfoundland and have been suffering with small fiber neuropathy for 4 years..the meds I have tried just don't make any difference at all..go on the opioids is the next step I'm told...other than drugs I have had no help in managing this pain. I must admit I was going to go to a pain support group then Covid struck..I am very elderly and I cannot do the virtual thing. Especially for so many hours a day
.I fell in January and broke my ankle in two places
.I had surgery and am using a walking boot now..the neuropathy is making recovery so difficult two pains to deal with and the neuropathy is the worst. Difficult not to get depressed..it seems people don't want to hear about it anymore my house seems like a jail
I am glad I found this group and your wisdom John

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Hello @herbertguy, Welcome to Connect. Breaking an ankle can be tough even if you don't have neuropathy. It sounds like the surgery went OK which is good but I know recovery can be the pits especially if you don't have any help. What helps me dull the symptoms is to keep my mind occupied with other thoughts, activities around the house or just enjoying looking out the window at my bird feeder. Here's a discussion I started a few years ago to share a few photos I took through the window in my computer room. It helped me during the Covid lockdown and through a couple of surgeries to keep my thinking on the positive side.
-- What's outside of your picture window today?
https://connect.mayoclinic.org/discussion/whats-outside-of-your-picture-window-today/
Do you have any hobbies or activities you enjoy that you are able to do at home to help keep your mind occupied?

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@herbertguy

I have suffered for 4-5 years with small fiber neuropathy I am elderly and hadn't planned living life like this no medications work.. sometimes I get the feeling the doctors can't help. I needed to reach out to people experiencing the same pain. I live in Newfoundland..a small beautiful place
My neighbor's are great also some very good friends..however isolation is getting to me as I fell January and broke my ankle in two places. A very slow recovery
Depression is difficult to keep at bay but I'm trying..the neuropathy is making physio so difficult. Thank you for this forum I am new but I look forward to your support
Thank you so much

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Hi @herbertguy, I forgot to mention that it might be helpful to scan through the list of discussions in the Neuropathy Support Group to learn what others have shared helps. Here's a link to the list of discussions - https://connect.mayoclinic.org/group/neuropathy/

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@johnbishop

Hello @herbertguy, Welcome to Connect. Breaking an ankle can be tough even if you don't have neuropathy. It sounds like the surgery went OK which is good but I know recovery can be the pits especially if you don't have any help. What helps me dull the symptoms is to keep my mind occupied with other thoughts, activities around the house or just enjoying looking out the window at my bird feeder. Here's a discussion I started a few years ago to share a few photos I took through the window in my computer room. It helped me during the Covid lockdown and through a couple of surgeries to keep my thinking on the positive side.
-- What's outside of your picture window today?
https://connect.mayoclinic.org/discussion/whats-outside-of-your-picture-window-today/
Do you have any hobbies or activities you enjoy that you are able to do at home to help keep your mind occupied?

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Thank you so much for your reply..this is very new for me so bear with me please..I do have support with home care workers..they are pretty good..it just seems I have lost control of my life for now. I am an avid walker with my little Havsnese buddy... The irony of all this is the only relief I can hey from the severe burning and tingling is walking..having that removed from my life is a nightmare..if only I could get some sleep I will get through this
Because I am an old person they don't want to give me anything with enough punch to help me sleep a few hours..do you have any ideas? You are so knowledgeable. I play the piano listen to audio books..it's awful how pain can take over your life

Congratulations to you dear for being so strong

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@herbertguy

Thank you so much for your reply..this is very new for me so bear with me please..I do have support with home care workers..they are pretty good..it just seems I have lost control of my life for now. I am an avid walker with my little Havsnese buddy... The irony of all this is the only relief I can hey from the severe burning and tingling is walking..having that removed from my life is a nightmare..if only I could get some sleep I will get through this
Because I am an old person they don't want to give me anything with enough punch to help me sleep a few hours..do you have any ideas? You are so knowledgeable. I play the piano listen to audio books..it's awful how pain can take over your life

Congratulations to you dear for being so strong

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You might find some suggestions to help with the sleep from this webinar from last year...

FPN Webinar: Navigating Sleep with PN

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I am taking 0.5mg of Clonazepam twice per day but I don’t know whether this is helping or making my Peripheral Neuropathy worse . I have contacted so many people and organisations who really ought to have an answer but they don’t.
I ask each of them if Clonazepam can cause my peripheral neuropathy but they never have an answer. I don’t want to go through the pain of withdrawal symptoms by stopping the Clonazepam only to find that nothing improves.
Has anyone had a similar experience with Clonazepam and found the answer..

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@scain

I also have most of my balance issues while turning. We have a 6' island in the kitchen that leads to the backyard or the living room. I use this island as a literal touchstone (ha!). No need to grip it or even hold on to it. Simply placing one finger on it gives me all the balance needed. Has anyone with PN figures out why turning is a common problem for us. I did take your recommendations and just ordered a lightweight, portable walker.
Thanks everyone!

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My condition is accompanied by a partial paralysis of my left foot. I can’t lift my toe or my foot. I’m also unable to tilt that foot to the left so I have no resistance to rolling my ankle. I can’t steer or point that foot to the left so I often lose my balance when I turn to the left. My care team has narrowed this down to some sort of damage or inflammation of my sciatic nerve at some point in my leg. My next step will be a lumbar puncture and another MRI. I mention this here because, along with the paralysis, I have all the peripheral neuropathy symptoms described in so many of these posts, the pins and needles, numbness, electric shocks, pain. I’m wondering if there’s anyone else who has experienced this paralysis along with their PN.

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I am having extreme electric shocks pins and needles and numbness mainly just in my left foot. Just wanted to see what options yall are doing. I am diabetic.

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