1. < Neuropathy
Moderator

Living with Neuropathy - Welcome to the group

Posted by Colleen Young, Connect Director @colleenyoung, Jul 14, 2017

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.

steeldove | @steeldove | Sep 13, 2020

For all of those with severe neuropathy pain in the feet and ankles, I urge you to talk with your doc/pain management about the possibility of getting a peripheral nerve stimulator. Take a look at SPR Peripheral Nerve Stimulator (SPRINT) and Bioness StimRouter. SPR is A 60-day treatment; StimRouter is a permanent implant.

REPLY
1 reply
sunnyflower | @sunnyflower | Sep 13, 2020
In reply to @colleenyoung "Hi everyone, Here are a few tips on managing replies, emails and setting your notification preferences...." + (show)
@colleenyoung

Hi everyone,
Here are a few tips on managing replies, emails and setting your notification preferences.

Replies and @mentions
It is not imperative to include a specific member's @userame if you are posting to all members following the discussion. @mentions are optional. This article explains more.
- Replies and @mentions: How do I know who is replying to whom? https://connect.mayoclinic.org/page/about-connect/newsfeed-post/replies-and-mentions-how-do-i-know-who-is-replying-to-whom/

Beware that each post = an email
Because each post generates an email to each member following this discussion, it is advisable to stay on topic. Maybe use a "like" instead of a one word response such as "thank you".

Setting your notification preferences
When you follow a group (subscribe or become a member of a group) you can choose between getting an email for each post or an email digest or summary:
- Email me when new posts appear and include in my email digest.
- Include messages in my email digest only.
Learn more about how to follow and unfollow a group, set your preferences and more here: https://connect.mayoclinic.org/get-started-on-connect/

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Thanks Colleen. I think I get it now. Just want to clarify one thing. I had asked how to initiate a new post vs new discussion. It seems the only way to initiate a new post is via a reply to an existing conversation?? Ooops, now all of a suddent I question myself if I know how to initiate a new discussion! And, is a new discussion the same as a new "topic". Oh Lord, I need a tutor! I'm so embarassed by how compromised my brain/memory/focus/concentration/tracking, etc. is! I've always been on top of those things. This Gabapentin is horrible!

BTW, eventually I would like to share my experience w/ CBD oil. I was under the Tx plan of a world renouned doctor whom Kaiser Permanente invited to speak at their pain conference a couple of summers ago in Hawaii, Dr. Allan Frankel. He works w/ chemists, growers, etc., and is well known for dosing. Since I should post under that CBD discussion, I'm thinking a lot of people won't see it b/c they're used to using the current discussions on the main neuropathy disscussion. Or, am I wrong? I know I don't go back to view specific topics related to neuropathy. My info could qualify for the "pain" topic as well. What do you suggest to maximize visibility on what I have to say since it's pretty good info?

Thanks again so much, Sunnyflower

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summertime4 | @summertime4 | Sep 13, 2020

@busterbrown Please explain as best you can what the foot, toes, ankles neuropathy feels like. Every night I am awoken with horrible pain in my feet, ankle and toes. I am diagnosed with peripheral neuropathy, but this is getting worse. I dread going to bed at night

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sunnyflower | @sunnyflower | Sep 13, 2020
In reply to @colleenyoung "Hi everyone, Here are a few tips on managing replies, emails and setting your notification preferences...." + (show)
@colleenyoung

Hi everyone,
Here are a few tips on managing replies, emails and setting your notification preferences.

Replies and @mentions
It is not imperative to include a specific member's @userame if you are posting to all members following the discussion. @mentions are optional. This article explains more.
- Replies and @mentions: How do I know who is replying to whom? https://connect.mayoclinic.org/page/about-connect/newsfeed-post/replies-and-mentions-how-do-i-know-who-is-replying-to-whom/

Beware that each post = an email
Because each post generates an email to each member following this discussion, it is advisable to stay on topic. Maybe use a "like" instead of a one word response such as "thank you".

Setting your notification preferences
When you follow a group (subscribe or become a member of a group) you can choose between getting an email for each post or an email digest or summary:
- Email me when new posts appear and include in my email digest.
- Include messages in my email digest only.
Learn more about how to follow and unfollow a group, set your preferences and more here: https://connect.mayoclinic.org/get-started-on-connect/

Jump to this post

Me Again, My hubby just created a "rule" for my Mayo Neuropathy emails to go into a folder named that. Problem, not all emails say "neuropathy" anywhere in the email; specifically a "like" from someone. What to do? Thanks so much, Sunnyflower

REPLY
2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Sep 13, 2020
In reply to @sunnyflower "Me Again, My hubby just created a "rule" for my Mayo Neuropathy emails to go into..." + (show)
@sunnyflower

Me Again, My hubby just created a "rule" for my Mayo Neuropathy emails to go into a folder named that. Problem, not all emails say "neuropathy" anywhere in the email; specifically a "like" from someone. What to do? Thanks so much, Sunnyflower

Jump to this post

@sunnyflower, When you look at the emails in your Connect folder that your husband set up for you, the subject of the email contains the name of the discussion. It will also tell you if someone mentioned you in the discussion or if someone liked a post you made.

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2 replies
avmcbellar | @avmcbellar | Sep 13, 2020
In reply to @sunnyflower "Me Again, My hubby just created a "rule" for my Mayo Neuropathy emails to go into..." + (show)
@sunnyflower

Me Again, My hubby just created a "rule" for my Mayo Neuropathy emails to go into a folder named that. Problem, not all emails say "neuropathy" anywhere in the email; specifically a "like" from someone. What to do? Thanks so much, Sunnyflower

Jump to this post

@sunny-flower, the email does state which discussion it is from. Look below the blue where you click to reply. Also, if you look at the very top of the email it states the topic,

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1 reply
sunnyflower | @sunnyflower | Sep 13, 2020
In reply to @johnbishop "@sunnyflower, When you look at the emails in your Connect folder that your husband set up..." + (show)
@johnbishop

@sunnyflower, When you look at the emails in your Connect folder that your husband set up for you, the subject of the email contains the name of the discussion. It will also tell you if someone mentioned you in the discussion or if someone liked a post you made.

Jump to this post

Thx but we looked and there are some that do not contain the word, "neuropathy" anywhere in the email. . Working on it; have n'fied Colleen.

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2 replies
Laura48(Laura Walters) | @david33 | Sep 13, 2020
In reply to @jesfactsmon "@david33 Laura, I am reading your posts since February of this year. You mention you were..." + (show)
@jesfactsmon

@david33
Laura, I am reading your posts since February of this year. You mention you were hit in the head with a block of wood around 2017 or so. You also say you do not remember much since 2012. What happened in 2012?

It sounds like you have seen a lot of doctors and have been prescribed a fair bit of medicine (drugs). Plus it sounds like the doctors have been in some cases less than professional in their advice to you and in some cases rude. Not sure where you are (you do mention Pittsburgh at one point) but it doesn't sound like they have great docs wherever you are going. You describe having brain fog at times, and losing track of reality as well.

You have had injuries, multiple surgeries, multiple prescriptions. It's a lot. Maybe someone else will come up with some good ideas for you. Meanwhile, here is my suggestion for now:

You said you are big on journal writing. I hope you have a record of all that you have been through since your troubles started. I would try to organize a detailed list of all of your health issues CHRONOLOGICALLY. List all of your medical visits, what happened at each one and what drugs you were prescribed, also who your doctors were and each of their specialities. Put down how long you took each drug and when you were on each one. Do it from the first to the last (chronologically) because it will help to make better sense of everything.

I would NOT include your emotional/relationship issues that you have described. Just the medically oriented info. That way your issues will be clearer for the GOOD doctor you are going to see, hopefully soon. I am sorry for all that has happened to you, it is a very sad story. I do hope someone will help you. All that we on Mayo Connect can do is try to make suggestions that might help.

Keep posting, you are doing great at that! Hank

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HankB @jesfactsmon
Hello Hank,
In 2012, was the trailer fire. I lost 7 dogs and 6 cats in there. I can honestly say now that my mind is stuck on the fact that it was arsoned and the reason I believe this is because I lived in this trailer for 2 years and when my family would leave we would turn the main breaker off. April 19th 2012 I finally got my bill of sell and made plans to move the trailer into a country area, on April 21st 2012 we left to go and get some flowers and we decided to give our neighbor one of our babies for a surprise, (friend of ours at the time) without him knowing. When we we heading home he called my husband and asked 3 times if we had our daughter which he answered "yes".
When I was told about the fire, I kept screaming "breck in back door, bust in the glass" but he said it too late. A 13 year old female seen it all and told me she tried to save them while others just watched. When I told the person who was supposed to get a pup and he told me "if I had known that, the fire would never have happened."
My mind shut down after that, I had to go through therapy and put on meds to help me to cope of the loss of my fur babies.

Before the accident of getting hit in the head with a log, I also hit my own head with the claw part of a hammer which the doctors claim I did it on purpose. My husband told the doctor he could understand if I hit my head with the hammer twice but 6 times without me knowing I was really doing it?
This is why I'm scared of having brain fog, or clouds, I can't think or communicate when this happens and my husband makes sure that I'm in a safe place and keeps a close I on me so that I don't do harm to myself or others when this happens.

I was told I have chronic issues to where I make myself have medical problems and that I'm looking for attention.

Thank you for the idea about writing a journal on this, and I will start right away, maybe I can pin point where the fog, or cloud started and get to the bottom of what is going on.
SORRY for writing a story.

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2 replies
Laura48(Laura Walters) | @david33 | Sep 13, 2020
In reply to @johnbishop "Hi Laura @david33, You ask questions that I'm sure we have all had on our journey..." + (show)
@johnbishop

Hi Laura @david33, You ask questions that I'm sure we have all had on our journey with neuropathy. It can be difficult, painful and something we need to learn more about so that we can figure out a way to live as well as we can with the condition. Here's something I found that talks to your concern about eating and the pain.

"Neuropathy worse after eating -- Your nerves need the right balance of nutrients to function properly, and they are also vulnerable to toxins. So what you eat and drink, as well as how your body absorbs the nutrients from what you consume, can contribute to or exacerbate neuropathy, or peripheral nerve damage.May 24, 2018" excerpt from -- How Diet Can Play a Role in Neuropathy Prevention and Management: https://www.everydayhealth.com/neuropathy/diet-understanding-connection/

Here are some other discussions on Connect about neuropathy & exercise.
-- Neuropathy & Exercise: https://connect.mayoclinic.org/discussion/neuropathy-exercise/
-- Peripheral Neuropathy - Stretching and Exercise: https://connect.mayoclinic.org/discussion/peripheral-neuropathy-stretching-and-exercise/

You might also want to check out the Member Neuropathy Journey Stories: What's Yours? discussion to learn what others have found helpful and if you feel comfortable use the guidelines in the discussion description to share your own neuropathy story -- https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

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John, Volunteer Mentor @johnbishop
Thank you I will check this out.
My pain started back in 2010 and got worse after my gallbladder was removed in 2011. Doctors has put me on more medicine to help with the pain but nothing helps. It doesn't matter what I eat, i still get pain and the doctors have no clue what to do, and they offered nerve blocks to see if that will help.

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sunnyflower | @sunnyflower | Sep 13, 2020
In reply to @avmcbellar "@sunny-flower, the email does state which discussion it is from. Look below the blue where you..." + (show)
@avmcbellar

@sunny-flower, the email does state which discussion it is from. Look below the blue where you click to reply. Also, if you look at the very top of the email it states the topic,

Jump to this post

Yes, most do but some definitely do not. Anywhere! Believe me, we looked. Could be it was some replies, but underneath in blue that is usually there, isn't in some. Thx for taking the time. 😊

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