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.

bethunger | @bethunger | Feb 11, 2021
In reply to @johnbishop "@crisis1152 - Reminds me of an old Johnny Cash song "I've Been Everywhere Man" - Except..." + (show)
@johnbishop

@crisis1152 - Reminds me of an old Johnny Cash song "I've Been Everywhere Man" - Except it would be I've tried everything man.😊 I haven't tried that many but have tried the tens and looked into a few of the other popular cure your neuropathy advertising. Fortunately I only have numbness with my neuropathy - my story and some of our other members experiences are in the previous discussion I shared in my first post above - https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

Couple of sites you might find helpful:
- Beware Expensive Treatments of Peripheral Neuropathy: https://www.foundationforpn.org/2016/04/11/5179/
- Living Well with PN: https://www.foundationforpn.org/living-well/
- Neuropathy Commons: https://neuropathycommons.org/

You mentioned you a looking at the Calmare Scrambler Therapy in the future. There is a discussion you might want to read through here:
- Calmare (scrambler) Therapy anyone?: https://connect.mayoclinic.org/discussion/calmare-scrambler-therapy-anyone/

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I love that song

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bethunger | @bethunger | Feb 11, 2021
In reply to @faithwalker007 "Beth, all I can say from my disability is that whether you do or not does..." + (show)
@faithwalker007

Beth, all I can say from my disability is that whether you do or not does not mean life is over or less. What it does mean is that life is different. But was your life before, when you were an Educator, the same as when you were a child romping through life? No, it was different. Now you have new issues on your mind, concerns to deal with just like the Educator had over the child.
Do we want the pain, the fatigue? No, but it comes with the challenges. And the joy if we make the effort to find that as well.
I’ll be praying that you find it all including the mission.

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What a lovely way to put it. I am becoming acclimated to the new world and struggling to accompany it with joy. It helps to read of others challenges and how they have coped, so thanks

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bethunger | @bethunger | Feb 11, 2021
In reply to @johnbishop "@bethunger I think you speak for a lot of us. We would all like to get..." + (show)
@johnbishop

@bethunger I think you speak for a lot of us. We would all like to get back to doing some of our former activities. I've found that is not really possible for me so I try to find new activities that I can do and enjoy. I've had idiopathic small fiber peripheral neuropathy for 20+ years that I know of but only recently had the diagnosis in 2016. I also have obstructive sleep apnea which was diagnosed a couple of years ago but I'm pretty sure I've had the symptoms most of my adult life as I have always been a big time snorer. I've read that not all people who snore have obstructive sleep apnea but most people who have sleep apnea snore. I did find some information that might shed some light on your question does sleep apnea have anything to do with neuropathy.

Obstructive sleep apnoea: an underestimated cause of peripheral neuropathy: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2117642/

I think it takes about a year of steadily using a CPAP before you really reap the benefits of not being exhausted often. Have you thought about looking into something like the Mayo Clinic Pain Rehabilitation Center to see if it would help with the pain? - https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691

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Thanks John for the kind response; I do see a pain physician and they are helpful. I think it is just about as good as it gets for now. Finding new interests is the right direction to go. I've mourned my old life for long enough now, so here goes nothing! Thank you additionally for the great referrals, especially about the obstructive sleep and neuropathy.

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Hank | @jesfactsmon | Feb 12, 2021

Hi All, I just happened to notice that my last post was number 1000. It made me think about this past year since Jan. '20 when I stumbled upon Connect as I desperately searched for ideas to help my wife Linda's neuropathy (I am her humble research assistant), and started reading and interacting with others. My experience here has been very helpful to both myself and Linda. I have learned a little bit about a whole lot of things (emphasis on "little" so take all my advice with one big grain of salt always!). Being here has made me aware of a lot. Reading and participating in conversation here has made me think, not just about pain and health but also about morality and ethics, attitudes and social mores of today's world, as well as about myself. I just want to say that being on Connect has been a big help to us and I want to say thanks to Mayo for sponsoring this site, as well as the people like Colleen Young and others who do such a thoroughly professional job overseeing Connect, and all the marvelous people who come here to both help and be helped, with advice and support.

OK, that is off my chest. And this is post is 1001. Best, Hank

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2 replies
fiesty76 | @fiesty76 | Feb 12, 2021
In reply to @jesfactsmon "Hi All, I just happened to notice that my last post was number 1000. It made..." + (show)
@jesfactsmon

Hi All, I just happened to notice that my last post was number 1000. It made me think about this past year since Jan. '20 when I stumbled upon Connect as I desperately searched for ideas to help my wife Linda's neuropathy (I am her humble research assistant), and started reading and interacting with others. My experience here has been very helpful to both myself and Linda. I have learned a little bit about a whole lot of things (emphasis on "little" so take all my advice with one big grain of salt always!). Being here has made me aware of a lot. Reading and participating in conversation here has made me think, not just about pain and health but also about morality and ethics, attitudes and social mores of today's world, as well as about myself. I just want to say that being on Connect has been a big help to us and I want to say thanks to Mayo for sponsoring this site, as well as the people like Colleen Young and others who do such a thoroughly professional job overseeing Connect, and all the marvelous people who come here to both help and be helped, with advice and support.

OK, that is off my chest. And this is post is 1001. Best, Hank

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@jestfactsmon, And Yes! to all you wrote about Connect, Hank. I for one, am ever so glad you began exploring Connect in Jan. '20 because your 1,001 posts have helped us all in so many ways!

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Mentor
Jim, Volunteer Mentor | @jimhd | Feb 12, 2021
In reply to @jesfactsmon "Hi All, I just happened to notice that my last post was number 1000. It made..." + (show)
@jesfactsmon

Hi All, I just happened to notice that my last post was number 1000. It made me think about this past year since Jan. '20 when I stumbled upon Connect as I desperately searched for ideas to help my wife Linda's neuropathy (I am her humble research assistant), and started reading and interacting with others. My experience here has been very helpful to both myself and Linda. I have learned a little bit about a whole lot of things (emphasis on "little" so take all my advice with one big grain of salt always!). Being here has made me aware of a lot. Reading and participating in conversation here has made me think, not just about pain and health but also about morality and ethics, attitudes and social mores of today's world, as well as about myself. I just want to say that being on Connect has been a big help to us and I want to say thanks to Mayo for sponsoring this site, as well as the people like Colleen Young and others who do such a thoroughly professional job overseeing Connect, and all the marvelous people who come here to both help and be helped, with advice and support.

OK, that is off my chest. And this is post is 1001. Best, Hank

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@jesfactsmon I'm grateful to have made your acquaintance over the past year. I've never had many friends, so it means a lot to me to have a virtual friend. Thanks, Hank.

Jim

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1 reply
Hank | @jesfactsmon | Feb 13, 2021
In reply to @jimhd "@jesfactsmon I'm grateful to have made your acquaintance over the past year. I've never had many..." + (show)
@jimhd

@jesfactsmon I'm grateful to have made your acquaintance over the past year. I've never had many friends, so it means a lot to me to have a virtual friend. Thanks, Hank.

Jim

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@jimhd
I feel the same as you Jim. Your journey has been inspiring to me. Best always, Hank

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artist01 | @artist01 | Feb 16, 2021
In reply to @jakedduck1 "@sunnyflower Be cautious using a walker. I had one and trying to stand up and fell..." + (show)
@jakedduck1

@sunnyflower
Be cautious using a walker. I had one and trying to stand up and fell sideways and split my head on a table. When I tried to get up I fell again. It looked like a massacre took place in my living room. I suppose I felt overly confident with the walker. So be careful.
Take care,
Jake

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Hi, I'm Laurie. New to this site today, but I've posted many times on other Mayo sites. @jakedduck, your post about your walker accidents had me jumping to attention. I am a faithful walker user. My walker is my best friend. My main concern for all of us is, always, always, have your brakes on when you are about to use your walker.
When you fell, Jake, did you apply your brakes before you tried to get up? If not, the walker tends to swing away as you grab it, thereby causing a problem. Even when I'm using my walker in my apartment and make a short-lived stop, I always, always, apply my brakes. At my seniors' residence here, they drill that into our heads so it's an ingrained habit. If we ignore the brake-applying step when a staff member is present, they quickly scold "Put your brakes on!" This may sound elementary and even annoying (it IS!) but it made a believer out of me after I'd had a few misses when my un-braked walker swung away from me unexpectedly.
Once during that period, I did fall, and I literally couldn't get up until I was able to reach up and apply my brakes. Before the brakes were applied, I tried to use my walker to raise myself from the floor, and it just swung away from me. I hope my story might help someone from a walker accident. As I said, my walker is now my best friend!

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1 reply
sunnyflower | @sunnyflower | Feb 17, 2021
In reply to @avmcbellar "Hi Sunny. Thank you. I feel I am fortunate to have experienced life in both worlds...." + (show)
@avmcbellar

Hi Sunny. Thank you. I feel I am fortunate to have experienced life in both worlds. It has made me truly appreciate where I am presently. I had the opportunity when I was younger to bond with elderly residents because I knew the old way of life as they had experienced it. Having common grounds with them gave me the interest to listen and ask questions. In return it raised their spirit to share their life with me since I had a good understanding.
My husband does not like eating vegetables as much as I do. He is not a big fan but he will eat baby spinach in a salad. Raw form will have the most nutrients. What I do is mix baby spinach with a spring mix of greens to make a salad. I then add whatever I have on hand like cucumber, mini pepper, tomato, red onion, fresh mushroom, green olives, avocado, and pepperoncini. For a salad dressing I just simply use extra virgin olive oil and vinegar. There are different types of vinegars depending on your taste. I vary between balsamic, apple cider, and red wine. I season my salad with dried oregano, salt and black pepper, and garlic powder. Make sure to toss well. We have this at least twice a week. I also eat boiled greens with olive oil, lemon juice, and salt several times each week. I use whatever greens are available during the year. You’re welcome. Best wishes. Toni

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Toni, what is the best way to cook baby spinach? I'm trying to incorporate it into my diet. It shrinks up so much! How much should it cook and keep it's nutrients? Like it's already small leaves but how much smaller is done? I know steaming is the best and I've cooked them in a pan after I take the salmon out so there is a little EVOO, a tad butter, some melted salmon fat and all my seasonings which flavor it nicely b/c I don't like the taste. I get rid of most the fat. I use Old Bay Seasoning, Tarragon (never enough LOL!), and garlic w/ parsley. I think I've been over cooking it both ways. A big tub shrinks to almost nothing and 1/2 of it is about 17 calories not counting any fat it's cooked in. We've even pressure cooked it in our InstaPot. I didn't think something that delicate should be pressure cooked but they had us put 2 cups (was too much) of water and then it sat on a steamer thing. MMMmmmm.
Thanks and take care, Sunnyflower

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1 reply
sunnyflower | @sunnyflower | Feb 17, 2021
In reply to @jakedduck1 "@sunnyflower Be cautious using a walker. I had one and trying to stand up and fell..." + (show)
@jakedduck1

@sunnyflower
Be cautious using a walker. I had one and trying to stand up and fell sideways and split my head on a table. When I tried to get up I fell again. It looked like a massacre took place in my living room. I suppose I felt overly confident with the walker. So be careful.
Take care,
Jake

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Hi Jake! Thanks for the warning. I'm so sorry to hear you fell twice! I have a 4-wheel one w/ a seat on it. Was yours the same? I do have proprioception and sounds like you may as well? Also, with that, the Gabapentin makes me off balance and almost falling all the time!!!! It's terrible! Be safe, Sunnyflower

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