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.

@ray666

Hi, @rca

I, too, have balance issues. No bothersome numbness, but lots of wobbliness as I try to go about. Have you noticed that you are especially unsteady after sitting for a while, as little as 20-30 minutes? That's one of the mysterious personalities of my idiopathic PN.

The only thing that helps me dispel this after-sitting wobbliness is not sitting back down but instead staying on my feet and moving about, but with added caution; I'm a "wall-walker," too! Continuing to move may not be of help to you or anyone else, and it may not be of help to me forever, but it's helping for now.

I wish you the very best in managing your neuropathy!

Cheers!
Ray (@ray666)

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I don't have after sitting wobbliness. It's when I walk!!!! I am active and don't sit much except when I am working on artwork. Does anyone here have to use a walker when walking down the street or anywhere. I do Simple question.

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My name is Richard, um. From an actual Tennessee area in the recently diagnosed with small fiber in the rapidly been to months among gamer patient. But she wants to put me I like different medicine Do you have a pen? And it's been makes me feel better but still I have lots of pains Swelling not sure what to do, what about Compressions

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@smallfiberpain

My name is Richard, um. From an actual Tennessee area in the recently diagnosed with small fiber in the rapidly been to months among gamer patient. But she wants to put me I like different medicine Do you have a pen? And it's been makes me feel better but still I have lots of pains Swelling not sure what to do, what about Compressions

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Welcome @smallfiberpain, Sorry to hear you have just been diagnosed with small fiber neuropathy. Can you share a little more about your pain symptoms and swelling you mentioned? Were you prescribed compression socks to help with the swelling?

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Would like to talk with someone that has nueropathy all over body. Mine started in legs 5 months ago and now covers every inch of body. Been to two nuerologist. No answers. Taking gabepentin x 1 month. Cymbalta x 2 days. I am not a diabetic.

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@cdchance

Would like to talk with someone that has nueropathy all over body. Mine started in legs 5 months ago and now covers every inch of body. Been to two nuerologist. No answers. Taking gabepentin x 1 month. Cymbalta x 2 days. I am not a diabetic.

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Welcome @cdchance, Sorry to hear you haven't gotten any answers to help with your neuropathy. There are several other discussions you may want to view where members mention neuropathy all over their body.

--- All over neuropathy: https://connect.mayoclinic.org/discussion/all-over-neuropathy/
--- Twitching spasms all over neuropathy/meds: https://connect.mayoclinic.org/discussion/twitching-spasms-all-over-neuropathymeds/
--- Fibromyalgia or Neuropathy: Pain all over not just feet and legs?: https://connect.mayoclinic.org/discussion/pain-all-over-not-just-feet-and-legs/

Did either of the neurologists you saw provide a diagnosis or do any tests?

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@johnbishop

Welcome @cdchance, Sorry to hear you haven't gotten any answers to help with your neuropathy. There are several other discussions you may want to view where members mention neuropathy all over their body.

--- All over neuropathy: https://connect.mayoclinic.org/discussion/all-over-neuropathy/
--- Twitching spasms all over neuropathy/meds: https://connect.mayoclinic.org/discussion/twitching-spasms-all-over-neuropathymeds/
--- Fibromyalgia or Neuropathy: Pain all over not just feet and legs?: https://connect.mayoclinic.org/discussion/pain-all-over-not-just-feet-and-legs/

Did either of the neurologists you saw provide a diagnosis or do any tests?

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First nuerologist ordered MRI of Brain which was normal. He said no followup was needed, turned out it was in process of retiring , he didn't offer thing further. Second nuerogist order labs all normal, NCS he said had nueropathy in legs. Does not want to see me again to next year. He ordered Gabepentin and Cymbalta.

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@cdchance

First nuerologist ordered MRI of Brain which was normal. He said no followup was needed, turned out it was in process of retiring , he didn't offer thing further. Second nuerogist order labs all normal, NCS he said had nueropathy in legs. Does not want to see me again to next year. He ordered Gabepentin and Cymbalta.

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If you want to learn more about neuropathy and different options for treatment, the Foundation for Neuropathy is a great resource of information - https://www.foundationforpn.org/resource-library/.

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@rca

I don't have after sitting wobbliness. It's when I walk!!!! I am active and don't sit much except when I am working on artwork. Does anyone here have to use a walker when walking down the street or anywhere. I do Simple question.

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Yes, there are days when I need my walker or cane. Some days I’m weaker than others, and feel it’s safer if I want to help minimize the risk of falling. My walker is a great tool to have as I need help stepping up/down curbs or any other little steps, and I need the walker’s assistance in stores to be able to reach & stoop for items. I also don’t do well walking unassisted while carrying something, so again, my walker is a tool to be able to do that. I’ve done this now since age 52.
But I try to avoid using my walker or cane when I’m having good days and know I won’t be confronted with obstacles on my course. I don’t like how my posture has been impacted by using them, plus it’s more exertion on my upper body while leaning on them.
So yes, I use them to avoid falls and injuries, anything to be smart. My goal is to stay upright and hope to never have to be confined to a wheelchair again as much as I might be able to avoid it.

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@dbeshears1

Yes, there are days when I need my walker or cane. Some days I’m weaker than others, and feel it’s safer if I want to help minimize the risk of falling. My walker is a great tool to have as I need help stepping up/down curbs or any other little steps, and I need the walker’s assistance in stores to be able to reach & stoop for items. I also don’t do well walking unassisted while carrying something, so again, my walker is a tool to be able to do that. I’ve done this now since age 52.
But I try to avoid using my walker or cane when I’m having good days and know I won’t be confronted with obstacles on my course. I don’t like how my posture has been impacted by using them, plus it’s more exertion on my upper body while leaning on them.
So yes, I use them to avoid falls and injuries, anything to be smart. My goal is to stay upright and hope to never have to be confined to a wheelchair again as much as I might be able to avoid it.

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Hi Debbie, Have you seen the upright walkers? I use the regular walker at night when I have to get up for bathroom visits because I don't trust my balance at night when getting up. I've seen the upright walkers and have thought about getting one when the time comes that I have to use one for regular walking. I use trekking poles now and they actually work pretty good for better posture when walking.

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@johnbishop

Hi Debbie, Have you seen the upright walkers? I use the regular walker at night when I have to get up for bathroom visits because I don't trust my balance at night when getting up. I've seen the upright walkers and have thought about getting one when the time comes that I have to use one for regular walking. I use trekking poles now and they actually work pretty good for better posture when walking.

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No, have not looked into upright walker but will google. I keep my walker and cane settings as high as they’ll go, but they’re not quite tall enough. I love trekking poles! But they normally don’t get in the car with me, as my walker is normally my Swiss Army knife in that it has a pouch (my purse items) and hook to allow me to carry bags. So in my small car, a spare cane stays there, but my walker is what normally gets loaded in & out of the car vs the trekking poles. Like you, my walker stays by my bedside at night, but luckily only to hold onto the 5 seconds it takes me to adjust to standing before starting my steps.

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