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.

Amanda Roe | @amandajro | Feb 5, 2023
In reply to @gbny1224 "How bad are your flare ups ? I'm getting flare ups just out of the blue..." + (show)
@gbny1224

How bad are your flare ups ? I'm getting flare ups just out of the blue every day they last about 15 mins. Suicide level pain on the legs and somewhat on the shoukders. The worse one I had the other day my legs and shoulders hurt and was crying for about 40 mins. Also my arms hands and head were burning. I got in my truck and was headed to the er because this one lasted much longer. I ended up turning around when it finally went away. Not much they can do pointless to go really.

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@gbny1224 you will notice that I have moved your post on flare ups into an existing discussion that I see you've joined previously. You can find your post here now:
- Living with Neuropathy - Welcome to the group: https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

Have you ever tried something topical like arnica cream to see if it would reduce your pain during flare ups?

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1 reply
aaron_az | @aaroncush | Feb 5, 2023
In reply to @amandajro "@gbny1224 you will notice that I have moved your post on flare ups into an existing..." + (show)
@amandajro

@gbny1224 you will notice that I have moved your post on flare ups into an existing discussion that I see you've joined previously. You can find your post here now:
- Living with Neuropathy - Welcome to the group: https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

Have you ever tried something topical like arnica cream to see if it would reduce your pain during flare ups?

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My personal feeling is that moving a discussion to a 5,000+ post discussion means it is harder for people to find things. I think it would have been better to reference the discussion you found rather than burying it. Just my 2 cents.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Feb 5, 2023
In reply to @gleng "My name is Glen G. I have neuropathy in my feet. It started near my toes,..." + (show)
@gleng

My name is Glen G. I have neuropathy in my feet. It started near my toes, but is now spreading to my whole feet. Two Doctors said that nothing can be done for it. I have read that walking and proper diet is the best treatment for it. I have always walked a lot. I belong to two walking groups. After walking a while it feels like I am walking on stumps.

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Hi Glen @gleng, Welcome to Connect. It sounds like your neuropathy started similar to mine. I posted my story earlier on Connect here - https://connect.mayoclinic.org/comment/310341/. Exercise and a healthy diet certainly can't hurt your neuropathy and there are other benefits for your overall health. Here is some information from the Foundation for Peripheral Neuropathy on living well with neuropathy that you might find helpful -- https://www.foundationforpn.org/living-well/.

How long have you had neuropathy? Have you tried any complementary or alternative treatments?

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berniep | @berniep | Feb 6, 2023
In reply to @cgs "Does anyone on here have a problem with drinking three or four cups of coffee sometimes..." + (show)
@cgs

Does anyone on here have a problem with drinking three or four cups of coffee sometimes for their achiness when they get up in the morning and do they have problems with that affecting their neuropathy in any way because of the caffeine

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Coffee has not been problematic although I have converted to decaffeinated just to play it safe. Also, be careful what you are adding to your coffee, particularly sugar.

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berniep | @berniep | Feb 6, 2023
In reply to @gleng "My name is Glen G. I have neuropathy in my feet. It started near my toes,..." + (show)
@gleng

My name is Glen G. I have neuropathy in my feet. It started near my toes, but is now spreading to my whole feet. Two Doctors said that nothing can be done for it. I have read that walking and proper diet is the best treatment for it. I have always walked a lot. I belong to two walking groups. After walking a while it feels like I am walking on stumps.

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Correct. Walking is good to do to keep the nerves as active as possible. Also, pay attention to what you are ingesting. Vitamin B-6 toxicity is well documented.

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windsorchris | @windsorchris | Feb 7, 2023
In reply to @gleng "My name is Glen G. I have neuropathy in my feet. It started near my toes,..." + (show)
@gleng

My name is Glen G. I have neuropathy in my feet. It started near my toes, but is now spreading to my whole feet. Two Doctors said that nothing can be done for it. I have read that walking and proper diet is the best treatment for it. I have always walked a lot. I belong to two walking groups. After walking a while it feels like I am walking on stumps.

Jump to this post

Try changing shoes. I recommend Hokas and keep walking.

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Amanda Roe | @amandajro | Feb 7, 2023
In reply to @aaroncush "My personal feeling is that moving a discussion to a 5,000+ post discussion means it is..." + (show)
@aaroncush

My personal feeling is that moving a discussion to a 5,000+ post discussion means it is harder for people to find things. I think it would have been better to reference the discussion you found rather than burying it. Just my 2 cents.

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Hello @aaroncush. Moving a post into an existing discussion allows for those already in the discussion to be notified, provided their notifications are turned on, which can more quickly provide a connection with, and for, members. As well, keeping comments on the same topic under one discussion also makes finding discussions easier for members.

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michael149 | @michael149 | Feb 8, 2023

i suggest you all work work with a physical thearapist specializing in neuropathy -like i have-she has tauught me exercises that help me trmendoulusly-also I take one half a pill of effexor twice a day which also helps-Mike Storman

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fluffy10 | @fluffy10 | Feb 8, 2023

Hi, i am mike. I am interested in PHN caused by shingles. Is there a group for this condition?
Thanks,
Mike

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Feb 8, 2023
In reply to @fluffy10 "Hi, i am mike. I am interested in PHN caused by shingles. Is there a group..." + (show)
@fluffy10

Hi, i am mike. I am interested in PHN caused by shingles. Is there a group for this condition?
Thanks,
Mike

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Hi Mike @fluffy10, Welcome to Connect. PHN is under the Neuropathy group. There are several discussions that might be helpful:
-- Shingles and Postherpetic Neuralgia and Pain: https://connect.mayoclinic.org/discussion/shingles-and-neuropathic-pain/
-- Postherpetic neuralgia from Shingles: Low Level Laser Therapy: https://connect.mayoclinic.org/discussion/chronic-phn-from-shingles-red-light-cold-laser-therapy/.
-- Postherpetic Neuralgia (Shingles) nerve damage: https://connect.mayoclinic.org/discussion/postherpetic-neuralgia-shingles-nerve-damage-around-eye-eyebrow-forehead-scalp-8/.

According to the CDC - "The most common complication of shingles is long-term nerve pain called postherpetic neuralgia (PHN)." -- https://www.cdc.gov/shingles/about/complications.html.

Do have PHN from shingles?

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