1. < Neuropathy
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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.

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cgs | @cgs | Feb 5, 2023
In reply to @ga33 "Thanks for replying. Depending on the area, symptoms are strongest as I try to sleep and..." + (show)
Profile picture for ga33 @ga33

Thanks for replying. Depending on the area, symptoms are strongest as I try to sleep and especially when awaking in the morning. I know pain from lower back and sciatica and this is not it. Burning, tingling, weakness and balance problems, however, are it. Symptoms were once confined to both feet but have advanced to the knees. Takes me a few careful minutes getting myself adjusted to meet the day. All this and I'm still very active and respond well to gabapentin 2400 mg daily, acupuncture once weekly and walking in the swimming pool are all beneficial.
Thinking I talk too much.

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Very sorry, how long have you had neuropathy?

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cgs | @cgs | Feb 5, 2023
In reply to @ga33 "You described your back as if you were looking at my MRI, bulging disc and all...." + (show)
Profile picture for ga33 @ga33

You described your back as if you were looking at my MRI, bulging disc and all. I am new here but in a few minutes I realized the extensive chronic and/or acute medical issues many of us have in common. I also have come to realize that many of these issues are autoimmune in nature as an MD once described Neuropathy. I turned down surgery at the last minute because my surgeon said he could only lessen my pain by about 40% and at my age and with a weak heart I thought the risk wasn't worth it. Your last sentence says a lot to me....I totally agree.

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Is loma lind university and mayo or clinic of any help?

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gleng | @gleng | Feb 5, 2023

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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4 replies
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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)
Profile picture for gbny1224 @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
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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)
Profile picture for Amanda Roe @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
Profile picture for John, Volunteer Mentor
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)
Profile picture for gleng @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)
Profile picture for cgs @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)
Profile picture for gleng @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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Profile picture for windsorchris
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)
Profile picture for gleng @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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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)
Profile picture for aaron_az @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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