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.

Mentor
John, Volunteer Mentor | @johnbishop | Jul 22, 2023
In reply to @robindancer5678 "I have a similar question. After I had Covid, I developed Sibo. I am wondering if..." + (show)
@robindancer5678

I have a similar question. After I had Covid, I developed Sibo. I am wondering if this small intestinal bacterial overgrowth infection possibly could have caused my small fiber polyneuropathy? It’s hard to know the relationships - Did the Covid cause the SIBO, did the COVID cause the Peripheral Neuropathy, did the SIBO cause the or a Peripheral Neuropathy or is it all idiopathic and these are unrelated complaints? Or do I simply stop wondering and just except things as they are, and treat the symptoms? Anybody else have any thoughts?

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@robindancer5678 I think a lot of us have asked those same questions of ourselves. Check out this discussion started by @ray666 - Learning Past Cause vs. Quality of Present Life?: https://connect.mayoclinic.org/discussion/learning-past-cause-vs-quality-of-present-life/

REPLY
lashu | @lashu | Jul 30, 2023

Perhaps mentioning that I am already in another Mayo Clinic Connect discussion group is relevant. Having discovered this amazing source of shared experiences and well informed people with common problems to my own, I looked for neuropathy information too. For decades neuropathy in the pads of my feet has made night time sleep difficult. This site promises to be of some aid, I do believe. Thank you for helping to provide this opportunity.

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Amanda Roe | @amandajro | Aug 10, 2023
In reply to @davidpn "Have neuropathy for couple of years but diagnosed with diabetic poly neuropathy this year. Recently I..." + (show)
@davidpn

Have neuropathy for couple of years but diagnosed with diabetic poly neuropathy this year. Recently I had aching pain in my right leg from ankle to top of thigh. Lasted two days, kept me up all night and was gone on third day. My neurologist was a bit confused by this and didn’t think it was neuropathy related. Her first reaction was perhaps inflammation (no swelling or redness) or if I thought if it was skin or nerve related. I responded how can I tell? Two weeks previously I had pain all day and night on bottom of left foot. She thought it may have migrated to right leg but caused by what? I’m waiting for her second response.

Has any one experienced something like this. If so, neuropathy or something else? I had a covid shot right before the left foot pain. Has anyone had a reaction from a covid shot? Thanks.

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Hello @davidpn. I noticed your post from last month and wanted to move it into the welcome discussion for neuropathy. You can find it here:
- Living with Neuropathy - Welcome to the group: https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

I am wondering if you have had more of the same kind of pain since your original post and if you've found out anything more/new to help understand what may be causing your symptoms?

REPLY
1 reply
davidpn | @davidpn | Aug 10, 2023
In reply to @amandajro "Hello @davidpn. I noticed your post from last month and wanted to move it into the..." + (show)
@amandajro

Hello @davidpn. I noticed your post from last month and wanted to move it into the welcome discussion for neuropathy. You can find it here:
- Living with Neuropathy - Welcome to the group: https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

I am wondering if you have had more of the same kind of pain since your original post and if you've found out anything more/new to help understand what may be causing your symptoms?

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Hi Amanda,

No additional pain like what I mentioned or any related explanation. Next appointment with neurologist is in early September. Hope to find out more then.

Thanks.

REPLY
lashu | @lashu | Aug 12, 2023

I have neuropathy in both feet for thirty years. Every test available for this has been taken, they find nothing to be the cause. Gabapentin has been the only medicine prescribed. It is not very effective, maybe forty percent of the time it helps. Foods that are bad for diabetics sometimes aggravate this condition. Anti-inflammatories sometimes help a bit but I am reluctant to take them (ibuprofen) too often. Any suggestions would be appreciated. The neuropathy occurs at night when I try to go to sleep. On rare occasions it occurs in the evening when I'm watching tv. On these occasions I think rich foods may be causal.

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3 replies
lashu | @lashu | Aug 12, 2023
In reply to @lashu "I have neuropathy in both feet for thirty years. Every test available for this has been..." + (show)
@lashu

I have neuropathy in both feet for thirty years. Every test available for this has been taken, they find nothing to be the cause. Gabapentin has been the only medicine prescribed. It is not very effective, maybe forty percent of the time it helps. Foods that are bad for diabetics sometimes aggravate this condition. Anti-inflammatories sometimes help a bit but I am reluctant to take them (ibuprofen) too often. Any suggestions would be appreciated. The neuropathy occurs at night when I try to go to sleep. On rare occasions it occurs in the evening when I'm watching tv. On these occasions I think rich foods may be causal.

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My apology: I have posted this issue twice in a short period of time.

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Mentor
John, Volunteer Mentor | @johnbishop | Aug 12, 2023
In reply to @lashu "I have neuropathy in both feet for thirty years. Every test available for this has been..." + (show)
@lashu

I have neuropathy in both feet for thirty years. Every test available for this has been taken, they find nothing to be the cause. Gabapentin has been the only medicine prescribed. It is not very effective, maybe forty percent of the time it helps. Foods that are bad for diabetics sometimes aggravate this condition. Anti-inflammatories sometimes help a bit but I am reluctant to take them (ibuprofen) too often. Any suggestions would be appreciated. The neuropathy occurs at night when I try to go to sleep. On rare occasions it occurs in the evening when I'm watching tv. On these occasions I think rich foods may be causal.

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Hi @lashu, Sorry to hear you haven't found much for effective relief for your neuropathy. You mentioned it occurs at night when you are trying to go to sleep. Have you seen this discussion?
--- Neuropathy Pain at Night: What helps?: https://connect.mayoclinic.org/discussion/night-pain-2/

REPLY
rickahight | @rickahight | Aug 12, 2023

After electrical stimulation test, Diagnosed with no peripheral neuropathy but have many peripheral neuropathy symptoms. Toes painful, top of feet painful and numbness now moving up lower shins. Can still drive. Talk to neurologist regarding test results Wednesday

REPLY
2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Aug 12, 2023
In reply to @rickahight "After electrical stimulation test, Diagnosed with no peripheral neuropathy but have many peripheral neuropathy symptoms. Toes..." + (show)
@rickahight

After electrical stimulation test, Diagnosed with no peripheral neuropathy but have many peripheral neuropathy symptoms. Toes painful, top of feet painful and numbness now moving up lower shins. Can still drive. Talk to neurologist regarding test results Wednesday

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Hello @rickahight, Welcome to Connect. You are not alone with the neuropathy pain and hopefully you will get some answers Wednesday when you go over the test results with the neurologist. You might want to write down a list of any questions or concerns you have so that you can get some answers. The Neuropathy Commons website is a really good source for neuropathy information and I thought you might find the page on the nerve conduction test helpful:
--- Electromyography and Nerve Conduction Studies: https://neuropathycommons.org/neuropathy/diagnosing-peripheral/electromyography-and-nerve-conduction-studies.

How long have you had the neuropathy symptoms?

REPLY
stallen | @stallen | Aug 13, 2023
In reply to @rickahight "After electrical stimulation test, Diagnosed with no peripheral neuropathy but have many peripheral neuropathy symptoms. Toes..." + (show)
@rickahight

After electrical stimulation test, Diagnosed with no peripheral neuropathy but have many peripheral neuropathy symptoms. Toes painful, top of feet painful and numbness now moving up lower shins. Can still drive. Talk to neurologist regarding test results Wednesday

Jump to this post

Hopefully Wednesday you’ll learn more from the neurologist. The nerve conduction study you had done only detects large fiber neuropathy…it does not detect small fiber neuropathy. It takes other tests to detect small fiber neuropathy…to include a skin biopsy. Your description of symptoms certainly sounds like neuropathy. Ask your neurologist about small fiber neuropathy and if you could have it. Best wishes for you.

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