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.

Profile picture for libbye @libbye

Hi! My name is Libby and my husband is suffering from peripheral neuropathy mainly in his lower legs and feet. He doesn't have an accurate diagnosis. The doctors at UK Medical Center thought maybe it was CIDP but are not sure because the EMG test did not confer.
Anyway, he can not stand to sit for more than a few minutes before the pain in his behind is terrible. We have a 12 hour drive to Mayo in October. He will be lying down in a transport vehicle most of that time. Can anyone give me an idea what I could do to lessen the pain when sitting. He has lost most of his core strength. We are working on that before we come to Mayo, but not much help so far.

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I would try a circular, hole in centre, inflatable cushion. I works for me. Good luck!

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There lately seems to be movement in the pharma research community looking for alternative pain medication as a replacement for opiates. Here is an article that may be of interest https://www.drugabuse.gov/news-events/nida-notes/2019/02/promising-alternative-to-opioid-pain-medications

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I am age 53, and I am experiencing more issues that are nerve related.
Is there a disease, disorder, syndrome, etc. that is more specific than just Neuropathy?
FIRST nerve issue was Morton's Neuroma,
SECOND degenerative disk disease, was low back and middle back, now in my neck.
THIRD, ( this is now since post-covid 19) Numbness, tingling, etc... in face, hands, foot, down arm. some stay bothersome all the time, whereas other times comes and goes.
Trying to connect any dots that might are being over looked by the many different specialists.

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Profile picture for mothertheresa3 @mothertheresa3

I am age 53, and I am experiencing more issues that are nerve related.
Is there a disease, disorder, syndrome, etc. that is more specific than just Neuropathy?
FIRST nerve issue was Morton's Neuroma,
SECOND degenerative disk disease, was low back and middle back, now in my neck.
THIRD, ( this is now since post-covid 19) Numbness, tingling, etc... in face, hands, foot, down arm. some stay bothersome all the time, whereas other times comes and goes.
Trying to connect any dots that might are being over looked by the many different specialists.

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Sorry to hear you're going through all this. I'm about the same age. I've been blessed to have been healthy and active until 3 years ago, and I'm chalking it up to menopause - my body does not feel like itself. I think there's got to be some hormonal imbalance or something. I had bilateral adhesive capsulitis in both shoulders within a year of menopause. And now some mysterious nerve damage in foot after breaking my toe last summer....still trying to find a doc who can figure it out.

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Profile picture for mothertheresa3 @mothertheresa3

I am age 53, and I am experiencing more issues that are nerve related.
Is there a disease, disorder, syndrome, etc. that is more specific than just Neuropathy?
FIRST nerve issue was Morton's Neuroma,
SECOND degenerative disk disease, was low back and middle back, now in my neck.
THIRD, ( this is now since post-covid 19) Numbness, tingling, etc... in face, hands, foot, down arm. some stay bothersome all the time, whereas other times comes and goes.
Trying to connect any dots that might are being over looked by the many different specialists.

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@mothertheresa3 -- It's good to learn as much as you can about your health conditions. There is a good overview of neuropathy on the Neuropathy Commons website here that you might find helpful for connecting some of the dots: https://neuropathycommons.org/neuropathy/neuropathy-overview

I also have degenerative disk disease and arthritis and I'm sure that plays a part as the nerves run through the spinal cord and as they can become compressed and cause all sorts of nerve related issues, but that's just my non medical opinion.

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Profile picture for John, Volunteer Mentor @johnbishop

@mothertheresa3 -- It's good to learn as much as you can about your health conditions. There is a good overview of neuropathy on the Neuropathy Commons website here that you might find helpful for connecting some of the dots: https://neuropathycommons.org/neuropathy/neuropathy-overview

I also have degenerative disk disease and arthritis and I'm sure that plays a part as the nerves run through the spinal cord and as they can become compressed and cause all sorts of nerve related issues, but that's just my non medical opinion.

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VESTIBULAR NEURITIS:

Wondering now, if I need to add this to my nerve problem list 😕

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Profile picture for mothertheresa3 @mothertheresa3

VESTIBULAR NEURITIS:

Wondering now, if I need to add this to my nerve problem list 😕

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Not sure but there is discussion posted by another member a year ago but she has not posted since -- HELP! New symptoms everyday, Vestibular Neuritis,nerve pain, Ear pain? - https://connect.mayoclinic.org/discussion/help-new-symptoms-everyday-vestibular-neuritisnerve-pain-ear-pain/

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Has anyone heard of or used the herb Skullcap for PN? Seems it’s a very commonly used treatment for many things. It’s used different ways eg tea, tincture etc. available atAmazon, Chinese herb shops, etc.

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The consensus suggest I have long covid. I say consensus because I test negative for anti bodies. My symptoms are as follows. Horrible skin neuropathy pretty much all over my body but worst spots are front of thighs and chest, Dizzy, low blood pressure, weight loss, taste is off, Fatigue, difficulty focusing, sometimes short of breath. I was diabetic and had high blood pressure but they are gone because I lost 100 lbs. I stopped taking all medications for these conditions. Almost a year now, I have tried everything there is too try I think. Nothing seems to help. I don't think there are doctors who know how to help with this so I try to find things too help me. Very difficult time for me. I believe this was a genetically engineered virus, it has kicked my butt badly.

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Profile picture for longhauler @longhauler

The consensus suggest I have long covid. I say consensus because I test negative for anti bodies. My symptoms are as follows. Horrible skin neuropathy pretty much all over my body but worst spots are front of thighs and chest, Dizzy, low blood pressure, weight loss, taste is off, Fatigue, difficulty focusing, sometimes short of breath. I was diabetic and had high blood pressure but they are gone because I lost 100 lbs. I stopped taking all medications for these conditions. Almost a year now, I have tried everything there is too try I think. Nothing seems to help. I don't think there are doctors who know how to help with this so I try to find things too help me. Very difficult time for me. I believe this was a genetically engineered virus, it has kicked my butt badly.

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Hello @longhauler, Welcome to Connect. I'm not quite sure I would say consensus just because you test negative for antibodies. You list a lot of different symptoms and a dramatic weight loss but you didn't mention what the span of time was. Have you seen a neurologist or been tested for nerve damage?

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