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.

@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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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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Have neuropathy in both legs and feet since DIABETES = worsening now that I am having tests for HIATAL HERNIA and am only eating very small portions blended until the second test. (BARIUM SWALLOW done on the way to the ENDOSCOPY in two weeks) DIABETES on insulin for 28 years. Feet and knees keep crackling and giving out. FASTING FOR MEDICAL TESTS MAKE IT WORSE. I appreciate any suggestions. Margaret O

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@margaretob

Have neuropathy in both legs and feet since DIABETES = worsening now that I am having tests for HIATAL HERNIA and am only eating very small portions blended until the second test. (BARIUM SWALLOW done on the way to the ENDOSCOPY in two weeks) DIABETES on insulin for 28 years. Feet and knees keep crackling and giving out. FASTING FOR MEDICAL TESTS MAKE IT WORSE. I appreciate any suggestions. Margaret O

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Margaret @margaretob, I'm so sorry to hear that your diabetes is worsening due things you are not able to control. I've been in the pre-diabetes category most of my life and understand how difficult it must be for you. I'm not sure if this will provide anything you don't already know but thought it might be a good source for reading and seeing if there is something that might help.
--- https://www.foundationforpn.org/living-well/lifestyle/nutrition/

Also, the Foundation for Peripheral Neuropathy has a webinar on diabetic neuropathy that might be helpful for learning more - https://youtu.be/WAzI0mK4cyk.

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@donaldblair

loosing use of my fingers

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Hello @donaldblair, Welcome to Connect. I'm sure you are not alone with the feeling of losing the use of your fingers. Have you been diagnosed with a type of neuropathy or carpal tunnel syndrome in your hands and fingers?

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@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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@lashu I just read your Comment and I have a question. When your neuropathy starts what does it feel?

When you are watching TV at night do your legs feel like you have bugs running up down and all around them deep under your skin? If you do, do you feel better if you move your legs briefly?

Just a thought, could you be experiencing restless leg syndrome?

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My foot neuropathy has been a problem for at least thirty years. It occurs almost only when I go to bed at night, sometimes it takes an hour before it sets in. Your description of restless leg syndrome has been considered and eliminated as part of this. However, recently I have felt that "bug" sensitivity in my lower legs, it is a new event.

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My name is Linda. I have had neuropathy for about a year. Of course, like everyone else, I hate it. I guess what I would like to know is whether there is anything that helps the tingling and discomfort. Also, does it cause leg cramps? I have a lot of those.

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@llevy0081

My name is Linda. I have had neuropathy for about a year. Of course, like everyone else, I hate it. I guess what I would like to know is whether there is anything that helps the tingling and discomfort. Also, does it cause leg cramps? I have a lot of those.

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I have had neuropathy for about a year. Is there anything that helps the tingling and numbness. It's so hard to walk. I am so tired of watching these "short" videos that only turn out to be an advertisement for selling something.

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