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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.

26sabrina | @26sabrina | Dec 9, 2022
In reply to @danawyn "Have you been tested for CIDP?" + (show)
@danawyn

Have you been tested for CIDP?

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What is CIDP? Is it a blood test?

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1 reply
patsydell | @patsydell | Dec 9, 2022
In reply to @feetnumb "is anyone trying to massage using the device such as https://www.carpalrx.com ?" + (show)
@feetnumb

is anyone trying to massage using the device such as https://www.carpalrx.com ?

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I purchased a foot massage on Amazon called Medcursor.You might want to try it …
it feels good at the time you’re using it. I can’t honestly say I use it every day consistently so that I can give you a review on the benefits.

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26sabrina | @26sabrina | Dec 9, 2022
In reply to @johnbishop "Hello @26sabrina and @danawyn, I would like to welcome you both to Connect. One of the..." + (show)
@johnbishop

Hello @26sabrina and @danawyn, I would like to welcome you both to Connect. One of the great things about Connect is that we can share our health journey experiences with others and also learn from each other what has helped.

@26sabrina, I'm sorry to hear the burning pain is getting worse but it's good to hear you are still searching for something that helps. The Foundation for Peripheral Neuropathy has a list of different treatments including complementary and alternative treatments that you might want to take a look at here -- https://www.foundationforpn.org/treatments/.

@danawyn, It sounds like you also have a form of neuropathy. Do you have CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)?

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I've never heard of this. Is this something that my doctor should be checking and would it mean a difference in approach to treatment?

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ellbee | @ellbee | Dec 9, 2022
In reply to @johnbishop "Welcome @ellbee, I've carried that pre-diabetic tag with me for 20+ years also and have recently..." + (show)
@johnbishop

Welcome @ellbee, I've carried that pre-diabetic tag with me for 20+ years also and have recently thought it may have something to do with my idiopathic small fiber peripheral neuropathy. So, I'm working on getting out of the pre-diabetes diagnosis after doing a little reading on the metabolic syndrome which fits most people in the pre-diabetes category.

-- The Metabolic Syndrome and Neuropathy: Therapeutic Challenges and Opportunities: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3881591/

Do you have pain with your neuropathy symptoms?

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Yes I do have pain that goes and comes with my neuropathy. I have tried to understand what actions cause the difference but I'm still not sure. Leaving off sugar may make some difference but I' not sure. Sometimes the pain is so bad that I cannot sleep and other times the pain doesn't bother me at all, however, I do experience some numbness all the time.

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Mentor
John, Volunteer Mentor | @johnbishop | Dec 9, 2022
In reply to @lecowing "The NIH article is very informative. Will this change your treatment routine, if so how?" + (show)
@lecowing

The NIH article is very informative. Will this change your treatment routine, if so how?

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@lecowing, I found the article after looking deeper into possible causes for my neuropathy and other things I could work on to help. That along with learning more about low carb healthy fat eating along with intermittent fasting was when I started thinking there was a relationship between the metabolic syndrome and neuropathy. There is another discussion on the low carb eating and why here:

-- Low-carb healthy fat living. Intermittent fasting. What’s your why?
https://connect.mayoclinic.org/discussion/low-carb-healthy-fat-living-intermittent-fasting-whats-your-why/

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Mentor
John, Volunteer Mentor | @johnbishop | Dec 9, 2022
In reply to @ellbee "Yes I do have pain that goes and comes with my neuropathy. I have tried to..." + (show)
@ellbee

Yes I do have pain that goes and comes with my neuropathy. I have tried to understand what actions cause the difference but I'm still not sure. Leaving off sugar may make some difference but I' not sure. Sometimes the pain is so bad that I cannot sleep and other times the pain doesn't bother me at all, however, I do experience some numbness all the time.

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Sugar is definitely something to get rid of when you have neuropathy. I can limit it but haven't quite been able to kick the habit 🙃

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bustrbrwn22 | @bustrbrwn22 | Dec 9, 2022
In reply to @mddeschamp7 "Growing neuropathy in my feet/lower legs since 2011, after spinal fusion in the lower lumbar region...." + (show)
@mddeschamp7

Growing neuropathy in my feet/lower legs since 2011, after spinal fusion in the lower lumbar region. I'm a 72-year-old female, now retired. My pain and tingling are worse at night. I've been told nothing can be done for neuropathy, but I have been prescribed gabapentin. I take 600 with 2 Tylenol for arthritis before bedtime nightly. I also have some sciatica issues and knee and neck pain. Most nights I sleep ok with 2 trips to the bathroom (usually). I can usually return to sleep after these trips 🙂

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@mddeschamp7 you are a strong person to deal with so much pain with the small amount of meds you take!

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Mentor
John, Volunteer Mentor | @johnbishop | Dec 9, 2022
In reply to @26sabrina "I've never heard of this. Is this something that my doctor should be checking and would..." + (show)
@26sabrina

I've never heard of this. Is this something that my doctor should be checking and would it mean a difference in approach to treatment?

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Do you mean CIDP that @danawyn mentioned? That would be something you could discuss with your doctor if you think your symptoms are the same. Here's more information on the condition.

-- Chronic Inflammatory Demyelinating Polyradiculoneuropathy:
https://www.hopkinsmedicine.org/health/conditions-and-diseases/chronic-inflammatory-demyelinating-polyradiculoneuropathy

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26sabrina | @26sabrina | Dec 9, 2022
In reply to @johnbishop "https://youtu.be/WJVVYk1sg0I" + (show)
@johnbishop

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Ok, after seeing this video, I definitely don't have CIDP but now a question what is GBS?

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