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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 8, 2022

I am 73 and have been dealing with neuropathy in my feet for 5 years. It started with just a few left toes. Now really uncomfortable burning almost all the time in both feet. I am beginning to feel some tingling and numbness in my finger tips.
I have tried many meds. Right now I am using Voltaren gel, Robinorol and Pregablin. I am functioning.

REPLY
1 reply
danawyn | @danawyn | Dec 8, 2022
In reply to @26sabrina "I am 73 and have been dealing with neuropathy in my feet for 5 years. It..." + (show)
@26sabrina

I am 73 and have been dealing with neuropathy in my feet for 5 years. It started with just a few left toes. Now really uncomfortable burning almost all the time in both feet. I am beginning to feel some tingling and numbness in my finger tips.
I have tried many meds. Right now I am using Voltaren gel, Robinorol and Pregablin. I am functioning.

Jump to this post

Have you been tested for CIDP?

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Dec 8, 2022

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)?

REPLY
3 replies
tuliovalley56 | @tuliovalley56 | Dec 8, 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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thanks for the welcome.
thanks for the referral to the foundation for peripheral Neuropathy.
Regarding the CIDP I don't know nothing about this. .but immediately I'll research about this. Thanks.

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patsydell | @patsydell | Dec 8, 2022
In reply to @luckyd2002 "Amitriptyline is older but effective medication for anxiety and depression at higher dose may be generic..." + (show)
@luckyd2002

Amitriptyline is older but effective medication for anxiety and depression at higher dose may be generic name also?
Tizanadine is another medication that helps reduce and deal with neuropathy symptoms.
Also for my feet the biweekly pedicure and massage comforting and relaxing and the foot roller.

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What milligram is your prescription? I

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danawyn | @danawyn | Dec 8, 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)?

Jump to this post

Yes, I do. I have been receiving IvIG treatment since 2015 and am faring well. Thank you. The fact that her neuropathy has moved to her hands (and the burning sensation) is what peaked my interest. I am the NYC Liaison for the GBS/CIDP Foundation.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Dec 9, 2022
In reply to @danawyn "Yes, I do. I have been receiving IvIG treatment since 2015 and am faring well. Thank..." + (show)
@danawyn

Yes, I do. I have been receiving IvIG treatment since 2015 and am faring well. Thank you. The fact that her neuropathy has moved to her hands (and the burning sensation) is what peaked my interest. I am the NYC Liaison for the GBS/CIDP Foundation.

Jump to this post

Good to hear you are faring well and great to hear you have a connection with the GBS/CIDP Foundation for support. There are some other CIDP discussions you might find helpful.

-- CIDP and concerns about treatment risk factors
https://connect.mayoclinic.org/discussion/cidp/
-- Chronic Inflammatory Demyelinating Polyneuropathy and IVIG reactions
https://connect.mayoclinic.org/discussion/cidp-having-ivig-reactions/
-- CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)
https://connect.mayoclinic.org/discussion/cidp-chronic-inflammatory-demylinating-polyneuropathy/
-- CIDP and the Covid Vaccine
https://connect.mayoclinic.org/discussion/cidp-and-the-covid-vaccine/

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bryano | @bryano | Dec 9, 2022

I'm just joining this group. I've had Type 1 diabetes for 52 years since 1970 at 8 years of age. Started feeling neuropathy in my 20s but it seemed to go away for awhile. In my late 50s it started coming back. I don't feel pain, but just tingling and restless foot syndrome. I've never been diagnosed, but exercise especially running seemed to help it. I still run, but at 61 years of age, I'm unable to run as far and the neuropathy is getting much worse. It mostly affects my sleep. I hope to learn from some other experiences in this group.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Dec 9, 2022
In reply to @bryano "I'm just joining this group. I've had Type 1 diabetes for 52 years since 1970 at..." + (show)
@bryano

I'm just joining this group. I've had Type 1 diabetes for 52 years since 1970 at 8 years of age. Started feeling neuropathy in my 20s but it seemed to go away for awhile. In my late 50s it started coming back. I don't feel pain, but just tingling and restless foot syndrome. I've never been diagnosed, but exercise especially running seemed to help it. I still run, but at 61 years of age, I'm unable to run as far and the neuropathy is getting much worse. It mostly affects my sleep. I hope to learn from some other experiences in this group.

Jump to this post

Hello @bryano, Welcome to Connect. I lost my ability to run long before I turned 60 so kudos for you keeping at it. There are a couple of other discussions you also might find helpful:

-- Is restless leg (RLS) related to seratonin syndrome? Tips for relief?
https://connect.mayoclinic.org/discussion/restless-leg-syndrome-3/
-- Neuropathy: Numbness only, no pain: https://connect.mayoclinic.org/discussion/neuropathy-numbness-only-no-pain/
-- Has anyone tried treatment for diabetic neuropathy ?:
https://connect.mayoclinic.org/discussion/has-anyone-tried-treatment-for-diabetic-neuropathy/

Does your doctor think the neuropathy symptoms are related to your diabetes?

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

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