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 | Dec 22, 2019
In reply to @chandyjohn1 "I am Chandy John, over 82 years old, an Indian living in Bangalore. I have been..." + (show)
@chandyjohn1

I am Chandy John, over 82 years old, an Indian living in Bangalore. I have been suffering from Type 2 Diabetes for over 5 years and now have Diabetic Neuropathy, which makes the soles of both feet numb and tingling with pain. I use Pregabalin 125 mg once a day, which helps reduce the pain only to some degree. I also use Compression Stockings along with a soft-cushioned shoe, which also helps in making the pain manageable.

I am looking for a remedy that will cure me completely of the effects of Diabetic Neuropathy. Any tips or suggestions will be most welcome.

Jump to this post

Hi @chandyjohn1, I think we are all looking for the same cure for neuropathy. How are you doing on your diabetes? Have you made any lifestyle changes to help with the diabetes?

Here's an article in Medical News Today that might be helpful - Is it possible to reverse diabetic neuropathy?
-- https://www.medicalnewstoday.com/articles/317923.php

@lyssia and @abd123 may be able to share what has helped them.

REPLY
catro | @catro | Dec 26, 2019

My name is Charlie. I go by Catro. I am almost 82 and have had PN more than 10 years, but recently it has gotten worse having moved from my feet up my legs and into my hands and arms. The mystery is why I can feel fine during the time I am awake but about 2 hours after I go to sleep I wake up with my feet, legs and hands burning. This sleep wake cycle goes on until I finally get up and move around. It gradually subsides and I have a good day with little or no pain. Then I go to bed and it starts all over again. Does anyone experience this? Does anyone know what is going on in my body while I am asleep that is doing this to me. I’ have been off of sugar, alcohol, and anything high glycemic for several months.

REPLY
4 replies
Mentor
John, Volunteer Mentor | @johnbishop | Dec 26, 2019
In reply to @catro "My name is Charlie. I go by Catro. I am almost 82 and have had PN..." + (show)
@catro

My name is Charlie. I go by Catro. I am almost 82 and have had PN more than 10 years, but recently it has gotten worse having moved from my feet up my legs and into my hands and arms. The mystery is why I can feel fine during the time I am awake but about 2 hours after I go to sleep I wake up with my feet, legs and hands burning. This sleep wake cycle goes on until I finally get up and move around. It gradually subsides and I have a good day with little or no pain. Then I go to bed and it starts all over again. Does anyone experience this? Does anyone know what is going on in my body while I am asleep that is doing this to me. I’ have been off of sugar, alcohol, and anything high glycemic for several months.

Jump to this post

Hello @catro, Welcome to Connect. I'm 76 and have had PN for 20+ years. I haven't experienced the burning when sleeping but have been woken up by the sharp pins and needles and tingling in the arms caused by laying on my arm/hand while sleeping on my side which I think pinches a nerve. Mayo Clinic lists some causes for burning feet here: https://www.mayoclinic.org/symptoms/burning-feet/basics/causes/sym-20050809.

Just curious if you have asked your doctor why you can feel OK during the day but wake up at night with the symptoms you describe?

REPLY
constitution | @constitution | Dec 26, 2019
In reply to @catro "My name is Charlie. I go by Catro. I am almost 82 and have had PN..." + (show)
@catro

My name is Charlie. I go by Catro. I am almost 82 and have had PN more than 10 years, but recently it has gotten worse having moved from my feet up my legs and into my hands and arms. The mystery is why I can feel fine during the time I am awake but about 2 hours after I go to sleep I wake up with my feet, legs and hands burning. This sleep wake cycle goes on until I finally get up and move around. It gradually subsides and I have a good day with little or no pain. Then I go to bed and it starts all over again. Does anyone experience this? Does anyone know what is going on in my body while I am asleep that is doing this to me. I’ have been off of sugar, alcohol, and anything high glycemic for several months.

Jump to this post

Sir: My age and symptoms are similar, although only just roughly 2.5 years since beginning. As nerve damage is not easily repairable I've done some thinking about taking the brain, which rationalizes the pain experienced, OUT of the process. That has led me to psychotherapy (or CBT, cognitive behavioral therapy) and I have discovered an article which has helped me a lot. There is not an internet hyperlink to the article so I am inserting a couple of the article identifier numbers as follows: PMCID: PMC3000182
PMID: 21152145. I suggest you Google one, or other number, or both.
I hope you can find this article this way, If not, I will try to cut and paste it to you via some other means

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Dec 26, 2019
In reply to @constitution "Sir: My age and symptoms are similar, although only just roughly 2.5 years since beginning. As..." + (show)
@constitution

Sir: My age and symptoms are similar, although only just roughly 2.5 years since beginning. As nerve damage is not easily repairable I've done some thinking about taking the brain, which rationalizes the pain experienced, OUT of the process. That has led me to psychotherapy (or CBT, cognitive behavioral therapy) and I have discovered an article which has helped me a lot. There is not an internet hyperlink to the article so I am inserting a couple of the article identifier numbers as follows: PMCID: PMC3000182
PMID: 21152145. I suggest you Google one, or other number, or both.
I hope you can find this article this way, If not, I will try to cut and paste it to you via some other means

Jump to this post

@constitution thank you for the article identifiers - here is the links you mentioned for @catro.

Psychotherapeutic Approaches in the Treatment of Pain
-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3000182/

Psychotherapeutic approaches in the treatment of pain.
-- https://www.ncbi.nlm.nih.gov/pubmed/21152145/

REPLY
1 reply
Mentor
Jim, Volunteer Mentor | @jimhd | Dec 26, 2019
In reply to @catro "My name is Charlie. I go by Catro. I am almost 82 and have had PN..." + (show)
@catro

My name is Charlie. I go by Catro. I am almost 82 and have had PN more than 10 years, but recently it has gotten worse having moved from my feet up my legs and into my hands and arms. The mystery is why I can feel fine during the time I am awake but about 2 hours after I go to sleep I wake up with my feet, legs and hands burning. This sleep wake cycle goes on until I finally get up and move around. It gradually subsides and I have a good day with little or no pain. Then I go to bed and it starts all over again. Does anyone experience this? Does anyone know what is going on in my body while I am asleep that is doing this to me. I’ have been off of sugar, alcohol, and anything high glycemic for several months.

Jump to this post

@catro

I usually have pain in my feet which a spinal cord stimulator implant and a few medications keep the pain down to a tolerable level, but as soon as I lie down the pain instantly jumps to 6-8. I don't know why it happens. The same thing is true when I put my feet up in my recliner. But it hurts when I sit up with my feet on the floor, too.

I had 6 sessions with a pain therapist and I use a couple of things she told me. But otherwise it was a waste of time, at least it was for me.

I have this question on my list of things to ask my doctors about.

Jim

REPLY
iceblue | @iceblue | Dec 26, 2019

I had this article delivered to my inbox from Medscape today. Hopefully the link allows others to read it. It's called 'A Clinician's Approach to Peripheral Neuropathy'

https://www.medscape.com/viewarticle/920379_1
REPLY
2 replies
Mentor
Chris Trout, Volunteer Mentor | @artscaping | Dec 26, 2019
In reply to @iceblue "I had this article delivered to my inbox from Medscape today. Hopefully the link allows others..." + (show)
@iceblue

I had this article delivered to my inbox from Medscape today. Hopefully the link allows others to read it. It's called 'A Clinician's Approach to Peripheral Neuropathy'

https://www.medscape.com/viewarticle/920379_1

Jump to this post

HI there @iceblue. I hope you had joy and laughter yesterday a day full of good memories. Thanks for the Medscape link. It went right to the article. Very thorough and a challenge to absorb. Did you find it definitive for you? If so, in what way. Be happy...be safe. Chris

REPLY
1 reply
constitution | @constitution | Dec 26, 2019
In reply to @johnbishop "@constitution thank you for the article identifiers - here is the links you mentioned for @catro...." + (show)
@johnbishop

@constitution thank you for the article identifiers - here is the links you mentioned for @catro.

Psychotherapeutic Approaches in the Treatment of Pain
-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3000182/

Psychotherapeutic approaches in the treatment of pain.
-- https://www.ncbi.nlm.nih.gov/pubmed/21152145/

Jump to this post

John, Thx for finding the links. Hope they are helpful.

REPLY
marazion | @marazion | Dec 27, 2019
In reply to @iceblue "I had this article delivered to my inbox from Medscape today. Hopefully the link allows others..." + (show)
@iceblue

I had this article delivered to my inbox from Medscape today. Hopefully the link allows others to read it. It's called 'A Clinician's Approach to Peripheral Neuropathy'

https://www.medscape.com/viewarticle/920379_1

Jump to this post

Wonderfully informative article that strained my knowledge of medical terminology (gained while working in the pharmaceutical industry) to the breaking point! For me the comments on lumbar sacral radiculopathy as a co-morbidity were helpful. If I understand it correctly, nerve entrapment (and stenosis?) can cause symptoms that can overlap with or even be confused with the symptoms of peripheral neuropathy. This makes differential diagnosis (including testing). VERY important.

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.