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.

mistic | @mistic | Aug 26, 2021

Thank you. I’m seeing the doctor on the 30th so I’ll mention it. The worst is at nighttime so my new wake up time is 4 am because I can’t sleep. I take so
Many showers a day because that’s the. Only place I get relief.

REPLY
2 replies
jgraber | @jgraber | Aug 27, 2021
In reply to @mistic "Hi. I’m new…Im 46 years old and am dealing with femoral neuropathy and am in so..." + (show)
@mistic

Hi. I’m new…Im 46 years old and am dealing with femoral neuropathy and am in so much pain. In July, I suffered from mini strokes and actually ended up on life support for 10 days. I developed femoral neuropathy because of the way I was laying so I must have compressed a nerve. I’m taking 900 mg of gabapentin 3x a day. Does it really take up to 6 weeks to begin working? And does it take away the stabbing and sharp pains that feel like I’m being electrocuted?? I can’t live like this, it’s awful! Thanks in advance for any helpful input.

Jump to this post

Hi, Please hang in there and know in time it will get better. Have you connected with a pain clinic? Also, maybe a place like the Mayo Clinic? I don’t think you have adequate pain relief. I’ve been there many times and I’ve felt desperate. I have nerve pain throughout my body and it is horrible. I took gabapentin and low dose tramadol and ibuprofen for 17 years without ever going over the prescribed amount of tramadol, always under the prescribed amount. I had flares of horrible pain but I could keep it under control. It recently spread throughout my body and I was referred to a major pain clinic. They recommended switching from gabapentin to Lyrica and they also recommended other medications like Cymbalta. I was prescribed an anti-depressant when the nerve pain began 20 years ago. I stayed on it for a year and it really helped me feel like I could deal with the pain.

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Aug 27, 2021
In reply to @mistic "Thank you. I’m seeing the doctor on the 30th so I’ll mention it. The worst is..." + (show)
@mistic

Thank you. I’m seeing the doctor on the 30th so I’ll mention it. The worst is at nighttime so my new wake up time is 4 am because I can’t sleep. I take so
Many showers a day because that’s the. Only place I get relief.

Jump to this post

@mistic -- Have you tried any complementary or integrative therapies? The Foundation for Peripheral Neuropathy has some listed here that may provide some relief - https://www.foundationforpn.org/living-well/integrative-therapies/

REPLY
1 reply
mistic | @mistic | Aug 27, 2021
In reply to @johnbishop "@mistic -- Have you tried any complementary or integrative therapies? The Foundation for Peripheral Neuropathy has..." + (show)
@johnbishop

@mistic -- Have you tried any complementary or integrative therapies? The Foundation for Peripheral Neuropathy has some listed here that may provide some relief - https://www.foundationforpn.org/living-well/integrative-therapies/

Jump to this post

Thank you, I will look I to it.

REPLY
mistic | @mistic | Aug 27, 2021
In reply to @jgraber "Hi, Please hang in there and know in time it will get better. Have you connected..." + (show)
@jgraber

Hi, Please hang in there and know in time it will get better. Have you connected with a pain clinic? Also, maybe a place like the Mayo Clinic? I don’t think you have adequate pain relief. I’ve been there many times and I’ve felt desperate. I have nerve pain throughout my body and it is horrible. I took gabapentin and low dose tramadol and ibuprofen for 17 years without ever going over the prescribed amount of tramadol, always under the prescribed amount. I had flares of horrible pain but I could keep it under control. It recently spread throughout my body and I was referred to a major pain clinic. They recommended switching from gabapentin to Lyrica and they also recommended other medications like Cymbalta. I was prescribed an anti-depressant when the nerve pain began 20 years ago. I stayed on it for a year and it really helped me feel like I could deal with the pain.

Jump to this post

I will check
Into pain clinics. I actually recently stopped taking an antidepressant and I’m doing really well without it so I’d like that to continue. I’m hoping that my neuropathy is reversible but only time will tell.

REPLY
Mary Klimek | @brklimeks | Aug 27, 2021
In reply to @mistic "Hi. I’m new…Im 46 years old and am dealing with femoral neuropathy and am in so..." + (show)
@mistic

Hi. I’m new…Im 46 years old and am dealing with femoral neuropathy and am in so much pain. In July, I suffered from mini strokes and actually ended up on life support for 10 days. I developed femoral neuropathy because of the way I was laying so I must have compressed a nerve. I’m taking 900 mg of gabapentin 3x a day. Does it really take up to 6 weeks to begin working? And does it take away the stabbing and sharp pains that feel like I’m being electrocuted?? I can’t live like this, it’s awful! Thanks in advance for any helpful input.

Jump to this post

Be careful with the gabapentin. I too was on 3600 mg which is the top of the recommended dosage. Drink the recommended amount of water. Make sure your doctor (and you) are watching your kidney function via blood work. I now have stage 3 chronic kidney disease probably from pain meds. I had a spinal cord stimulator placed two years ago and it cut my gabapentin in half. I’m sorry you’re suffering from so much pain. I also get that you don’t care about anything else when you’re consumed by pain. Good luck.

REPLY
Mary Klimek | @brklimeks | Aug 27, 2021
In reply to @johnbishop "@brklimeks, I'm sorry to hear that you also have stage 3 chronic kidney disease. You might..." + (show)
@johnbishop

@brklimeks, I'm sorry to hear that you also have stage 3 chronic kidney disease. You might find the following discussions helpful.

-- Confused About Diet for Stage 3 or 4 Chronic Kidney Disease (CKD): https://connect.mayoclinic.org/discussion/confused-about-stage-3-ckd-diet/
-- Just diagnosed Stage 3 CKD: Should I be referred to a nephrologist?: https://connect.mayoclinic.org/discussion/just-diagnosed-with-stage-3-ckd/
-- Chronic Kidney Disease (CKD): How do I stop progression?: https://connect.mayoclinic.org/discussion/ckd/

I think a lot of us feel like a hamster on a wheel at times. It's understandable to feel down about it. You mentioned you were doing well with healthy eating before you were diagnosed. Are you able to get back to healthy eating?

Jump to this post

My post was lost. Dang. I spilled my guts. Anyway, bottom line is that I’m at my daughters cottage for the summer. My son-in-law is an excellent cook. I eat what I see. Not walking much until after foot surgery next month. Tons of medical diagnoses. So yes, I’ll get back to healthy eating after Labor Day.

REPLY
mfj | @mfj | Aug 27, 2021

Has anyone heard of albation for neuropathy? Does it work? Is there any REAL help out there?

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Aug 27, 2021
In reply to @mfj "Has anyone heard of albation for neuropathy? Does it work? Is there any REAL help out..." + (show)
@mfj

Has anyone heard of albation for neuropathy? Does it work? Is there any REAL help out there?

Jump to this post

@mjf - I've heard of ablation for neuropathy but haven't read much about it. Here is a discussion from 2017 that discusses the topic and may answer some questions you have:
-- Experience with Radio Frequency Ablation procedures?: https://connect.mayoclinic.org/discussion/experience-with-radio-frequency-ablation-procedures/

Mayo Clinic has some information here - Radiofrequency neurotomy: https://www.mayoclinic.org/tests-procedures/radiofrequency-neurotomy/about/pac-20394931

Have you discussed it with your doctor or care team? Wondering if they had any thoughts on if it would help.

REPLY
raebaby | @raebaby | Aug 27, 2021
In reply to @mistic "Thank you. I’m seeing the doctor on the 30th so I’ll mention it. The worst is..." + (show)
@mistic

Thank you. I’m seeing the doctor on the 30th so I’ll mention it. The worst is at nighttime so my new wake up time is 4 am because I can’t sleep. I take so
Many showers a day because that’s the. Only place I get relief.

Jump to this post

When my husband with Parkinson's had terrible pain in his gut he would take a cold shower and it shocked him out of it.

REPLY
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