Looking to connect with people who have non-diabetic neuropathy

Posted by Ann broussard @user_ch98d0b5c, Aug 6, 2018

Would. Like to find people with this issue

Interested in more discussions like this? Go to the Neuropathy Support Group.

My neuropathy caused softening of bones in my lower leg causing a series of fractures in my foot, ankle and tibia. Five years ago it got to the point that it wasn't fixable! I had a BK Amp. I'm concerned about my other leg as it has creeping neuropathy too. I still have lightning bolts of pain ( sharp and burning). Gabapentin doesn't fixit.

REPLY

Ed, I wish you the best. I’ll check back in after I’ve taken the R-alpha. Let us know if you notice any difference from the synthetic version. Blessings 🙏🏼😇💙

REPLY

Hi, my name is Mary and I have been dealing with neuropathy for a few years. I take 400 mg of Gabapetin 3Xday. I also have a bottle of 100mg that I had left over from a different dosage that I use 1 at a time if I am really struggling. I have had to give so many clothes away because they hurt. If my neuropathy is acting up, I find a hot bubble bath or bath with salts. That seems to soothe things down. I had a full length Artic fox coat that I finally am getting it repurposed into a throw. This was the only surface I could rest my legs on. This neuropathy thing can drive one mad! It is so relentless and so demanding of one’s attention. I am using a mink coat for my legs now and it isn’t as good. The fox is long and breathes where the fur of the mink is short. If you have a coat or want to pick one up to repurpose, I could give you advice on what works best. Have a great Labor Day Weekend!

REPLY
@gshfmb

Ed, I wish you the best. I’ll check back in after I’ve taken the R-alpha. Let us know if you notice any difference from the synthetic version. Blessings 🙏🏼😇💙

Jump to this post

gshfmb - will do, let's see if it helps and I'll let you know, remaining hopeful - Ed

REPLY
@carolann1952

My neuropathy caused softening of bones in my lower leg causing a series of fractures in my foot, ankle and tibia. Five years ago it got to the point that it wasn't fixable! I had a BK Amp. I'm concerned about my other leg as it has creeping neuropathy too. I still have lightning bolts of pain ( sharp and burning). Gabapentin doesn't fixit.

Jump to this post

I'm so sorry you, too, are dealing with neuropathy. It is truly maddening and so painful.

I take 300mg Gabapentin nightly, but I find that it doesn't help much. I've added CBD+THC gummies as needed (25mg CBD + 5mg THC).

REPLY
@txsongbird

I'm so sorry you, too, are dealing with neuropathy. It is truly maddening and so painful.

I take 300mg Gabapentin nightly, but I find that it doesn't help much. I've added CBD+THC gummies as needed (25mg CBD + 5mg THC).

Jump to this post

I take clonazepam 1mg each night and sleep 7-8 hours a night.

REPLY
@carolann1952

My neuropathy caused softening of bones in my lower leg causing a series of fractures in my foot, ankle and tibia. Five years ago it got to the point that it wasn't fixable! I had a BK Amp. I'm concerned about my other leg as it has creeping neuropathy too. I still have lightning bolts of pain ( sharp and burning). Gabapentin doesn't fixit.

Jump to this post

This caught my attention. My pain started with fractures in my heels! I was walking two miles very briskly most mornings. I've never heard of neuropathy softening bones.. Who told you that it could cause softening of the bones? Fascinating idea.

REPLY
@julbpat

This caught my attention. My pain started with fractures in my heels! I was walking two miles very briskly most mornings. I've never heard of neuropathy softening bones.. Who told you that it could cause softening of the bones? Fascinating idea.

Jump to this post

I was working full-time as a nurse and walking 3 miles every day. Right leg so numb I didn't realize I'd fractured my big toe. I was told that my neuropathy caused decreased blood flow to bones. I certainly found that to be true when I was trying to heal fractures. I did hyperbaric oxygen at wound care after BK Amp. I have burning pain right lower leg. I've been told nothing improves this like if one has other bone density issues.

REPLY
@carolann1952

I was working full-time as a nurse and walking 3 miles every day. Right leg so numb I didn't realize I'd fractured my big toe. I was told that my neuropathy caused decreased blood flow to bones. I certainly found that to be true when I was trying to heal fractures. I did hyperbaric oxygen at wound care after BK Amp. I have burning pain right lower leg. I've been told nothing improves this like if one has other bone density issues.

Jump to this post

So sorry to hear this. I did some reading after seeing this, and I do not have diabetic neuropathy. I have idiopathic SFN. I'll keep searching to see if it has the same risks of fracture. No one could believe - or figure out - why my heels fractured. This was seven years ago. I wore two cam boots for 3-4 months, and they gradually healed. Long before my SFN diagnosis.

REPLY
@msmunro

Hi, my name is Mary and I have been dealing with neuropathy for a few years. I take 400 mg of Gabapetin 3Xday. I also have a bottle of 100mg that I had left over from a different dosage that I use 1 at a time if I am really struggling. I have had to give so many clothes away because they hurt. If my neuropathy is acting up, I find a hot bubble bath or bath with salts. That seems to soothe things down. I had a full length Artic fox coat that I finally am getting it repurposed into a throw. This was the only surface I could rest my legs on. This neuropathy thing can drive one mad! It is so relentless and so demanding of one’s attention. I am using a mink coat for my legs now and it isn’t as good. The fox is long and breathes where the fur of the mink is short. If you have a coat or want to pick one up to repurpose, I could give you advice on what works best. Have a great Labor Day Weekend!

Jump to this post

I like this mink coat solution! We deserve the best!

REPLY
Please sign in or register to post a reply.