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.

Parus | @parus | Jul 27, 2017
In reply to @mfobrien36 "Don't laugh... I may have hit on something by accident that might help some of you...." + (show)
@mfobrien36

Don't laugh... I may have hit on something by accident that might help some of you. Most nights I use a foot cream on my "neuro-pathetic" feet just to keep them soft. I have the type of neuropathy that causes me to feel everything; for example - I can't stand on the bathmat in my tub/shower as the little nubs really hurt. I get sharp, shooting pains in my toes and it wakes me up at night several times. I've tried gabapentin - didn't work at all! SO... the other night, I picked up my Ben Gay - by accident - rather than my foot cream and before I realized my mistake (how'd you miss the smell?) I had rubbed it on my foot and ankle. It felt kinda good... so I rubbed it on the other foot. I slept through the night. The first time in many a month. I thought this likely was a fluke, but decided last night to try it again... it worked again and today both feet feel some better. Usually, night time is when my feet bother me most so I was delighted. Don't know if it is a fluke or not, or if the Anti-neuropathy fairies have visited me while I sleep (I'm Irish so it could happen) but it seems like a cheap thing to try. I know it sounds goofy but if putting a bar of soap between your sheets wasn't considered too "strange" a suggestion - maybe this might work for somebody besides me. I doubt whether it would work on feet/ankles etc. that have open sores, though... that might really hurt.

Jump to this post

LOL!!! I had to laugh and how did you ever not notice that smell???? Please I am not making fun as neuropathy is a horrid thing...I have total body neuropathy and I feel like I am covered in cobwebs...neurontin (Gabby generic) turned me psychotic. Ben Gay I cannot tolerate the smell at all and this is what still has me chuckling as to how you did not smell that odor...duh.

I appreciate you sharing...the luck of the Irish. It may help someone else and your telling of your discovery put some laughter in my day. Very well told story about your discovery...I enjoy a good story.

My neuropathy is caused by fibromyalgia or so I am told. At times I believe that fibro is the dumping grounds for inexplicable conditions.

Thanks again.

REPLY
Parus | @parus | Jul 27, 2017

Whilst I am in neuropathy territory does anyone know of any meds other than Lyrica, Savella or Neurontin (Gabapentin) for this dreadful affliction??? I am not diabetic. I read about the Ben Gay and know I have total bod neuropathy and cannot tolerate the BG odor. I have also tried the essential oil lavender and some others w/o any relief.

REPLY
5 replies
yoda | @yoda | Jul 27, 2017
In reply to @yoda "I'm Hugh, new to this group, joining because they tell me I have peripheral neuropathy. Having..." + (show)
@yoda

I'm Hugh, new to this group, joining because they tell me I have peripheral neuropathy. Having been to Mayo for the 2-day Pain Rehab event, I am impressed by Mayo and interested in this group. I hope to be useful, and to be informed and advised.

Jump to this post

Actually, I don’t know what caused the neuropathy—I’m going through blood tests to help determine that!
So far, the leading candidate may be too much Vit B6,  of all things. I’ve no idea of how a B Vitamin can cause nerve pain, but I’m told it can. 
For the Pain Rehab 2-day, several things really helped. One was the information about pain and self management, gently & respectfully stated. Another was meeting folks who had far worse pain than I, but were gentle and gracious with others—positive role models. Also helpful were the negative role models, folks who took out their pain on others around them…

REPLY
yoda | @yoda | Jul 27, 2017
In reply to @yoda "I'm Hugh, new to this group, joining because they tell me I have peripheral neuropathy. Having..." + (show)
@yoda

I'm Hugh, new to this group, joining because they tell me I have peripheral neuropathy. Having been to Mayo for the 2-day Pain Rehab event, I am impressed by Mayo and interested in this group. I hope to be useful, and to be informed and advised.

Jump to this post

Not a lot to share, John, ‘cause I don’t know much. A neurologist examined me and said I had peripheral neuropathy, and sent me for blood tests. She said it was most likely diabetic, but I don’t have diabetes.  She said too much B6 could do it, and it turns out i do have too much B6—so I’ve dropped the multi-vitamin supplement i had been taking.
I had been convinced my leg pain was a result of spinal stenosis.  I guess I’ll find out!

REPLY
Lynsorensen | @lynsorensen | Jul 27, 2017

I also tried gabapentin and lyrica (both of them useless and with too many side effects and then had doctors (post op) and hospital staff insisting on heavy opioids. I am convinced that these lab-made chemical medications did me no good at all. Now I rely on things like Penetrex, Hemp oil, CBD ointment, and other 'natural' remedies and the pain in my feet and legs is gone and so are all those side-effects. I still have the numbness and cannot feel heat or cold and have difficulty maintaining balance, but the deep ache, the sudden stabbing pains, and the pins and needles have either been muted to the point they can be ignored or are gone completely. I am fed up with the medical profession pushing big pharma on us.

REPLY
2 replies
Parus | @parus | Jul 27, 2017
In reply to @lynsorensen "I also tried gabapentin and lyrica (both of them useless and with too many side effects..." + (show)
@lynsorensen

I also tried gabapentin and lyrica (both of them useless and with too many side effects and then had doctors (post op) and hospital staff insisting on heavy opioids. I am convinced that these lab-made chemical medications did me no good at all. Now I rely on things like Penetrex, Hemp oil, CBD ointment, and other 'natural' remedies and the pain in my feet and legs is gone and so are all those side-effects. I still have the numbness and cannot feel heat or cold and have difficulty maintaining balance, but the deep ache, the sudden stabbing pains, and the pins and needles have either been muted to the point they can be ignored or are gone completely. I am fed up with the medical profession pushing big pharma on us.

Jump to this post

Agree with you on the medical profession pushing drugs and using their prescription pads as weapons of harm...they just prescribe as this is how they are trained...healthy alternative insurance will not cover and I had better get down from my soapbox.

REPLY
Mary | @mfobrien36 | Jul 27, 2017
In reply to @mfobrien36 "Don't laugh... I may have hit on something by accident that might help some of you...." + (show)
@mfobrien36

Don't laugh... I may have hit on something by accident that might help some of you. Most nights I use a foot cream on my "neuro-pathetic" feet just to keep them soft. I have the type of neuropathy that causes me to feel everything; for example - I can't stand on the bathmat in my tub/shower as the little nubs really hurt. I get sharp, shooting pains in my toes and it wakes me up at night several times. I've tried gabapentin - didn't work at all! SO... the other night, I picked up my Ben Gay - by accident - rather than my foot cream and before I realized my mistake (how'd you miss the smell?) I had rubbed it on my foot and ankle. It felt kinda good... so I rubbed it on the other foot. I slept through the night. The first time in many a month. I thought this likely was a fluke, but decided last night to try it again... it worked again and today both feet feel some better. Usually, night time is when my feet bother me most so I was delighted. Don't know if it is a fluke or not, or if the Anti-neuropathy fairies have visited me while I sleep (I'm Irish so it could happen) but it seems like a cheap thing to try. I know it sounds goofy but if putting a bar of soap between your sheets wasn't considered too "strange" a suggestion - maybe this might work for somebody besides me. I doubt whether it would work on feet/ankles etc. that have open sores, though... that might really hurt.

Jump to this post

I agree about the fibro dumping grounds - My dr also suggested that fibro was one of my problems. The smell went unnoticed because I was so intent on watching the news.

REPLY
medic7054 | @medic7054 | Jul 27, 2017
In reply to @parus "Whilst I am in neuropathy territory does anyone know of any meds other than Lyrica, Savella..." + (show)
@parus

Whilst I am in neuropathy territory does anyone know of any meds other than Lyrica, Savella or Neurontin (Gabapentin) for this dreadful affliction??? I am not diabetic. I read about the Ben Gay and know I have total bod neuropathy and cannot tolerate the BG odor. I have also tried the essential oil lavender and some others w/o any relief.

Jump to this post

Medical Marijuana works VERY well for my neuropathy.

REPLY
1 reply
Lynsorensen | @lynsorensen | Jul 27, 2017
In reply to @parus "Whilst I am in neuropathy territory does anyone know of any meds other than Lyrica, Savella..." + (show)
@parus

Whilst I am in neuropathy territory does anyone know of any meds other than Lyrica, Savella or Neurontin (Gabapentin) for this dreadful affliction??? I am not diabetic. I read about the Ben Gay and know I have total bod neuropathy and cannot tolerate the BG odor. I have also tried the essential oil lavender and some others w/o any relief.

Jump to this post

Mine too.  And CBD oils, ointments, and capsules are not hallucinogenic.  I am so glad I was able to get away from the opioid pills.

REPLY
kevinking kking | @kevinking | Jul 27, 2017
In reply to @lynsorensen "I also tried gabapentin and lyrica (both of them useless and with too many side effects..." + (show)
@lynsorensen

I also tried gabapentin and lyrica (both of them useless and with too many side effects and then had doctors (post op) and hospital staff insisting on heavy opioids. I am convinced that these lab-made chemical medications did me no good at all. Now I rely on things like Penetrex, Hemp oil, CBD ointment, and other 'natural' remedies and the pain in my feet and legs is gone and so are all those side-effects. I still have the numbness and cannot feel heat or cold and have difficulty maintaining balance, but the deep ache, the sudden stabbing pains, and the pins and needles have either been muted to the point they can be ignored or are gone completely. I am fed up with the medical profession pushing big pharma on us.

Jump to this post

I agree that the medical professionals are too quick to prescribe opiods, which are dangerous and to be avoided at all costs.
But, then I must admit that my polyneuropathy's symptoms are more instability and weakness and less pain. I am both sad to hear so many people have a neuropathy but heartened to hear that I am not alone. Thank you for sharing.

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