Living with Neuropathy - Welcome to the group

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?

@wellness3070

Anxious to discuss peripheral leg neuropathy and treatments.

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Testing

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@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.

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Welcome Hugh (@yoda),
Do you know what that cause of your peripheral neuropathy is? What was the most important thing that you learned during the 2-day Pain Rehad event that you’d like to share with the group?

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@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.

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Hello Hugh (@yoda), Welcome to Mayo Connect, we are happy you joined us. Can you share a little bit about your diagnosis or do you have any questions you are trying to get answered?

I found this group in March of last year when I was searching for a neuropathy support group. It is a great place to ask questions of others that share health issues similar to yours.

John

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@wellness3070

Anxious to discuss peripheral leg neuropathy and treatments.

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They help with specific pain. I cut them to the size I want & put it over where my pain is.  I think they help.  I've even wrapped them around my toes. I rarely use them during the day because I don't want to over use & they don't always stay on.  When I first tried them, my doc supplied them because of the cost. They are generic now.

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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.

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@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.

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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.

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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.

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@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.

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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…

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@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.

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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!

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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.

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@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.

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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.

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@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.

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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.

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@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.

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Medical Marijuana works VERY well for my neuropathy.

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@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.

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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.

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@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.

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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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