Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

My neurologist has diagnosed me with peripheral neuropathy, but I don't really understand it. I know I have pain, numbness and tingling in my left leg.and foot I thought it was the after affects of the shingles about 5 years ago. I also have restless legs and back problems big time. My legs and feet cramp when I sit and during the night. I am taking Pramipexole and Gabapentin. I am alo on oxygen only at night. Does peripheral neuropathy get worse as time goes on? My right leg is starting to have the same symptoms.

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@hosta

My neurologist has diagnosed me with peripheral neuropathy, but I don't really understand it. I know I have pain, numbness and tingling in my left leg.and foot I thought it was the after affects of the shingles about 5 years ago. I also have restless legs and back problems big time. My legs and feet cramp when I sit and during the night. I am taking Pramipexole and Gabapentin. I am alo on oxygen only at night. Does peripheral neuropathy get worse as time goes on? My right leg is starting to have the same symptoms.

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Hello Eve (@hosta) — I have had small fiber peripheral neuropathy for over 20 years but only have the numbness and no associated pain. I have no medical training or background but I know each of us are different when it comes to peripheral neuropathy. Here is an easy to understand explanation of small fiber peripheral neuropathy by Matthew B. Jensen. Assistant Professor of Neurology, University of Wisconsin:
https://youtu.be/8nrv7lRvvwU

You might also be interested in the following discussion in the Sleep Health Group – Restless Leg Syndrome:
https://connect.mayoclinic.org/discussion/restless-leg-syndrome-2a74e5/

John

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@hosta

My neurologist has diagnosed me with peripheral neuropathy, but I don't really understand it. I know I have pain, numbness and tingling in my left leg.and foot I thought it was the after affects of the shingles about 5 years ago. I also have restless legs and back problems big time. My legs and feet cramp when I sit and during the night. I am taking Pramipexole and Gabapentin. I am alo on oxygen only at night. Does peripheral neuropathy get worse as time goes on? My right leg is starting to have the same symptoms.

Jump to this post

Peripheral neuropathy is indeed different for each of us. Mine progressed rapidly up my legs to the knee, then stopped. Is also in my hands. I take Gabapentin to control pain or stinging. No side effects. I have learned to live with it and do not give it much thought. I deal with a bulging disc which causes Sciatica which takes my mind off most of my other problems. 🙂

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I am dealing with neuropathy I have tried gabapetin (spelling?)pills and foot rub. Nothing has worked. It is difficult to walk.

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@suzylulu

I am dealing with neuropathy I have tried gabapetin (spelling?)pills and foot rub. Nothing has worked. It is difficult to walk.

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I have had good results with Gabapentin at 300 mg. dose ,twice or three times daily, for several mos. now. One resident here has been using Lyrica for over one year, a trade name, with success.

Try pain relief with acetaminophen too.

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@suzylulu

I am dealing with neuropathy I have tried gabapetin (spelling?)pills and foot rub. Nothing has worked. It is difficult to walk.

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Hello @suzylulu

I am so sorry to hear that your neuropathy makes it difficult to walk. That must be so uncomfortable. If the difficulty walking because of pain or numbness or a combination of both?

Have you discussed with your doctor any other meds or treatments that might help since the Gabapentin did not work for you?

I'm going to invite mentor, John Bishop, @johnbishop to this discussion. John is a mentor who has also dealt with neuropathy a long time. He might be able to offer some insights for you.

I look forward to hearing from you again.

Teresa

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I too suffer with the problem of walking with neuropathy and mine is 100% from the pain aspect. Taking 900 mg of gabapentin 3 times a day to just dumb down the issue. Anymore than 30 minutes walking or standing and I am in serious pain, like crushed glass in my shoes. Used to jog 25-30 miles a week and have run many half marathons and one completely. Really miss being able to be active.

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Hello @suzylulu @ujeeniack and @timmckinney — As others have mentioned here we are all different and what works for some may or may not work for others. I too have difficulty walking with my peripheral neuropathy even though I only have the numbness and tingling associated with my neuropathy and have no pain like most of you have. I have no medical training or background but from my research and discussion with my neurologist, the drugs are only for the pain and have zero affect for numbness. Both of my legs are affected. Comfortable shoes that have some support help with the walking but even with this I can't walk more than a few blocks at a time. I do think it's important to keep trying and keep working on strengthening your legs. I have a recumbent exercise bike that I ride for 30 minutes when I first get up in the morning (most mornings).

I have had PN for more than 20 years. It started in the toes like most of you and over the years it gradually worked it's way up to just below the knees. I take over the counter supplements I found through a closed Facebook group – Solutions to Peripheral Neuropathy Pain & Discomfort. They also have a website and have 501c3 status – http://solutions2pnpd.com/. I have been taking them since Sept 2016. By December 2016 the numbness went from just below the knees to just above the ankles and I've made no progress since then…but it's a win for me because it hasn't gotten any worse like my neurologist said it would so I continue to take the supplements. The group is over 7,000+ and many have successfully gotten off of all drugs and no longer have the associated pain with PN. If I can make one important point is that each of us should do our own research as well as be our own advocate when it comes to our health. There are a lot of products, companies, groups, etc. out there that are making money selling us stuff that may or may not help.

Quazar's guidance about avoiding scams and snake oil cures
https://connect.mayoclinic.org/discussion/how-to-avoid-quacks-and-snake-oil-treatments/

FDA's Health Fraud Page
https://www.fda.gov/ForConsumers/ProtectYourself/HealthFraud/ucm539101.htm

NIH's National Center for Complementary and Integrative Health (NCCIH) which offers guidance about integrative health and how to evaluate it.
https://nccih.nih.gov/health/decisions

I also think nutrition plays a big part in the cellular health of our bodies so I try to stay away from all processed foods but I'm not perfect with it. I also try to buy organic when possible and eat a lot less red meat than I used to eat. I've also found that I can't do a lot of things I used to be able to do so I try to live within my limitations and find other things that I like doing.

Hoping you all find a solution that works for you.

John

REPLY
@johnbishop

Hello @suzylulu @ujeeniack and @timmckinney — As others have mentioned here we are all different and what works for some may or may not work for others. I too have difficulty walking with my peripheral neuropathy even though I only have the numbness and tingling associated with my neuropathy and have no pain like most of you have. I have no medical training or background but from my research and discussion with my neurologist, the drugs are only for the pain and have zero affect for numbness. Both of my legs are affected. Comfortable shoes that have some support help with the walking but even with this I can't walk more than a few blocks at a time. I do think it's important to keep trying and keep working on strengthening your legs. I have a recumbent exercise bike that I ride for 30 minutes when I first get up in the morning (most mornings).

I have had PN for more than 20 years. It started in the toes like most of you and over the years it gradually worked it's way up to just below the knees. I take over the counter supplements I found through a closed Facebook group – Solutions to Peripheral Neuropathy Pain & Discomfort. They also have a website and have 501c3 status – http://solutions2pnpd.com/. I have been taking them since Sept 2016. By December 2016 the numbness went from just below the knees to just above the ankles and I've made no progress since then…but it's a win for me because it hasn't gotten any worse like my neurologist said it would so I continue to take the supplements. The group is over 7,000+ and many have successfully gotten off of all drugs and no longer have the associated pain with PN. If I can make one important point is that each of us should do our own research as well as be our own advocate when it comes to our health. There are a lot of products, companies, groups, etc. out there that are making money selling us stuff that may or may not help.

Quazar's guidance about avoiding scams and snake oil cures
https://connect.mayoclinic.org/discussion/how-to-avoid-quacks-and-snake-oil-treatments/

FDA's Health Fraud Page
https://www.fda.gov/ForConsumers/ProtectYourself/HealthFraud/ucm539101.htm

NIH's National Center for Complementary and Integrative Health (NCCIH) which offers guidance about integrative health and how to evaluate it.
https://nccih.nih.gov/health/decisions

I also think nutrition plays a big part in the cellular health of our bodies so I try to stay away from all processed foods but I'm not perfect with it. I also try to buy organic when possible and eat a lot less red meat than I used to eat. I've also found that I can't do a lot of things I used to be able to do so I try to live within my limitations and find other things that I like doing.

Hoping you all find a solution that works for you.

John

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I just saw an interesting article from the Foundation of Peripheral Neuropathy email I received that I thought I would share here:

Walk Away from Nerve Pain – Neuropathy, a common complication of diabetes, was once thought to be untreatable. Today, a variety of treatments and strategies are available to ease the discomfort.
https://www.brainandlife.org/the-magazine/article/app/14/2/18/walk-away-from-nerve-pain-neuropathy-a-common-complication-of

More new research:
Molecule May Be Key to Pain Relief in Diabetic Neuropathy
http://news.feinberg.northwestern.edu/2018/04/molecule-may-be-key-to-pain-relief-in-diabetic-neuropathy/

John

REPLY
@johnbishop

Hello @suzylulu @ujeeniack and @timmckinney — As others have mentioned here we are all different and what works for some may or may not work for others. I too have difficulty walking with my peripheral neuropathy even though I only have the numbness and tingling associated with my neuropathy and have no pain like most of you have. I have no medical training or background but from my research and discussion with my neurologist, the drugs are only for the pain and have zero affect for numbness. Both of my legs are affected. Comfortable shoes that have some support help with the walking but even with this I can't walk more than a few blocks at a time. I do think it's important to keep trying and keep working on strengthening your legs. I have a recumbent exercise bike that I ride for 30 minutes when I first get up in the morning (most mornings).

I have had PN for more than 20 years. It started in the toes like most of you and over the years it gradually worked it's way up to just below the knees. I take over the counter supplements I found through a closed Facebook group – Solutions to Peripheral Neuropathy Pain & Discomfort. They also have a website and have 501c3 status – http://solutions2pnpd.com/. I have been taking them since Sept 2016. By December 2016 the numbness went from just below the knees to just above the ankles and I've made no progress since then…but it's a win for me because it hasn't gotten any worse like my neurologist said it would so I continue to take the supplements. The group is over 7,000+ and many have successfully gotten off of all drugs and no longer have the associated pain with PN. If I can make one important point is that each of us should do our own research as well as be our own advocate when it comes to our health. There are a lot of products, companies, groups, etc. out there that are making money selling us stuff that may or may not help.

Quazar's guidance about avoiding scams and snake oil cures
https://connect.mayoclinic.org/discussion/how-to-avoid-quacks-and-snake-oil-treatments/

FDA's Health Fraud Page
https://www.fda.gov/ForConsumers/ProtectYourself/HealthFraud/ucm539101.htm

NIH's National Center for Complementary and Integrative Health (NCCIH) which offers guidance about integrative health and how to evaluate it.
https://nccih.nih.gov/health/decisions

I also think nutrition plays a big part in the cellular health of our bodies so I try to stay away from all processed foods but I'm not perfect with it. I also try to buy organic when possible and eat a lot less red meat than I used to eat. I've also found that I can't do a lot of things I used to be able to do so I try to live within my limitations and find other things that I like doing.

Hoping you all find a solution that works for you.

John

Jump to this post

I’m really happy that you share your knowledge so willingly with all of us thank you

REPLY
@johnbishop

Hello @suzylulu @ujeeniack and @timmckinney — As others have mentioned here we are all different and what works for some may or may not work for others. I too have difficulty walking with my peripheral neuropathy even though I only have the numbness and tingling associated with my neuropathy and have no pain like most of you have. I have no medical training or background but from my research and discussion with my neurologist, the drugs are only for the pain and have zero affect for numbness. Both of my legs are affected. Comfortable shoes that have some support help with the walking but even with this I can't walk more than a few blocks at a time. I do think it's important to keep trying and keep working on strengthening your legs. I have a recumbent exercise bike that I ride for 30 minutes when I first get up in the morning (most mornings).

I have had PN for more than 20 years. It started in the toes like most of you and over the years it gradually worked it's way up to just below the knees. I take over the counter supplements I found through a closed Facebook group – Solutions to Peripheral Neuropathy Pain & Discomfort. They also have a website and have 501c3 status – http://solutions2pnpd.com/. I have been taking them since Sept 2016. By December 2016 the numbness went from just below the knees to just above the ankles and I've made no progress since then…but it's a win for me because it hasn't gotten any worse like my neurologist said it would so I continue to take the supplements. The group is over 7,000+ and many have successfully gotten off of all drugs and no longer have the associated pain with PN. If I can make one important point is that each of us should do our own research as well as be our own advocate when it comes to our health. There are a lot of products, companies, groups, etc. out there that are making money selling us stuff that may or may not help.

Quazar's guidance about avoiding scams and snake oil cures
https://connect.mayoclinic.org/discussion/how-to-avoid-quacks-and-snake-oil-treatments/

FDA's Health Fraud Page
https://www.fda.gov/ForConsumers/ProtectYourself/HealthFraud/ucm539101.htm

NIH's National Center for Complementary and Integrative Health (NCCIH) which offers guidance about integrative health and how to evaluate it.
https://nccih.nih.gov/health/decisions

I also think nutrition plays a big part in the cellular health of our bodies so I try to stay away from all processed foods but I'm not perfect with it. I also try to buy organic when possible and eat a lot less red meat than I used to eat. I've also found that I can't do a lot of things I used to be able to do so I try to live within my limitations and find other things that I like doing.

Hoping you all find a solution that works for you.

John

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Thank you @prudence. I think this is what makes Connect a great place to share and ask questions. We all learn from each other.

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@timmckinney

I too suffer with the problem of walking with neuropathy and mine is 100% from the pain aspect. Taking 900 mg of gabapentin 3 times a day to just dumb down the issue. Anymore than 30 minutes walking or standing and I am in serious pain, like crushed glass in my shoes. Used to jog 25-30 miles a week and have run many half marathons and one completely. Really miss being able to be active.

Jump to this post

The losses for previously active folks are huge and can lead to depression. It has been helpful for me to actually grieve for the loss of my ability to join my walking group for the week-long inn to inn walking trips I have so enjoyed. The next step is to find replacements for those loses that are mentally stimulating, entertaining or work as distractions from the pain. It is a challenge to say the least. Good luck to you and I hope you find activities that are joyful.

REPLY
@johnbishop

Hello @suzylulu @ujeeniack and @timmckinney — As others have mentioned here we are all different and what works for some may or may not work for others. I too have difficulty walking with my peripheral neuropathy even though I only have the numbness and tingling associated with my neuropathy and have no pain like most of you have. I have no medical training or background but from my research and discussion with my neurologist, the drugs are only for the pain and have zero affect for numbness. Both of my legs are affected. Comfortable shoes that have some support help with the walking but even with this I can't walk more than a few blocks at a time. I do think it's important to keep trying and keep working on strengthening your legs. I have a recumbent exercise bike that I ride for 30 minutes when I first get up in the morning (most mornings).

I have had PN for more than 20 years. It started in the toes like most of you and over the years it gradually worked it's way up to just below the knees. I take over the counter supplements I found through a closed Facebook group – Solutions to Peripheral Neuropathy Pain & Discomfort. They also have a website and have 501c3 status – http://solutions2pnpd.com/. I have been taking them since Sept 2016. By December 2016 the numbness went from just below the knees to just above the ankles and I've made no progress since then…but it's a win for me because it hasn't gotten any worse like my neurologist said it would so I continue to take the supplements. The group is over 7,000+ and many have successfully gotten off of all drugs and no longer have the associated pain with PN. If I can make one important point is that each of us should do our own research as well as be our own advocate when it comes to our health. There are a lot of products, companies, groups, etc. out there that are making money selling us stuff that may or may not help.

Quazar's guidance about avoiding scams and snake oil cures
https://connect.mayoclinic.org/discussion/how-to-avoid-quacks-and-snake-oil-treatments/

FDA's Health Fraud Page
https://www.fda.gov/ForConsumers/ProtectYourself/HealthFraud/ucm539101.htm

NIH's National Center for Complementary and Integrative Health (NCCIH) which offers guidance about integrative health and how to evaluate it.
https://nccih.nih.gov/health/decisions

I also think nutrition plays a big part in the cellular health of our bodies so I try to stay away from all processed foods but I'm not perfect with it. I also try to buy organic when possible and eat a lot less red meat than I used to eat. I've also found that I can't do a lot of things I used to be able to do so I try to live within my limitations and find other things that I like doing.

Hoping you all find a solution that works for you.

John

Jump to this post

Hello everyone. I have had burning, stinging pain in my left foot and lower leg for 10 years caused by lumbar stenosis. I have tried many medications and have had 2 back surgeries. For me, 400 mg of Gabapentin helps along with an OTC cream by Magnilife that I apply to my foot and lower leg. I recently am trying a HEMP oil CBD extract the a couple of friends use. I think it is also helping. I still have my leg strength but if I walk to far the pain get worse. I also focus on other hobbies and interests to keep my mind off the pain as well as elevating my leg. I hope this helps.

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Hi Robert – I have a sheath tumor on my L4-L5 nerve. I have burning pain on the side of my right leg from the groin area, back of my knee and down my calf. Why did you have two back surgeries?

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what I have is a big ?. It may sound like a stupid ? but what is the difference between diabetic neuropathy and that caused by the chemo I received. They said I may get it and it probably wouldn't go away (it didn't). So when it didn't I wasn't surprised but it has gotten worse. What can I do?

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