Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

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

@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

Jump to this post

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

REPLY
@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.

REPLY

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?

REPLY

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?

REPLY

I had two back surgeries to relieve the impengment on my nerves near L4 – L5. It helped a lot but have pain and numbness in my left leg and foot. I think the surgeries help me quite a bit.

REPLY
@suzylulu

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

Jump to this post

It is difficult walking because of the numbness. I tried gababentin for only 2 months. Does it take longer to help?

REPLY
@suzylulu

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

Jump to this post

Hello @suzylulu

I have not started taking Gabapentin myself so I can't tell you how long it would take to make a difference. You might check with your pharmacist or your doctor and see what they have to say about that.

As I understand from your last post you don't have pain – just numbness in your feet?

Teresa

REPLY
@allisonsnow

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?

Jump to this post

@allisonsnow Hi Allison,

There are no stupid ?s on Connect. I really don't know the difference between the neuropathy caused by diabetes and the one caused by chemo. Is the neuropathy you have numbness or pain or both?

Here is an article from Mayo Clinic about chemo related neuropathy. Perhaps this will give you some information that you can use when you talk with your doctor.
http://www.mayo.edu/research/labs/regenerative-neurobiology/projects/chemotherapy-induced-peripheral-neuropathy-cipn
I look forward to hearing from you and finding out if you have come up with any solutions.

Teresa

REPLY
@allisonsnow

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?

Jump to this post

Hi Allison @allisonsnow, I'm with Teresa @hopeful33250. There are no stupid questions. I really don't think there is a difference from the patient's perspective. I have no medical background or training but neuropathy is caused by nerve damage of some sort which can be caused by many different things. Here are a few more references that may help explain and answer some of your questions.

National Institutes of Health site – Peripheral Neuropathy Fact Sheet:
https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Peripheral-Neuropathy-Fact-Sheet

Chemotherapy-induced peripheral neuropathy: an update on the current understanding
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4920214/

This site has an easy to understand and read answer to your question:
Is there any difference between Diabetic Neuropathy and other forms of Neuropathy?
http://mcvitamins.com/health%20articles/diabetes-non-diabetic-neuropathy.htm

Allison can you share if you've made any changes or tried any treatments to help with your neuropathy?

John

REPLY
@suzylulu

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

Jump to this post

Hi @suzlulu,
I was put on gabapentin for a month before I went back to my Mayo doctor and told her it wasn't working. That was before I met with the neurologist and was diagnosed with small fiber peripheral neuropathy. I only have numbness and tingling with my neuropathy. I do not have the bad pain that others have. When I told my doctor it wasn't working she had a consult with another doctor who came in and asked about my symptoms. When I told him no pain only numbness he immediately said gabapentin only works for pain by blocking the pain signals in the brain. That's when they setup an appointment with a neurologist. After I met with the neurologist he told me there are no medications or over the counter topical creams/ointments that help with numbness. This is what started me on my search for something that would help me and how I found Mayo Connect.

I would have a discussion with your doctor about gabapentin. If you are not having pain with the neuropathy, I don't think there is a reason to take the medication.

Have you found anything that helps you or tried anything for treatments?

John

REPLY
Please sign in or register to post a reply.
  Request Appointment