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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 Support Group.

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anoyymous123 | @anoyymous123 | Apr 10, 2025

Have you tried new non opoid drug called Journavx?

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John, Volunteer Mentor | @johnbishop | Apr 10, 2025
In reply to @cavtanker "I've had it since 2008. It gets worse as time passes. I was 50 when it..." + (show)
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I've had it since 2008. It gets worse as time passes. I was 50 when it started, I'm 64 now and can barely walk. The pain is unbearable at times. Every single day I get around 3 attacks, these are seriously mind blowing pain attacks! From the tips of my fingers to the tips of my toes! It's truly the worst pain I've ever felt!
I wish to die every second of my life!

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Hello @cavtanker, I would like to add my welcome along with @harley22 and others. Neuropathy can be unbearable at times for a lot of us and it helps to learn as much as you can about the condition and the different treatments that may help provide some relief. Here's some information from the Foundation for Peripheral Neuropathy that might give you more information on what's available - https://www.foundationforpn.org/therapies/.

There are also many different discussions in the Neuropathy Support Group where others have shared what helps them. Here's the list of discussions in the group if you want to scan through them or search for specific treatments - https://connect.mayoclinic.org/group/neuropathy/.

Hoping you can find some relief soon.

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moorethrpy | @moorethrpy | Apr 10, 2025

Has anyone had success with acupuncture? Had one session...definitely was good for my feet...otherwise no difference.

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artemis1886 | @artemis1886 | Apr 10, 2025
In reply to @kimmykat "I have neuropathy in my feet, calves, and hands. I take gabapentin but it doesn't do..." + (show)
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I have neuropathy in my feet, calves, and hands. I take gabapentin but it doesn't do much. I also had a laminectomy in left side of my back due to leg cramping and seizing up and causing excrutiating pain. It didn't helpmy leg. It went more numb or dead as I call it because it really is dead. Plus, before I had that surgery, they tried a shot, which didn't work and caused my right calve to die also. Now its in my hands. I don't know what to do, it's just getting worse. I feel I will eventually be in a wheel chair. Doctors just give meds with and tell you to cut out sugars. It's unbelievable there is no real help here. I am in Wyoming.

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The only true help is IVIG getting a doctor to prescribe it is an act of congress. What neurologist do not tell you is that it is progressive. Neuropathy moves to anywhere in your body that has nerves. It has moved into my heart. It either beats too slow or too fast. It causes your blood pressure to go up and down. I lost feeling in my hands a couple of years ago. Constantly, cutting them and they bleed I can’t feel it until I look down and blood is everywhere.
IVIG helps with nerve regeneration. Mine is autoimmune neuropathy and I can’t tell the difference between when I take it and when I don’t.

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robin8359 | @robin8359 | Apr 10, 2025

I’ve been dealing with PN in both feet for almost 20 yrs. And now it’s starting in my hands. This condition has greatly reduced my ability to work, socialize, and live a happy life.
I have found that NOTHING works (creams, ointments, etc.). except Lyrica and it only takes the edge off. I still have pins & needles and stabbing pains. This has caused me a great deal of stress the past 20 yrs. I will admit that years ago I found a dr who prescribed hydrocodine (Lortab). I was prescribed 2 10mg per day. I broke them in half & took 5mg in the morning around 9am, then 5mg around 2pm, then 5mg around 7pm, and the last dose of 5mg around 11pm. That kept me pain free all day. It was wonderful to be able to actually enjoy going to work and going out with my friends. But, alas, I moved to another state where my PCP referred me to a pain clinic, only to be told that the strongest thing they prescribe is Lyrica so that’s all I take now. The struggle dealing with the pain is real. I hope you can find something that works for you.

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monika193 | @monika193 | Apr 11, 2025
In reply to @johnbishop "Hi @pedie - you are right about the meds and neuropathy. They do nothing for numbness..." + (show)
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Hi @pedie - you are right about the meds and neuropathy. They do nothing for numbness and are all directed to mask or block the pain from nerve damage. I'm guessing your neuropathy is from your chemo treatments. I've had numbness in my feet for over 20 years but got a diagnosis in March 2016 when I decided to start becoming my own advocate. My neurologist diagnosed me with idiopathic small fiber peripheral neuropathy which was in both legs from just below the knees down through the toes. He also told me there was nothing that could be done - no meds or topical creams/oils help for numbness.

I started doing a lot of reading and online research and have tried many things that didn't work. Since there are no drugs that will fix or repair damaged nerves, I started looking at nutritional and mineral supplements. Someone pointed me to a book by Dr. Terry Wahls - Wahls Protocol Diet and I got the book to check it out. She suffers from Multiple sclerosis (MS) and did her own research into treating her MS through diet and nutrition. She has an amazing story to tell if you want to read it - http://terrywahls.com/about/about-terry-wahls/. This got me looking at nutrition and diet from a different viewpoint.

In September 2016, I started taking a specific group of over the counter high quality supplements/vitamins. By the end of the year the numbness in both of my legs seems to have reversed a little or at the very least has stopped progressing which is what my neurologist told me it would do. He said it would continue spreading upward in the body until if affected a vital organ and told me to let him know if it gets worse. To date the numbness has gone from just below my knees to just above the ankles. It might not seem like much progress but to me it means the upward spreading of the neuropathy has been reversed or at a minimum stopped. It may not work for everyone but it has definitely helped me. Others taking the protocol have been able to completely get off of the pain drugs once they are on the full protocol for awhile. I found this treatment in a Facebook closed group which has now become a 501c3 - Solutions to Peripheral Neuropathy Pain & Discomfort (https://www.facebook.com/groups/spnpd/).

There are a lot of scams out there so it's always best to do your own research to avoid them. There is a lot of good information on what to look for to avoid a scam:

Avoiding scams and snake oil treatments post on Mayo Connect:
http://mayocl.in/2gcdDNt
FDA's HEALTH FRAUD PAGE:
http://bit.ly/2n6kpHr
Hopefully you will find something that helps with your neuropathy.

John

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May I ask which supplements/minerals you have been taking. Thank you for the information.

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John, Volunteer Mentor | @johnbishop | Apr 11, 2025
In reply to @monika193 "May I ask which supplements/minerals you have been taking. Thank you for the information." + (show)
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May I ask which supplements/minerals you have been taking. Thank you for the information.

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Hi @monika193, Welcome to Connect. Here's a list of the supplements I take for my neuropathy along with links to research information - https://cdn.prod-carehubs.net/n1/748e8fe697af5de8/uploads/2023/11/WHY-THE-PROTOCOL.pdf. I think most of the supplements are also listed on the complementary and alternative treatments document on the Foundation for Peripheral Neuropathy site here - https://www.foundationforpn.org/wp-content/uploads/2024/11/Complementary-and-Alternative-Treatments.pdf. I don't have any pain, just the numbness and some tingling which I still have. I've been taking the supplements since September 2016 and while it hasn't gotten rid of the numbness it also hasn't gotten any worse so I consider that a win.

Have you done any research on your diagnosis/symptoms?

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monika193 | @monika193 | Apr 11, 2025

I am just embarking on this site as have come to a stand still with medical aspect of neuropathy. The cause is diabetic neuropathy with tingling/numbness/burning sensation in toes and now creeping in the foot. No pain yet, but walking is getting very tiring. By joining in this group I am searching for any advice I can get to stabilize the condition realizing that what works for one may not be a miracle cure for others. Thank you I much appreciate your response.

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John, Volunteer Mentor | @johnbishop | Apr 11, 2025
In reply to @monika193 "I am just embarking on this site as have come to a stand still with medical..." + (show)
Profile picture for monika193 @monika193

I am just embarking on this site as have come to a stand still with medical aspect of neuropathy. The cause is diabetic neuropathy with tingling/numbness/burning sensation in toes and now creeping in the foot. No pain yet, but walking is getting very tiring. By joining in this group I am searching for any advice I can get to stabilize the condition realizing that what works for one may not be a miracle cure for others. Thank you I much appreciate your response.

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Since you mentioned diabetic neuropathy, I thought you might be interested in a couple of webinars from the Foundation for Peripheral Neuropathy:
-- Demystifying Diabetic Peripheral Neuropathy - https://youtu.be/WAzI0mK4cyk
-- A Holistic Approach to Diabetic Peripheral Neuropathy - https://youtu.be/pauUH7k9ZJI

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monika193 | @monika193 | Apr 11, 2025
In reply to @johnbishop "Since you mentioned diabetic neuropathy, I thought you might be interested in a couple of webinars..." + (show)
Profile picture for John, Volunteer Mentor @johnbishop

Since you mentioned diabetic neuropathy, I thought you might be interested in a couple of webinars from the Foundation for Peripheral Neuropathy:
-- Demystifying Diabetic Peripheral Neuropathy - https://youtu.be/WAzI0mK4cyk
-- A Holistic Approach to Diabetic Peripheral Neuropathy - https://youtu.be/pauUH7k9ZJI

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Thank you.

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