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?

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

@davidhpress

You can read about it. I don’t know if it’s good yet but look at the ingredients info on Amazon for “Nuturna Alpha-Lipoic 700 mg” with a list of herbs, vitamins and minerals that, if it works well will lower the number of pills I take by 10 per day and cost the same. To be continued- I’m hopeful. Just to be clear, I have no connection to Amazon or Nuterna - I’m just an individual trying to best live with and control my neuropathy. Again, I’ll report back here as soon as I have experienced the good or bad of this product.

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Thanks for the information. Good Luck with this vitamin and herbal blend. I hope it is helpful. I look forward to hearing about your experience.

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Has anyone tried the Nuturna topical cream for neuropathy? Was it significantly helpful?

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Hi. My name is Sara and I've been living with neuropathy for over at least 7 years now. I've been taking Gabapentin for at least 5 years and now my dose is up to 1200mg a day and it still doesn't even help a bit. The only time not in pain is when I knock my self out at night taking muscle relaxers etc. How does anyone get relief? I can't stand it any longer.

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@shomeier1

Hi. My name is Sara and I've been living with neuropathy for over at least 7 years now. I've been taking Gabapentin for at least 5 years and now my dose is up to 1200mg a day and it still doesn't even help a bit. The only time not in pain is when I knock my self out at night taking muscle relaxers etc. How does anyone get relief? I can't stand it any longer.

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Hi Sara @shomeier1, I see that it's been awhile since you last posted and would like to welcome you back to Connect. I'm sorry to hear you are not getting any relief for your neuropathy pain. It sounds like you have increased your gabapentin dosage over the last 5 years but it doesn't seem to be helping. It's easy to get discouraged when you are in pain and I'm hoping you will find something that provides more relief. There are a lot of complementary or alternative treatments that some have found helpful. The Foundation for Peripheral Neuropathy has a lot of information that may be helpful here https://www.foundationforpn.org/living-well/.

Have you looked into any complementary or alternative treatments?

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I had a triple lamenectomy to relieve sciatic nerve issues causing muscle atrophy and numbness in my calves and feet. I have no pain and I work out to build back leg strength. Is there anything that can be done to rehab the feet numbness or support nerve regeneration to aid numbness?

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Hello
I’ve been having pricking pins and needles sensation for the past three months in my hands and legs. All blood tests came back normal except for B6 which was elevated. Doctor asked me to stop it. I’ve been taking acid reflux medicines for many years now. Especially Dexilant. Could this be causing it? I stopped my multi vitamins that had b6 in it. Would love to hear from people who’ve had similar experiences. Thanks much.

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@gowri59

Hello
I’ve been having pricking pins and needles sensation for the past three months in my hands and legs. All blood tests came back normal except for B6 which was elevated. Doctor asked me to stop it. I’ve been taking acid reflux medicines for many years now. Especially Dexilant. Could this be causing it? I stopped my multi vitamins that had b6 in it. Would love to hear from people who’ve had similar experiences. Thanks much.

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I really don't know! My doctor took me off of a medication too for G.E.R.D., which I think it did not help my neuropathy. It was
Omeprazole 20mg in the A.M.
I think you have an excellent questions because so many meds can affect nerve damage, especially in your feet first! I sure hope some can answer this question. I am an amateur and feel I can't answer this question, Although, my Neurologist, suggested my neuropathy can be attributed to some of my numbness. Plaquenil for my Lupus.
Hope this helps someone! Good Luck! Pat K.

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@tomkipp

I had a triple lamenectomy to relieve sciatic nerve issues causing muscle atrophy and numbness in my calves and feet. I have no pain and I work out to build back leg strength. Is there anything that can be done to rehab the feet numbness or support nerve regeneration to aid numbness?

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Hello @tomkipp, Welcome to Connect. I think it's great that you are focusing on building back leg strength. That's also a concern of mine to help with my balance. I also have neuropathy with only numbness and some tingling. I posted my neuropathy journey and what's been helping me in another discussion here - https://connect.mayoclinic.org/comment/310341/. I think you might find the following discussion helpful.

--- Neuropathy: Numbness only, no pain: https://connect.mayoclinic.org/discussion/neuropathy-numbness-only-no-pain/.

I don't have any medical background or training but one of the things that can help support the possibility of healing the nerves is to make sure the skin on your feet and legs doesn't dry out. I rub the legs and feet with a moisturizing lotion daily which doesn't do anything for the numbness but it helps the skin and the nerves are close to the skin.

How long have you had the numbness?

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Hi
I have had feet numbness for 5 or 6 years in both feet and leg muscle atrophy. I was diagnosed with sciatica issues due to stenosis in several locations near the base of the spine. I had a triple laminectomy about 3 years ago to resolve the stenosis and clear the sciatica. However, the sciatica nerve had already been damaged. Since then, I have been working on returning leg strength with a stationary bike and frequent Nautilus machine workouts and the leg strength is pretty good now, but leg stamina isn't good. If I walk 50 or 60 yards, my legs are "tired" and I have to rest. After resting I can do another 50 or 60 yards, etc. The feet numbness is always present and by morning after awakening my feet are really buzzing and "cold"...but no pain. I am trying a "light" device on the spine and just started applying a TENS device to the calves. I frequently use a hot tub and direct the water jets onto the spine and the feet/calves.
I'm looking to find out if there are any other approaches I can try?

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@tomkipp

Hi
I have had feet numbness for 5 or 6 years in both feet and leg muscle atrophy. I was diagnosed with sciatica issues due to stenosis in several locations near the base of the spine. I had a triple laminectomy about 3 years ago to resolve the stenosis and clear the sciatica. However, the sciatica nerve had already been damaged. Since then, I have been working on returning leg strength with a stationary bike and frequent Nautilus machine workouts and the leg strength is pretty good now, but leg stamina isn't good. If I walk 50 or 60 yards, my legs are "tired" and I have to rest. After resting I can do another 50 or 60 yards, etc. The feet numbness is always present and by morning after awakening my feet are really buzzing and "cold"...but no pain. I am trying a "light" device on the spine and just started applying a TENS device to the calves. I frequently use a hot tub and direct the water jets onto the spine and the feet/calves.
I'm looking to find out if there are any other approaches I can try?

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The Foundation for Peripheral Neuropathy has a pretty comprehensive list of treatments if you want to see if any might be worth a try.

-- Complementary Therapies: https://www.foundationforpn.org/living-well/complementary-therapies/
-- This one is included in a link in the above page but it's easy to miss since it's part of the text and doesn't stand out -- Complementary and Alternative Treatments: https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf

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