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.

@avmcbellar

Hi Sunny, i like to eat spinach in raw form by adding a small amount in a salad. I sometimes add it raw to an already boiled soup. It won’t take long to wilt in the hot soup. Have you tried using raw spinach as one of the ingredients in a smoothie? That can be a meal in itself. I use the internet to find recipes to try. Find one you like the ingredients. There are many using healthy fruits and veggies like kale or even avocado. Make what you can tolerate. Good luck! Toni

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@avmcbellar, @sunnyflower, I eat a lot of raw spinach too as well as using it in stir fry, omelets, breakfast burritos and smoothies. I can't taste the spinach, kale or swiss chard in smoothies and find it a very versatile, mild green veggie. It can be creamed or added to pasta sauces and casseroles as well.

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@fiesty76

@avmcbellar, @sunnyflower, I eat a lot of raw spinach too as well as using it in stir fry, omelets, breakfast burritos and smoothies. I can't taste the spinach, kale or swiss chard in smoothies and find it a very versatile, mild green veggie. It can be creamed or added to pasta sauces and casseroles as well.

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Thank you for the great ideas! Hope today is a much better day for you. Many blessings, Sunny flower

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@artist01

Toni, I totally agree with your comments about walkers. I've tried them all, and my four-wheeler is the very best!

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Funny how we learned from experience using the different walkers. I can say that going back to my original walker would be a health hazard and not worth the fall risk.

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@user_che214927

Good luck with best wishes. I have settled for Neuroplasticity. It works and I have a high expectation of a final cure. Nil medication of any description.

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Hi Barry, I was just reading about Michael Moskowitz and his neuroplasticity theory on pain maps. I haven’t researched it at all, just wondering if you’re familiar with him and his ideas and what your thoughts might be. Helen

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@fiesty76

@avmcbellar, @sunnyflower, I eat a lot of raw spinach too as well as using it in stir fry, omelets, breakfast burritos and smoothies. I can't taste the spinach, kale or swiss chard in smoothies and find it a very versatile, mild green veggie. It can be creamed or added to pasta sauces and casseroles as well.

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Thanks @fiesty76 for suggesting other ways to use spinach. There are multiple recipes, even spinach pie. Something for everyone. I always try different greens and not stick to one for a variety in taste and nutrition. Lol, my bunnies like that too. I share raw veggies, greens, and herbs with them. Nothing goes to waste here.

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@avmcbellar

Hi Sunny, i like to eat spinach in raw form by adding a small amount in a salad. I sometimes add it raw to an already boiled soup. It won’t take long to wilt in the hot soup. Have you tried using raw spinach as one of the ingredients in a smoothie? That can be a meal in itself. I use the internet to find recipes to try. Find one you like the ingredients. There are many using healthy fruits and veggies like kale or even avocado. Make what you can tolerate. Good luck! Toni

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Toni, thx for the info. What juicer or smoothie maker do you recommend? I do look online for recipes etc. all the time. I appreciate your help and patience. Warmest wishes, Sunnyflower 🤗

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@helennicola

Hi Barry, I was just reading about Michael Moskowitz and his neuroplasticity theory on pain maps. I haven’t researched it at all, just wondering if you’re familiar with him and his ideas and what your thoughts might be. Helen

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Michael was advocating many forms of medications to to overcome , but after much more research and admitted, to his credit be became a great believer of neuroplasticity, as I do . I you look at my previous post on two books on the on th book by Norman Doidge . Michael is one of the pioneers who accepted the brain is not static, but plastic. I recommend you buy his first 'The brain that changes itself" not only read but research thoroughly. It covers the stories of great people who reached the same conclusions as Michael .

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@user_che214927
I hope you'll keep us informed as to your progress.
Fingers crossed,
Jake

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@jakedduck1

@sunnyflower
Here are some seizure meds that can cause Neuropathy.

Dilantin/Phenytoin
Phenobarbital
Tegretol/Carbamazepine
Depacote/Valproic acid
Trileptal, Oxtellar XR/Oxcarbazepine
Lamictal/Lamotrigine

I believe that Neurontin/Gabapentin may also contribute to Neuropathy just like some seizure meds have increased seizures in some people.

Take care,
Jake

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Hi Jake, thanks for the info. The Gabapentin definitely helps me get through my pain aka tolerate it, but doesn't eliminate it. It really messes with my balance and having proprioception doesn't help. I have a lot of the unwanted side effects of it but everytime I try to decrease my dose, my pain intensifies.
When I read what you have been through and go through in life, it confounds my mind bc it's too much for a human to bear alone. It siunds like you walk closely to our precious Lord. That is the only thing that gets me through as you probably have read many times on my post.

Just knowing our almighty God intimately and understanding He has a purpose and plan for my life, is what gets me through. I am in the presence of Holiness at all times and experienced His peace through Christ that surpasses understanding (Philippians 4:7) and His comfort. I know that this present suffering cannot be compared to the glory we will see in His time. Romans 8:18.

In Christ's unfathomable love, Sunny 🙏♥️

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@sunnyflower

Toni, thx for the info. What juicer or smoothie maker do you recommend? I do look online for recipes etc. all the time. I appreciate your help and patience. Warmest wishes, Sunnyflower 🤗

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Sunny, you’re welcome. I use a simple blender(Oster). To be able to make just a single portion my kids use The Bullet. A never used a juicer. Besides it being more expensive, it takes all the fiber away and leaves only the juice. The fiber is good to include from foods too. The juice not only contains nutrients but also the sugary stuff. The fiber helps to not digest all the sugar.

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