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?

My main concern is how many days I have left in this life And whether wifi and the energy of electricity as emitted by our smart phones and other devices are wholly or partially responsible for this horrible and most unfortunate disease

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Pain

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@mcgatt

My main concern is how many days I have left in this life And whether wifi and the energy of electricity as emitted by our smart phones and other devices are wholly or partially responsible for this horrible and most unfortunate disease

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You ok?

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In reply to @arlenejc "Pain" + (show)
@arlenejc

Try Kratom

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@wilcy

Try Kratom

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Kratom? And what is that? Thanx

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@rwinney

Hi and welcome! Interesting about the IVIG. Too much of anything can cause damage but there really does have to be a point of choosing our battles considering we do need to live now in comfort as best we can. I'm 3 years in and continue to search. It's troubling to think that at my age (46 when srarted) of the long term damage but being between a rock and a hard place I've found that my Hydrocodone, Lyrica, Duloxetine and a ton of supplements need addition help to control my pain. It was lidocaine infusions until they stopped working. My Neurologist has plasmapherisis and IVIG as additional treatments in future. As of now I'm choosing CBD and THC tincture as the add on to the my other treatment plan. Exhausting isn't it? Maybe try Kratom…It's being discussed more in this forum. I wish you luck and hope you can find more comfort in this crazy journey. Be well.
Rachel

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Yes i am going to look into kranton. If you have the means definately go for the ivig treatments, they kept me going for years. I started with a treatment every 6 weeks and at the end was getting a treatment every week… Yes and i was 46 when all this crap started

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@ginthert

Yes i am going to look into kranton. If you have the means definately go for the ivig treatments, they kept me going for years. I started with a treatment every 6 weeks and at the end was getting a treatment every week… Yes and i was 46 when all this crap started

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Kranton is a hospital?

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In reply to @arlenejc "Pain" + (show)
@arlenejc

Not really ok. Daylight hours I can deal with it. But night the neuropathy episodes are so difficult. Seems the numness in the feet are.just too much to bear until the morning brings the light. At 72 years…one deals with it and wishes only completion and integrity

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@mcgatt

Kranton is a hospital?

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Its a supplement! Google it! Only thing working for neuropathy! Tried them all ! Good luck

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@mcgatt

Not really ok. Daylight hours I can deal with it. But night the neuropathy episodes are so difficult. Seems the numness in the feet are.just too much to bear until the morning brings the light. At 72 years…one deals with it and wishes only completion and integrity

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@mcgatt – I suffer from burning feet, so it never occurred to me that having numbness in your feet would keep you awake! May I ask why? I mean – isn't numbness the absence of feeling?

Liked by Leonard

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@iceblue

@mcgatt – I suffer from burning feet, so it never occurred to me that having numbness in your feet would keep you awake! May I ask why? I mean – isn't numbness the absence of feeling?

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Hello @mcgatt, I would like to add my welcome to Connect along with the other members. I also have the numbness with my feet. I've had my small fiber peripheral neuropathy for over 20+ years (76 now). I don't think numbness is an absence of feeling but rather a different kind of feeling and just not pain, burning, etc.. You mentioned the numbness keeping you awake at night. Is it the pressure on your feet from the blankets or sheet?

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@iceblue

@mcgatt – I suffer from burning feet, so it never occurred to me that having numbness in your feet would keep you awake! May I ask why? I mean – isn't numbness the absence of feeling?

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Believe me the two sensations can co-exist. My neurologist explained it to me but I didn't understand even then.

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@mcgatt

Kranton is a hospital?

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No its a supplement

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@mcgatt

Kranton is a hospital?

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@mcgatt you might want to read the post by @colleenyoung to learn more about Kratom and possible side effects.
https://connect.mayoclinic.org/discussion/intractable-pain-ip-doctors/?pg=1#comment-316645

Liked by johnhans

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@ginthert

Yes i am going to look into kranton. If you have the means definately go for the ivig treatments, they kept me going for years. I started with a treatment every 6 weeks and at the end was getting a treatment every week… Yes and i was 46 when all this crap started

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Good to know, thanks. I'm beginning Medicare in 2020 and Neuro said no way will they cover IVIG without a major fight. All so interesting. Time will tell.

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