1. < Neuropathy
Moderator

Living with Neuropathy - Welcome to the group

Posted by Colleen Young, Connect Director @colleenyoung, Jul 14, 2017

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.

ronva2co | @ronva2co | Dec 15, 2019

About 3 years ago after trying just about all "pain killers" on the market, i tried both CBD and THC tinctures. The CBD did nothing for me. The THC is taken each evening and if nothing else, i sleep thru the night. I cannot afford to take the THC Tincture throughout the day so i opt for a good night's sleep instead.

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wilcy | @wilcy | Dec 15, 2019
In reply to @rwinney "Hi and welcome! Interesting about the IVIG. Too much of anything can cause damage but there..." + (show)
@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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Your taking some heavy stuff! None worked for me except Kratom! Watch your liver!

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arlenejc | @arlenejc | Dec 15, 2019
In reply to @wilcy "Am taking capsules! Going to switch to powder! Really helps with sleeping good! My daughter is..." + (show)
@wilcy

Am taking capsules! Going to switch to powder! Really helps with sleeping good! My daughter is wanting to use it for back etc! Been cking your online source! Am taking quite a lot! Only been doing this a few weeks! Am scheduled to see another back surgeon the 19 th! Most don’t believe in supplements! I take a lot!

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I had back surgery in 2014. Didn’t do any good and have heard the same from other people.

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Mentor
Chris Trout, Volunteer Mentor | @artscaping | Dec 15, 2019
In reply to @ronva2co "About 3 years ago after trying just about all "pain killers" on the market, i tried..." + (show)
@ronva2co

About 3 years ago after trying just about all "pain killers" on the market, i tried both CBD and THC tinctures. The CBD did nothing for me. The THC is taken each evening and if nothing else, i sleep thru the night. I cannot afford to take the THC Tincture throughout the day so i opt for a good night's sleep instead.

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Good afternoon @ronva2co, I think you are on the right track. First, are you using Medical Cannabis? That is different from Hemp CBD or recreational and even street drugs. CBD actually needs some THC to make if effective for pain management. One company has a dual pack that lets you mix your own. They also give you a chart to go by for the best relief for different presenting pain situations. Let me know if you would like more information on this topic. Be safe and free of suffering. Chris

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arlenejc | @arlenejc | Dec 15, 2019
In reply to @lorirenee1 "@maryv449 I get my Kratom at Happyhippherbals. com You try a slow/low strain, one described as..." + (show)
@lorirenee1

@maryv449 I get my Kratom at Happyhippherbals. com You try a slow/low strain, one described as to help discomfort. I forgot how they exactly describe it, but it is for when you dont feel well. Usually, too, anything called Maeng Da usually works for pain. Kratom is marvelous. The only thing that rids you of pain, without the high of marijuana. Good luck. Lori Renee

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CBD helps pain for some people. It has no THC (marijuana) in it but you can get some CBD with some THC.

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ronva2co | @ronva2co | Dec 15, 2019
In reply to @arlenejc "I had back surgery in 2014. Didn’t do any good and have heard the same from..." + (show)
@arlenejc

I had back surgery in 2014. Didn’t do any good and have heard the same from other people.

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Over the past 10 years, i've had 4 back surgeries and one brain ... 3 other minor surgeries too. I'm in pain 24/7 and nothing seems to help. About a year ago, they implanted a SCS (Spinal Cord Stimulator) and the trial was great, However when the implant was done, it was no where near as good as the trial. I also have Neurogenic Claudication in both legs ... no cure and not much to offer to relieve pain.

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ronva2co | @ronva2co | Dec 15, 2019
In reply to @arlenejc "CBD helps pain for some people. It has no THC (marijuana) in it but you can..." + (show)
@arlenejc

CBD helps pain for some people. It has no THC (marijuana) in it but you can get some CBD with some THC.

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CBD did nothing for me. At night, i use 100% THC Tincture and i sleep thru the night. But cant afford to take it each day so i opt for a good nights sleep.

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Mentor
Rachel, Volunteer Mentor | @rwinney | Dec 15, 2019
In reply to @wilcy "Your taking some heavy stuff! None worked for me except Kratom! Watch your liver!" + (show)
@wilcy

Your taking some heavy stuff! None worked for me except Kratom! Watch your liver!

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Don't remind me. Not happy about it either and trying to get to a point of ommitting one. Just not sure which will be able to be the first one dropped. Definitely plan to keep tabs on my liver as well. Have to.

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ronva2co | @ronva2co | Dec 15, 2019
In reply to @artscaping "Good afternoon @ronva2co, I think you are on the right track. First, are you using Medical..." + (show)
@artscaping

Good afternoon @ronva2co, I think you are on the right track. First, are you using Medical Cannabis? That is different from Hemp CBD or recreational and even street drugs. CBD actually needs some THC to make if effective for pain management. One company has a dual pack that lets you mix your own. They also give you a chart to go by for the best relief for different presenting pain situations. Let me know if you would like more information on this topic. Be safe and free of suffering. Chris

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I use medical and i buy from a dispensary .. no street stuff. I tried mixing CBD and THC but found it to be ineffective. With the THC Tincture, at a minimum i sleep thru the night. I do not smoke it as i dont want to mess with my lungs/breathing. I have a medical card and have tried a couple creams and edibles but i either did not like the effect or they did nothing to help with my pain,

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maryv449 | @maryv449 | Dec 15, 2019
In reply to @ronva2co "Over the past 10 years, i've had 4 back surgeries and one brain ... 3 other..." + (show)
@ronva2co

Over the past 10 years, i've had 4 back surgeries and one brain ... 3 other minor surgeries too. I'm in pain 24/7 and nothing seems to help. About a year ago, they implanted a SCS (Spinal Cord Stimulator) and the trial was great, However when the implant was done, it was no where near as good as the trial. I also have Neurogenic Claudication in both legs ... no cure and not much to offer to relieve pain.

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So sorry for your pain. My friend's son had the same experience with the SCS. I wonder why the trial works and the real deal does not.

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