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?

@dawn67

I was just diagnosed with neuropathy. I’m in a lot of pain with numbness, tingling etc. I know it’s due to my alcoholism and have stopped drinking. What can I do outside of prescribed meds to give me a little comfort with the aches, pains tingling, etc. Since this is so new to me, I’m looking for some facts before I deal with the emotional side of it.

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I have had neuropathy for 6 years now so I can relate to what you are going through. I have found that CBD salves help more than anything else on my feet. There are different strengths so I suggest giving those a try.

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@arlenejc

I have had neuropathy for 6 years now so I can relate to what you are going through. I have found that CBD salves help more than anything else on my feet. There are different strengths so I suggest giving those a try.

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Use red Kratom! It’s a plant supplement! Only thing working for my neuropathy!

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@wilcy

Use red Kratom! It’s a plant supplement! Only thing working for my neuropathy!

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Where do you get it? Please share this.

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@maryv449

Where do you get it? Please share this.

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I get mine at marijuana dispensary! The red Kratom is for pain! It is working! Don’t know if you can get at health food store! This is not marijuana ! Have tried shots, Gabapentin etc for my periferal neuropathy! Did nothing for pain! I live in Oklahoma! This is working!

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Hello Everyone!
Thanks for your welcome. I’ve had neuropathic pain since 2014 due a Spinal Cord Stroke at the T3 in July. As a result I’m unable to feel temperature of hot and cold and physical pain. It’s exhausting right now but God is my only Strength.

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@pen

Hello Everyone!
Thanks for your welcome. I’ve had neuropathic pain since 2014 due a Spinal Cord Stroke at the T3 in July. As a result I’m unable to feel temperature of hot and cold and physical pain. It’s exhausting right now but God is my only Strength.

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Hello @pen, Welcome to Connect. You are not alone in your struggle with neuropathy. I was not familiar with a spinal cord stroke until I read the following article in Medical News Today.

Spinal stroke: Causes, treatment, and outcome
https://www.medicalnewstoday.com/articles/322459.php

There is another discussion on Connect that you might find helpful here:

> Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Did your doctor suggest a treatment plan or therapy?

Liked by Retired Teacher

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@wilcy

I get mine at marijuana dispensary! The red Kratom is for pain! It is working! Don’t know if you can get at health food store! This is not marijuana ! Have tried shots, Gabapentin etc for my periferal neuropathy! Did nothing for pain! I live in Oklahoma! This is working!

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@wilcy Hi. I think we have talked before. I have severe peripheral neuropathy, and so far, I feel Kratom works way better than anything for pain, if you find the right strain. I buy mine on line from Happyhippoherbals.com I chose them after lots of research because they have been approved by the American Kratom Society for the purity of their products. There are no contaminants. pesticides. salmonella, etc. I pick the "low strains," that they say is for something like body discomfort, well being. They do not come out and say it is for pain, but my oh my, I am utterly pain free from the right choices. I do not take it everyday, as it is addictive. I take it no more than about 3 days a week, tops. But I like it because it is just relaxing, and does not make me feel high. And all pain leaves for maybe 3 hours or so. I take it twice in one day, usually. I take about 5 grams a serving. I seem to need a lot to feel it. Anyway, thought I would share. The stuff is vile, but I swig it down, and laugh. Really disgusting, but a miracle for pain. Lori Renee

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Hello Lorie, have tried everything known to man for my spinal stenosis with neuropathy! I saw on one of these sites about a guy getting good results with it! I am using Bali Kratom! I take atleast 8 grams a day! I can walk a lot farther and actually go to stores! Surgery did nothing! Doctors afraid to prescribe any strong medication! , cya! Medical marijuana makes me want to be couch potato! Good for pain but I don’t like getting high! Yes, you have to take a lot of Kratom for good results! Am 68 and could care less about becoming addicted! Wierd, this is only thing I have found to work! Good for depression, anxiety and a lot more! Neuropathy is hell! I’m just trying to help people like us! Might not work for everyone, does for me! Keep in touch!

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Thanks fir welcoming me. I have had cidp for 16 years, my neuropathy is unexplained…have been thru all the tests they found no cause. I have since developes diabetes 2 and of course the pain has increases. I took IVIG treatments for almost 9 years, the dr decided i was at a stand still and took me off for fear of liver problems. I have since gone thru all tje pain drugs and am currently on tramadol twice a day as well as 3600 mg gabapentin daily
as well as dulexotein . i was taking 8 50mg tramadol a day and now the all knowing insurance has cut me down to 2 a day. I have all the numbness, tingling, fire, freezing, ants biting, knives stabing, rubber bands snapping , you name it i have it from my toes to just iver my knees and my fingers to my wrists. It is a slow death. I am seeing a new neurologist on thrusday to see if he can do anything for me. Cbd salve helps for a couple if days then it doesnt. I gave even tried oxycodine that was prescribed to be during a knee procedure dudnt help much. I have a bad knee and a bad hip, but am scared to desth on how the surgery will affect my body. You may think i am an old person, well i am only 62 so age was not a defining contributor…..any one have any ideas???

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Try Bali Kratom! Working for me! It’s a supplement

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@wilcy

Hello Lorie, have tried everything known to man for my spinal stenosis with neuropathy! I saw on one of these sites about a guy getting good results with it! I am using Bali Kratom! I take atleast 8 grams a day! I can walk a lot farther and actually go to stores! Surgery did nothing! Doctors afraid to prescribe any strong medication! , cya! Medical marijuana makes me want to be couch potato! Good for pain but I don’t like getting high! Yes, you have to take a lot of Kratom for good results! Am 68 and could care less about becoming addicted! Wierd, this is only thing I have found to work! Good for depression, anxiety and a lot more! Neuropathy is hell! I’m just trying to help people like us! Might not work for everyone, does for me! Keep in touch!

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@wilcy Thanks for writing to me! I am really surprised more people do not try Kratom. The stuff is a miracle. It really resonated with me that at 68 years old, you really don't care about the addictive qualities of Kratom. I have actually thought about that, as I am also 68 years old, and it's like, who cares? My only problem is that it may be raising my blood pressure, but I am not absolutely sure of this. It also does make your mood very good, without making you high. The stuff really works! Do you take the powdered form, or capsules? I take the powder, swig it down, and shudder. Neuropathy is a relentless bitch of an illness. My pain doctor has offered a Dorsal Root Ganglion stimulator, that can target exactly what nerves need targeting. But to me, that is scarey stuff. You cannot have an MRI if you need one, once it is implanted. Next week, I will be getting vitamin B12 injections. God knows if they will help the feet. Anyway, I feel blessed to have researched Kratom, and tried it. To me, it is absolutely the only thing that works!!! Keep in touch, Lori

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@ginthert

Thanks fir welcoming me. I have had cidp for 16 years, my neuropathy is unexplained…have been thru all the tests they found no cause. I have since developes diabetes 2 and of course the pain has increases. I took IVIG treatments for almost 9 years, the dr decided i was at a stand still and took me off for fear of liver problems. I have since gone thru all tje pain drugs and am currently on tramadol twice a day as well as 3600 mg gabapentin daily
as well as dulexotein . i was taking 8 50mg tramadol a day and now the all knowing insurance has cut me down to 2 a day. I have all the numbness, tingling, fire, freezing, ants biting, knives stabing, rubber bands snapping , you name it i have it from my toes to just iver my knees and my fingers to my wrists. It is a slow death. I am seeing a new neurologist on thrusday to see if he can do anything for me. Cbd salve helps for a couple if days then it doesnt. I gave even tried oxycodine that was prescribed to be during a knee procedure dudnt help much. I have a bad knee and a bad hip, but am scared to desth on how the surgery will affect my body. You may think i am an old person, well i am only 62 so age was not a defining contributor…..any one have any ideas???

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I am sorry you are in so much pain, i wish i had some magic answers but i don't. I do put foot creme on at night and it does cool my feet off and takes away the burning needle feeling. Otherwise I just try to stay active, best wishes to you, I hope you find relief soon.

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@maryv449

Where do you get it? Please share this.

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@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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@lorirenee1

@wilcy Thanks for writing to me! I am really surprised more people do not try Kratom. The stuff is a miracle. It really resonated with me that at 68 years old, you really don't care about the addictive qualities of Kratom. I have actually thought about that, as I am also 68 years old, and it's like, who cares? My only problem is that it may be raising my blood pressure, but I am not absolutely sure of this. It also does make your mood very good, without making you high. The stuff really works! Do you take the powdered form, or capsules? I take the powder, swig it down, and shudder. Neuropathy is a relentless bitch of an illness. My pain doctor has offered a Dorsal Root Ganglion stimulator, that can target exactly what nerves need targeting. But to me, that is scarey stuff. You cannot have an MRI if you need one, once it is implanted. Next week, I will be getting vitamin B12 injections. God knows if they will help the feet. Anyway, I feel blessed to have researched Kratom, and tried it. To me, it is absolutely the only thing that works!!! Keep in touch, Lori

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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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@ginthert

Thanks fir welcoming me. I have had cidp for 16 years, my neuropathy is unexplained…have been thru all the tests they found no cause. I have since developes diabetes 2 and of course the pain has increases. I took IVIG treatments for almost 9 years, the dr decided i was at a stand still and took me off for fear of liver problems. I have since gone thru all tje pain drugs and am currently on tramadol twice a day as well as 3600 mg gabapentin daily
as well as dulexotein . i was taking 8 50mg tramadol a day and now the all knowing insurance has cut me down to 2 a day. I have all the numbness, tingling, fire, freezing, ants biting, knives stabing, rubber bands snapping , you name it i have it from my toes to just iver my knees and my fingers to my wrists. It is a slow death. I am seeing a new neurologist on thrusday to see if he can do anything for me. Cbd salve helps for a couple if days then it doesnt. I gave even tried oxycodine that was prescribed to be during a knee procedure dudnt help much. I have a bad knee and a bad hip, but am scared to desth on how the surgery will affect my body. You may think i am an old person, well i am only 62 so age was not a defining contributor…..any one have any ideas???

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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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