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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.

peggioh | @peggioh | Nov 11, 2022
In reply to @peggioh "Hi Chris, I can't tell if the LDN is helping, but things are still getting worse,..." + (show)
@peggioh

Hi Chris, I can't tell if the LDN is helping, but things are still getting worse, numbness etc now crawling up my left leg to match the right; however, if I wasn't on it, would it be worse still? In other words, I don't have a "control group" of another me! I haven't tried that Nortriptyline; I've been trying every natural aid under the sun; melatonin, valerian, L-Theonine, homeopathic (joke) so every few days I splurge on just an over the counter one, Unison. From what I understand chemical sleep aids cause rebound effects; do you use the Nor. regularly? I don't typically use topicals, since my primary problem is dead numbness, and static electricity up and down the legs, not outright pain. I have a gabapentin prescription, but haven't taken it, since that isn't going to give me back my feeling, which is the most devastating and troublesome to me. . Thanks for input! PS(By the way, I could give a hoot about protecting my privacy- what's someone going to do, steal my illness?? Go ahead, welcome to it!) haha, but I understand forums are legallybound to privacy.

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Ans pps, I'm happy to hear your nightmares ebbed off, because I've been nervous that mine never will, since most people say after a couple of weeks theirs stop, but mine have been 1 1/2 years.

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1 reply
lidiana | @lidiana | Nov 12, 2022

I’m about to figure it out hopefully with my team if this is what’s causing my pains. But specifically autoimmune polyneuropathy is the one my cardiovascular expert said I should be evaluated for with specialist rheumatologist and a neurologist. I’m concerned about this cuz my pain and symptoms overall have gotten worse. I’m unable to walk, have bumps, red spots and this has honestly been very traumatic for me as I was an active pedagogy professional 🙏🏻 blessings for healing ❤️‍🩹

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annie88 | @annie88 | Nov 12, 2022

Hi all, I have just joined the group and am looking forward to reading some of the info. A car hit me when I was crossing the street and put me in the hospital for a month. This was in 1999. It took me a year to get back on my feet. Neuropathy was present from the beginning. It continues to get worse and I get dizzy when I walk. Does anyone else have that problem ?? I now use a 4 wheel walker to get around. The doctor stopped my gabapentin because it didn't work. Anyone find anything to help the burning in the feet?? Hugs to all. Annie

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3 replies
Mentor
Chris Trout, Volunteer Mentor | @artscaping | Nov 12, 2022
In reply to @peggioh "Ans pps, I'm happy to hear your nightmares ebbed off, because I've been nervous that mine..." + (show)
@peggioh

Ans pps, I'm happy to hear your nightmares ebbed off, because I've been nervous that mine never will, since most people say after a couple of weeks theirs stop, but mine have been 1 1/2 years.

Jump to this post

Good evening @peggioh, thanks for responding. Let's see where we are in our sharing and where we may be able to go from here.

About those nightmares, are you being attacked or injured? Are you attacking someone yourself? Do they always start the same way? I haven't done any dream analysis in ages so I am not confident about the causes in the first place or the reasons that they exit. I was beaten by my husband at the time and ended up in the ER on several occasions. That may be why the nightmares took so long to leave me alone. Although I remember the issues, I have never had another dream.

So....let's uncover another option to consider and one I have been actively pursuing for 10 years. After being diagnosed with SFN, one of my nurse friends introduced me to Medical Cannabis. For example, I replaced the Nortriptyline with a tincture dosage composed of 2:1 CBD/THC. Taken about 45 minutes before bedtime, it helps me fall asleep and stay asleep until morning. No longer do my SFN symptoms keep me awake at night or wake me up early in the morning.

For daytime control of the numbness and pain, I use a 1:1 CBD/THC tincture. I also use either a 1:3 CBD/THC topical for acute discomfort on my hands, wrists, and sometimes feet or a 3:1 CBD/THC for the chronic daily situation with my hands in particular.

Have you tried any medical cannabis? Do you live where it is legally and readily available?

May you be free of suffering and the causes of suffering.
Chris

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3 replies
betty1952 | @betty1952 | Nov 13, 2022
In reply to @artscaping "Good evening @peggioh, thanks for responding. Let's see where we are in our sharing and where..." + (show)
@artscaping

Good evening @peggioh, thanks for responding. Let's see where we are in our sharing and where we may be able to go from here.

About those nightmares, are you being attacked or injured? Are you attacking someone yourself? Do they always start the same way? I haven't done any dream analysis in ages so I am not confident about the causes in the first place or the reasons that they exit. I was beaten by my husband at the time and ended up in the ER on several occasions. That may be why the nightmares took so long to leave me alone. Although I remember the issues, I have never had another dream.

So....let's uncover another option to consider and one I have been actively pursuing for 10 years. After being diagnosed with SFN, one of my nurse friends introduced me to Medical Cannabis. For example, I replaced the Nortriptyline with a tincture dosage composed of 2:1 CBD/THC. Taken about 45 minutes before bedtime, it helps me fall asleep and stay asleep until morning. No longer do my SFN symptoms keep me awake at night or wake me up early in the morning.

For daytime control of the numbness and pain, I use a 1:1 CBD/THC tincture. I also use either a 1:3 CBD/THC topical for acute discomfort on my hands, wrists, and sometimes feet or a 3:1 CBD/THC for the chronic daily situation with my hands in particular.

Have you tried any medical cannabis? Do you live where it is legally and readily available?

May you be free of suffering and the causes of suffering.
Chris

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I see that the cbd gummies with thc are being advertised in a newspaper ad here at a small WI town. It also covers MN so we don't know if it is only legal in MN or here as well. My kids have all warned me it is NOT legal here, while my older relatives say it has to be if it is in the newspaper. I ran it by my kids again and they said "don't do it, mom". I told my older relative that I'd have to hear it from a lawenforcement officer before I'd believe it. I'd love to not need non-natural pain relievers anymore. LOL.. kids still shaking their heads "NO" at me when I point to the ad.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Nov 13, 2022
In reply to @annie88 "Hi all, I have just joined the group and am looking forward to reading some of..." + (show)
@annie88

Hi all, I have just joined the group and am looking forward to reading some of the info. A car hit me when I was crossing the street and put me in the hospital for a month. This was in 1999. It took me a year to get back on my feet. Neuropathy was present from the beginning. It continues to get worse and I get dizzy when I walk. Does anyone else have that problem ?? I now use a 4 wheel walker to get around. The doctor stopped my gabapentin because it didn't work. Anyone find anything to help the burning in the feet?? Hugs to all. Annie

Jump to this post

Hi Annie @annie88, Welcome to Connect. It must be difficult dealing with the pain and neuropathy since getting out of the hospital in 1999. Do the doctors think that being hit by the car damaged nerves in your neck and spine?

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1 reply
artsyseven | @artsyseven | Nov 13, 2022

Has anyone woke in the night with tingling in your upper body including the heart area, arms, neck, and head?
When I have had stress in the daytime I have had this in the night. It has made me wake up. This is in addition to the usual
feet and legs tingling,

REPLY
peggioh | @peggioh | Nov 13, 2022
In reply to @artscaping "Good evening @peggioh, thanks for responding. Let's see where we are in our sharing and where..." + (show)
@artscaping

Good evening @peggioh, thanks for responding. Let's see where we are in our sharing and where we may be able to go from here.

About those nightmares, are you being attacked or injured? Are you attacking someone yourself? Do they always start the same way? I haven't done any dream analysis in ages so I am not confident about the causes in the first place or the reasons that they exit. I was beaten by my husband at the time and ended up in the ER on several occasions. That may be why the nightmares took so long to leave me alone. Although I remember the issues, I have never had another dream.

So....let's uncover another option to consider and one I have been actively pursuing for 10 years. After being diagnosed with SFN, one of my nurse friends introduced me to Medical Cannabis. For example, I replaced the Nortriptyline with a tincture dosage composed of 2:1 CBD/THC. Taken about 45 minutes before bedtime, it helps me fall asleep and stay asleep until morning. No longer do my SFN symptoms keep me awake at night or wake me up early in the morning.

For daytime control of the numbness and pain, I use a 1:1 CBD/THC tincture. I also use either a 1:3 CBD/THC topical for acute discomfort on my hands, wrists, and sometimes feet or a 3:1 CBD/THC for the chronic daily situation with my hands in particular.

Have you tried any medical cannabis? Do you live where it is legally and readily available?

May you be free of suffering and the causes of suffering.
Chris

Jump to this post

Dear Chris, thank you for the insights. The nightmares usually involve a deadly pursuit of ME, but then occasionally a gory fight back From me. But even the regular dreams are painfully intense ("vivid"), so much so I wonder how much rest I'm even getting while sleeping! (Such as can't find-your-car-in-parking-lot scenarios, (2 night in a row), relationship angst, etc.)
I've never tried medical cannabis, but yes, it's legal in Massachusetts, and maybe I'll ask my doctor to prescribe some. Peggy

REPLY
bonniethompson1234 | @bonniethompson1234 | Nov 13, 2022
In reply to @annie88 "Hi all, I have just joined the group and am looking forward to reading some of..." + (show)
@annie88

Hi all, I have just joined the group and am looking forward to reading some of the info. A car hit me when I was crossing the street and put me in the hospital for a month. This was in 1999. It took me a year to get back on my feet. Neuropathy was present from the beginning. It continues to get worse and I get dizzy when I walk. Does anyone else have that problem ?? I now use a 4 wheel walker to get around. The doctor stopped my gabapentin because it didn't work. Anyone find anything to help the burning in the feet?? Hugs to all. Annie

Jump to this post

Gabapentin helps me a bit but duloxitine gave me much more relief from the pain. I still have numbness. I just started using LifeFlo magnesium lotion on my legs and feet. It is soothing but again no relief from numbness. It’s only two days so I’m hoping it will kick in to help more. In the beginning I had burning in my feet. Now it’s just pain. I try to soak them often in Epsom salts which again has magnesium in it. An old fashioned helper for pain. Hoping you find something to help you ease your pain. God bless.

REPLY
1 reply
bonniethompson1234 | @bonniethompson1234 | Nov 13, 2022
In reply to @bonniethompson1234 "Gabapentin helps me a bit but duloxitine gave me much more relief from the pain. I..." + (show)
@bonniethompson1234

Gabapentin helps me a bit but duloxitine gave me much more relief from the pain. I still have numbness. I just started using LifeFlo magnesium lotion on my legs and feet. It is soothing but again no relief from numbness. It’s only two days so I’m hoping it will kick in to help more. In the beginning I had burning in my feet. Now it’s just pain. I try to soak them often in Epsom salts which again has magnesium in it. An old fashioned helper for pain. Hoping you find something to help you ease your pain. God bless.

Jump to this post

Also I find I can’t walk well in certain shoes. Skechers and crocs give support in the right places and both help me.

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