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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.

Mentor
John, Volunteer Mentor | @johnbishop | May 12 7:27am
In reply to @arcuri24 "Thanks for those tips. I am assuming that the methylcobalamin is an RX item. I am..." + (show)
@arcuri24

Thanks for those tips. I am assuming that the methylcobalamin is an RX item. I am wondering if you exercise and if it helps.

Jump to this post

Actually it's an over the counter supplement. More information:

"Methylcobalamin (MeCbl), the activated form of vitamin B12, has been used to treat some nutritional diseases and other diseases in clinic, such as Alzheimer's disease and rheumatoid arthritis."
-- Methylcobalamin: A Potential Vitamin of Pain Killer: https://pmc.ncbi.nlm.nih.gov/articles/PMC3888748/

REPLY
jamessaxo | @jamessaxo | May 12 4:58pm

Arcuri, yes, run 2.5 k every 2nd day. Gym between. Have to as I am 82. Don't think exercise helps.Don't understand RX. Am going this a.m to buy COBALAMIN in tablet form. Run out of expensive spray. Alcohol stops B12 production. Good luck .

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cecelia19 | @cecelia19 | May 12 5:23pm
In reply to @heisenberg34 "Ain't it the truth. Like you, I had never heard of neuropathy until about eight months..." + (show)
@heisenberg34

Ain't it the truth. Like you, I had never heard of neuropathy until about eight months ago. I had severe pain in my lower back and buttocks from a ski fall in 2016. I got the pain under decent control until 2021 when it came back with a vengeance, sort of out of the blue. We moved to Delaware in 2023. Had to get new docs for Pain Management and PCP. Had a pain pump implanted after an excellent trial. It did not provide any relief. In July of 2024 I had an EMG that showed neuropathy, aka nerve pain. It wasn't until about November of 2024 that the more insidious symptoms began to show up... pain and tingling in extremities. Now, even walking is problematic. I never felt "old" (I'm 77) until these symptoms showed up. Yes. the pain, tingling and whatever is happening at the moment occupies just about every waking moment of my day. We can only hope and pray(seriously, PRAY) that medicine will be able to find some answers to this plague called neuropathy.

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I've been there so understand how this can eclipse everything else in your life. I'm want to let you know that they are developing meds that block specific sodium channels responsible for peripheral nerve pain. One is on the market already and it is called Journax (Suzetripine) and currently approved for acute post surgical pain. I think it is only a matter of time that it will be used for chronic pain as it has a good side effect profile, especially compared to opiates. Unlike those, this bypasses the central nervous system and acts directly to block signals from peripheral nerves.
Other companies are developing their own. It is the first non opiate pain medication to be approved in twenty years, from my understanding. I am currently taking Gabapentin which is helping a lot but hope to be able to reduce the dose and supplement with Suzetripine when available.

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1 reply
heisenberg34 | @heisenberg34 | May 12 8:29pm
In reply to @cecelia19 "I've been there so understand how this can eclipse everything else in your life. I'm want..." + (show)
@cecelia19

I've been there so understand how this can eclipse everything else in your life. I'm want to let you know that they are developing meds that block specific sodium channels responsible for peripheral nerve pain. One is on the market already and it is called Journax (Suzetripine) and currently approved for acute post surgical pain. I think it is only a matter of time that it will be used for chronic pain as it has a good side effect profile, especially compared to opiates. Unlike those, this bypasses the central nervous system and acts directly to block signals from peripheral nerves.
Other companies are developing their own. It is the first non opiate pain medication to be approved in twenty years, from my understanding. I am currently taking Gabapentin which is helping a lot but hope to be able to reduce the dose and supplement with Suzetripine when available.

Jump to this post

Thanks. I have heard a lot about Journyx, both good and bad. Very expensive at the moment. Will be years before s generic version is available.
I am on so many meds, it’s a wonder that I don’t explode(Gabapentin included). Spinal fusion, spinal cord stimulator, pain pump… nothing. The miracles of modern medicine.
Have a great rest of the week.

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andyjustin | @andyjustin | May 13 11:54am

Is metro combo the same as methylene blue? If it is, you can buy it over-the-counter and I’ve been taking it along with NMN and resveratrol the combination of these three is supposed to help with repairing myolin and your mitochondria on a cellular level I really don’t know if it works, but it was recommended to me by multiple people that along with a healthy diet as much as exercises you can get in and very important calm your mind when your mind is constantly thinking of your pain your pain will not go away. Find a diversion

REPLY
1 reply
arcuri24 | @arcuri24 | May 14 11:23am
In reply to @andyjustin "Is metro combo the same as methylene blue? If it is, you can buy it over-the-counter..." + (show)
@andyjustin

Is metro combo the same as methylene blue? If it is, you can buy it over-the-counter and I’ve been taking it along with NMN and resveratrol the combination of these three is supposed to help with repairing myolin and your mitochondria on a cellular level I really don’t know if it works, but it was recommended to me by multiple people that along with a healthy diet as much as exercises you can get in and very important calm your mind when your mind is constantly thinking of your pain your pain will not go away. Find a diversion

Jump to this post

I agree with your advice about finding diversions to get your mind off of the pain. There are also exercise videos on line that deal with neuropathy issues. Strengthening and building muscle for me is very important as I dropped alot of weight with this condition. I am also making dietary modifications--mostly to avoid foods that can cause inflammation. My sweet tooth will have to learn to adapt to the new me.

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andyjustin | @andyjustin | May 14 12:26pm

I know this might sound a little strange, but I still have my sweet tooth. I still have sugar in my coffee. I’m not diabetic so sugar really hasn’t been a problem for me and if it was, I’d be even more depressed when I get depressed which right now I’m not depressed. I’m actually in a really good mood. Feeling really good some days when I get my medicine totally right I mean perfect I don’t even know I have neuropathy but if I miss my medicine, it’s a different world. It’s a very strange disease or condition but I gotta say I love those times. I feel pretty normal. I go about my business. I live my life That’s the best I can ask for hope everybody’s having a good day. Keep in mind right that’s the most important part of this fight.

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andyjustin | @andyjustin | May 14 12:27pm

One last note I thought I’d mention this. I see a lot of people have problems with gabapentin. I’ve never had an issue with it. I guess I’m lucky been on for 2 1/2 three close to three years. My dose is just pretty much leveled out at 1500 mg and a whole hundred

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highdesertdweller | @highdesertdweller | Jun 9 8:11pm

I've recently been hearing a lot about DMSO and it seems to have verified clinical results. Does anyone have experience with this medication? Thank you.

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1 reply
lgort5 | @lgort5 | Jun 11 11:06am

I have suffered from PN for 2 years. I'm 77 years old and I have been on 20mg of pravastatin at bedtime for about 15 years. Could this be the cause if my NP? And what other chlorestrol medications are available that won't aggrevate my NP that I can discuss with my PCP? Thanks

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