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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.

ospreysurf | @ospreysurf | Dec 30, 2018
In reply to @pfbacon "We're all different, aren't we ... gabapentin helped me, calmed my nervous system so it didn't..." + (show)
@pfbacon

We're all different, aren't we ... gabapentin helped me, calmed my nervous system so it didn't cause so much pain, but as my nervous system continued dying I got to the limit of how much gabapentin my doctor would prescribe so he sent me to a neurologist who prefers Lyrica. The first day, it made me sleepy but it doesn't any more. I'm taking 150 milligrams twice a day but it's not working as well as gabapentin did. I took Lyrica CR for 3 months but my insurance company won't pay for it any more. It didn't work as well as gabapentin either. I will see my neurologist as soon as I can and ask what to do. Peggy

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Im sure you know prices are much cheaper than other pharmacies. Rob

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ospreysurf | @ospreysurf | Dec 30, 2018
In reply to @lioness "@carolyn37 Everyone is different for me it wasn't helpful but it may for you ,ask your..." + (show)
@lioness

@carolyn37 Everyone is different for me it wasn't helpful but it may for you ,ask your Dr.

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Another little hint , at night if i cant get to sleep, the worst time for me, i put my feet in a pan of ice and water for maybe 15 minutes and that gives some relief to go to sleep. Rob

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pfbacon | @pfbacon | Dec 30, 2018
In reply to @kruppm "I hope they find a med for you that will really help" + (show)
@kruppm

I hope they find a med for you that will really help

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Thank you! Running helps while I'm doing it - must be those endorphins. Peggy

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1 reply
ospreysurf | @ospreysurf | Dec 30, 2018
In reply to @pfbacon "Thank you! Running helps while I'm doing it - must be those endorphins. Peggy" + (show)
@pfbacon

Thank you! Running helps while I'm doing it - must be those endorphins. Peggy

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That makes sense

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cordy | @cordy | Dec 30, 2018
In reply to @johnbishop "Hello @cordy, welcome to Mayo Clinic Connect. I'm sure the back surgery outcome is not what..." + (show)
@johnbishop

Hello @cordy, welcome to Mayo Clinic Connect. I'm sure the back surgery outcome is not what you expected or hoped for from trying to repair a bad back and ending up with other severe health conditions. I have no experience that I can share but I'm tagging other members @jenniferhunter and @lioness to see if they may have any suggestions or information for you.

Are you on any medications for the new symptoms?

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I take 1200 mg of Gabapentin 2xdaily and 7.7mg of Norco as needed, cymbalta,

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cordy | @cordy | Dec 30, 2018
In reply to @johnbishop "Hello @cordy, welcome to Mayo Clinic Connect. I'm sure the back surgery outcome is not what..." + (show)
@johnbishop

Hello @cordy, welcome to Mayo Clinic Connect. I'm sure the back surgery outcome is not what you expected or hoped for from trying to repair a bad back and ending up with other severe health conditions. I have no experience that I can share but I'm tagging other members @jenniferhunter and @lioness to see if they may have any suggestions or information for you.

Are you on any medications for the new symptoms?

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Thank you for your speedy reply. I take Bacofin, Norco 7.7 mg every 8 hrs., Gabapentin 600 mg 2 tabs twice daily, and Cymbalta.

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1 reply
lioness | @lioness | Dec 30, 2018
In reply to @lioness "@cordy Welcome and thank you John for asking me to chime in Cordy I have a..." + (show)
@lioness

@cordy Welcome and thank you John for asking me to chime in Cordy I have a fractured L2 refused surgery but I can move and the pain is doable with what helps me Ice is an anti inflammatory as well as Golden Milk as @fresh air talked about Back to my neuropathy it's not in my feet but in my thighs as the nerves that go into my legs are affected by my fracture so I have nerve pain and numbness at times .I do naturel stuff like I use a Tens unit on the outside of the body not internal as Jennifer explained I use heat after the ice as heat is bringing blood to the service 15 minutes each ice first .A friend had neuropathy in her feet she said the feet exercises help stretching them Dr had me on Gabapentin but it affected my mental state

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@jenniferhunter I'm sorry I misunderstood the transmitter you where talking about

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1 reply
lioness | @lioness | Dec 30, 2018
In reply to @cordy "Thank you for your speedy reply. I take Bacofin, Norco 7.7 mg every 8 hrs., Gabapentin..." + (show)
@cordy

Thank you for your speedy reply. I take Bacofin, Norco 7.7 mg every 8 hrs., Gabapentin 600 mg 2 tabs twice daily, and Cymbalta.

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@cordy My goodness thats alot of meds I hope your PCP knows all about these meds . Thats important .

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pfbacon | @pfbacon | Dec 31, 2018

My feet are starting to drop. I am paying attention to lifting my knees when I run and walk but I'm forgetting sometimes and tripping/catching it before I fall. I will look into braces that keep feet from dropping. Have any of you tried those? Peggy

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Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | Dec 31, 2018
In reply to @lioness "@jenniferhunter I'm sorry I misunderstood the transmitter you where talking about" + (show)
@lioness

@jenniferhunter I'm sorry I misunderstood the transmitter you where talking about

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@lioness I think you are asking about the Dolphin Neurostimulator that is a device to send an electric current (between 2 devices) which blocks the neurotransmitters (temporarily) and reduces pain. My physical therapist used this on me, and I would have improvement for about a week, not totally pain free, but less pain and less muscle spasms being caused by the spine problem. This was when I needed spine surgery and couldn't find a surgeon who would help me. It is a weird sensation when using it, and there were a few times I felt queasy, but it reduces pain without drugs. Here is the link about it.
https://www.dolphinmps.com/

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