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.

Mentor
Rachel, Volunteer Mentor | @rwinney | Jan 26, 2020
In reply to @jimhd "@rwinney I have tried Nortriptyline but it didn't help the pain. Back in the past I..." + (show)
@jimhd

@rwinney I have tried Nortriptyline but it didn't help the pain. Back in the past I took Amitriptyline for TMJ, and it kicked in quickly. I had been having severe pain in my cheeks and sinuses for a year, most likely due to the stress of working with an abusive boss.

Jim

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Ok, thank you.

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Mentor
Rachel, Volunteer Mentor | @rwinney | Jan 26, 2020
In reply to @tigreyes2004 "Hi I tried Nortriptyline & it did help my pain but I got so constipated from..." + (show)
@tigreyes2004

Hi
I tried Nortriptyline & it did help my pain but I got so constipated from it that I had to stop it. That was the only med that helped me with my pain. I take Gabapentin at a low dose of 500 mg of day. I take 300 mg at night & 100 mg 2 times during the day. That is so that it don't make me so tired. I also take the duloxetine. How come you are trying to get off of it?

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Duloxetine does nothing for my pain. I stayed on it to help with anxiety but am now finding that help from CBD oil.

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lisash | @lisash | Jan 26, 2020

Took a break from CBD today. As friday I was struggling to stay awake all day and all evening to 7 p.m.
I feel refreshed. Even my pain gave me the day a break. It is probably in shock. I will continue using it. But maybe that one is for night time.
It is 1100 mg. W-THC.
I will go back and try the 500 mg. No THC for day time.
Crossing my fingers.
I hope you use it more wisely than I did.

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margaretob | @margaretob | Jan 27, 2020

Peripheral Neuropathy has my left leg and runs extremely painful races into my thigh and down into my left foot. My hands cripple up and get cold as do my feet. It is 73 degrees in here and I have icy feet and hands! Aspirin and exercise slow it down some, but it races again and it is extremely painful. CHARLEY HORSES AT NIGHT KEEP ME AWAKE....SAW the clinic here, DOCTOR gave me GABAPENTIN 50 mgs. to take at night. DOES NOTHING....have an appointment with a NEUROPATHIC DOCTOR tomorrow. I am in HOBOKEN and have MEDICARE and am 75 with DIABETES since 1994 on INSULIN....

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Mentor
John, Volunteer Mentor | @johnbishop | Jan 27, 2020
In reply to @margaretob "Peripheral Neuropathy has my left leg and runs extremely painful races into my thigh and down..." + (show)
@margaretob

Peripheral Neuropathy has my left leg and runs extremely painful races into my thigh and down into my left foot. My hands cripple up and get cold as do my feet. It is 73 degrees in here and I have icy feet and hands! Aspirin and exercise slow it down some, but it races again and it is extremely painful. CHARLEY HORSES AT NIGHT KEEP ME AWAKE....SAW the clinic here, DOCTOR gave me GABAPENTIN 50 mgs. to take at night. DOES NOTHING....have an appointment with a NEUROPATHIC DOCTOR tomorrow. I am in HOBOKEN and have MEDICARE and am 75 with DIABETES since 1994 on INSULIN....

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Hello @margaretob, welcome to Mayo Clinic Connect. I know it must be hard not being able to sleep because of the leg cramps. Hoping you can find some answers or suggestions from other members. I have occasionally had leg cramps at night but it's always due to not drinking enough water for me. Here is another discussion that you may want to read through and learn what has helped other members:

> Groups > Sleep Health > Restless Leg Syndrome
— https://connect.mayoclinic.org/discussion/restless-leg-syndrome-2a74e5/

Here's what Mayo Clinic has to say about leg cramps https://www.mayoclinic.org/diseases-conditions/muscle-cramp/symptoms-causes/syc-20350820

Can you let us know how your appointment with the neuropathic doctor goes? Hopefully you will get some answers.

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Mentor
Rachel, Volunteer Mentor | @rwinney | Jan 27, 2020
In reply to @margaretob "Peripheral Neuropathy has my left leg and runs extremely painful races into my thigh and down..." + (show)
@margaretob

Peripheral Neuropathy has my left leg and runs extremely painful races into my thigh and down into my left foot. My hands cripple up and get cold as do my feet. It is 73 degrees in here and I have icy feet and hands! Aspirin and exercise slow it down some, but it races again and it is extremely painful. CHARLEY HORSES AT NIGHT KEEP ME AWAKE....SAW the clinic here, DOCTOR gave me GABAPENTIN 50 mgs. to take at night. DOES NOTHING....have an appointment with a NEUROPATHIC DOCTOR tomorrow. I am in HOBOKEN and have MEDICARE and am 75 with DIABETES since 1994 on INSULIN....

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Hello. I'm so sorry to hear about your pain and discomfort. Your Gabepentin is starting very low and the hardest part is having patience while the dose increases to help you. Stay strong through your struggles. Thoughts are with you. -Rachel

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ninac | @ninac | Jan 27, 2020

Thank You Rachel. I just moved from Oahu to the Big Island HA. I have an appointment 2/27 with New Doctor and an going to discuss treatments ect. with him. Just retired from 40 some years as a Cashier and refuse to let this define my retirement years!

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Mentor
Rachel, Volunteer Mentor | @rwinney | Jan 27, 2020
In reply to @ninac "Thank You Rachel. I just moved from Oahu to the Big Island HA. I have an..." + (show)
@ninac

Thank You Rachel. I just moved from Oahu to the Big Island HA. I have an appointment 2/27 with New Doctor and an going to discuss treatments ect. with him. Just retired from 40 some years as a Cashier and refuse to let this define my retirement years!

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That's a great attitude! Keep on, keepin' on.

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Mentor
Chris Trout, Volunteer Mentor | @artscaping | Jan 27, 2020
In reply to @rwinney "Hi Jim My PCP wants me to try Nortriptyline for added pain relief. I am already..." + (show)
@rwinney

Hi Jim

My PCP wants me to try Nortriptyline for added pain relief. I am already weaning off Duloxetine so once that's done, I will start Nortriptyline. We are scraping the bottom of the barrel. I'm going to run this idea past my neurologist as well during my 2/6 visit. Have you Jim, or anyone else, used Nortriptyline and found success? Seems like I'm quite past this drug but, I'm no Dr.

In other news...my blood testing reveals continued high copper levels, which have been high for a year now. Neuro is sending me to a gastroenterologist to rule out any liver problems. Also, I'm below threshold on Aldolase and Alkaline phos. MCV is a little over threshold.

At this point low B12 is supposedly the blame of my SFPN, which has been pretty devastating to my life, therefore, I underestimate nothing.

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Hi Rachel, @rwinney, I like your statement....."seems like I'm quite past this drug". I began to feel the same way. Nortriptyline was very helpful for me when I was trying to accept my lot in life......coping with neuropathy. The depression was becoming more and more impacted by suicide ideation. This medication did its job and now there is a joy to be found in every day.

My PCP felt that it was an older medication that I no longer needed. I was using mindful meditation as a daily solution to depression and experiencing uncontrollable constipation which I now know was attributable to the nortriptyline. My PCP and I made a shared decision: replace the Nortriptyline on a graduated taper with a tincture of 1:1 CBD/THC. It has been 4 months and I am finally free of taper symptoms and an anti-depressant which did its job and was no longer needed.

So what is next? Duloxetine. I am going to wait for you Rachel, to finish your duloxetine taper so that I can benefit from your experience. I am currently researching substitutes.

Isn't this a wonderful thing about Connect........we share and support each other..........giving us access to ever so much information from an up-close and personal source.....other members. I want to thank all of you who have shared your taper experiences. You have helped me and I am very grateful. Be free of suffering. Chris

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Mentor
Rachel, Volunteer Mentor | @rwinney | Jan 27, 2020
In reply to @artscaping "Hi Rachel, @rwinney, I like your statement....."seems like I'm quite past this drug". I began to..." + (show)
@artscaping

Hi Rachel, @rwinney, I like your statement....."seems like I'm quite past this drug". I began to feel the same way. Nortriptyline was very helpful for me when I was trying to accept my lot in life......coping with neuropathy. The depression was becoming more and more impacted by suicide ideation. This medication did its job and now there is a joy to be found in every day.

My PCP felt that it was an older medication that I no longer needed. I was using mindful meditation as a daily solution to depression and experiencing uncontrollable constipation which I now know was attributable to the nortriptyline. My PCP and I made a shared decision: replace the Nortriptyline on a graduated taper with a tincture of 1:1 CBD/THC. It has been 4 months and I am finally free of taper symptoms and an anti-depressant which did its job and was no longer needed.

So what is next? Duloxetine. I am going to wait for you Rachel, to finish your duloxetine taper so that I can benefit from your experience. I am currently researching substitutes.

Isn't this a wonderful thing about Connect........we share and support each other..........giving us access to ever so much information from an up-close and personal source.....other members. I want to thank all of you who have shared your taper experiences. You have helped me and I am very grateful. Be free of suffering. Chris

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Hi Chris
I'll be sure to report back on Duloxetine. I have 2 weeks left of every other day. I believe (hope) CBD will suffice for my mental stability. At this point my pain is loosely controlled by hydro every 3 hours. I rotate the highest dose of THC (extra strength), that I can function on and tolerate, between hydro. My PCP does not want to increase hydro strength, which is why he pulled old school Nortriptyline out of his bag. I'm fighting a losing battle because I'm virtually worthless physically. From scalp to toes, I am big time defective.I can get a couple hours out of the house being carted around for mainly appointments. My hope is that my neurologist can diagnose and prove need for IVIG. We shall see next week when I meet with him. I'm hitting such a wall and reaching out again to a local Samaritan counseling center to get back to counseling. So tough as my husband works all day and I'm alone, need rides and to depend on others. Something has got to give. Been very difficult lately for me to grasp my decline and keep mindfulness going, Im trying. Enough sob story for now. Always a pleasure chatting with you. Be well.
Rachel

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