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.

fala | @fala | Feb 6, 2022

In reply to @davelobb12 "So far that has been a big help for sleeping. I completely agree!" + (show)

Sleep is a problem than has gotten worse throughout the years. Prescriptions have too many side effect, so I went to THC.
I use CBD for my PN, but the THC does not put me to sleep. Is there a particular brand or strain that works best? When I first tried Marijuana in my youth, some party people got very sleepy, but that was never a side effect for me. I thought I just did not take in enough inhaling. Now, I have tried several brands, even buying the most expensive to see if that was the answer. Nope.
I sure wish I could solve my sleep problem!! Any ideas out there?

Chris Trout, Volunteer Mentor | @artscaping | Feb 6, 2022

In reply to @fala "Sleep is a problem than has gotten worse throughout the years. Prescriptions have too many side..." + (show)

Hi @fala, nice to see you again. I remember that you are having trouble sleeping or is it getting to sleep. With me, it is getting to sleep. Whew....my mind just jumps around. I do some concentrated breathing and focus on positive thoughts in a mindful way. I also reduce my THC but don't get rid of it because then you give up the entourage effect. For me, that means a 2:1 CBD/THC dosage. How much are you using? I use a full dropper and the under-the-tongue method about 30 minutes before lights out. I also stay off my devices and repeat some mindfulness/meditation messages to myself.

Do you take naps during the day? Long ones? Short ones?
May you find rest and contentment.
Chris

fala | @fala | Feb 6, 2022

In reply to @artscaping "Hi @fala, nice to see you again. I remember that you are having trouble sleeping or..." + (show)

Hi Chris, Thanks so much for your response. I have trouble getting to sleep, sometimes staying asleep. I usually go to bed around 10:30. I do not nap at all. I very rarely get sleepy, just tired. For some reason, the two do not seems to go together with me. I think it is very strange to be as tired after walking or exercising but never sleepy. I have tried a mixture of pills and yet I have not tried the under the tongue in the time frame that you mentioned. I will listen to a story on a cd to relax, but often it is 2or 3 hours before I feel there is even a chance of sleep with OTC pills and THC.. Often 3 hours or none!
Tonight I will WAIT until I have been in bed for a while and THEN take the THC under my tongue. Hope. You have given me new hope. Thank you!

rubethedogman | @rubethedogman | Feb 7, 2022

In reply to @fala "Sleep is a problem than has gotten worse throughout the years. Prescriptions have too many side..." + (show)

You should be smoking or eating edibles that are of the strain "Indica". The other strain is Sativa and it revs you up, not calms you down. There are hybrids also. Just get Indica.

pngbee74 | @pngbee74 | Feb 7, 2022

Had chemo 15 years ago and still have Neuropathy in hands and feet. Weather, activity level and how much I use my hands and feet affects degree of pain.

John, Volunteer Mentor | @johnbishop | Feb 7, 2022

In reply to @pngbee74 "Had chemo 15 years ago and still have Neuropathy in hands and feet. Weather, activity level..." + (show)

Hello @pngbee74, Welcome to Connect. I see in your first post that you've had two TKRs and a nerve block on your second TKR. I've had a TKR in my right knee a little over 2 years ago and may need to get one for my left knee sometime down the road. I don't have pain with my neuropathy but do have the numbness mostly in the feet. Weather, especially the winter cold does a number on my hands and feet. I'm always looking for ways to keep them warm.

Do you have to take any medication for your pain or are you able to manage without taking anything for the pain?

pngbee74 | @pngbee74 | Feb 7, 2022

In reply to @johnbishop "Hello @pngbee74, Welcome to Connect. I see in your first post that you've had two TKRs..." + (show)

Hi John: Basically, I just try self care - massage and then just try not to focus on the pain!! It works some of the time. When it gets too much, I take pain meds.
Take care. Pat