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.

ess77 - Elizabeth | @ess77 | Mar 11, 2021
In reply to @sunnyflower "Hi there Jake. I have almost 500 emails in my neuropathy group! Yikes, I will never..." + (show)
@sunnyflower

Hi there Jake. I have almost 500 emails in my neuropathy group! Yikes, I will never catch up! More poor health and more self care for it takes away a lot of time out of the day! I've had neuropathy for a long time before I took Gabapentin for it. I used to make my own CBD from real CBD oil at the dispensary but it took a long time to make 90 or 93 capsules 4 the month. It didn't seem to be helping. I've used the treatment plan that dr. Alan Frankel from greenbridge Medical in Santa Monica California gave to me. Anyway I couldn't take my pain anymore so acquiesced to use Gabapentin. It really does help the brain perceive pain to be a little more doll and since without it might being was intolerable and I guess really still is a lot of the time, in spite of the many side effects from the medication that I can't stand, I stay on it and even consider increasing when I can't take my pain anymore. I'm at a low dose 300 mg 3 times a day. Some people are over 3,000 mg. I hope you're doing well and I appreciate the list of medications you sent to me that can cause neuropathy or make it worse. I definitely will give them much consideration. Take care of yourself! Sunny flower

Jump to this post

@sunnyflower Hello, Sunny flower. I've missed you. Hope you're better and didn't suffer all this time with the vaccine side effects. My reactions lasted about 18 hours, then when fever broke, so did all the problems and I began to improve. No fun, but I know for sure I have antibodies in this body! A good thing.....

I can't wait to get your response to my post to you several days ago, Lady, when you were discussing the posh, funky new rollater your husband just put together for you. Well, I went nuts reading that and immediately went online and bought one for myself. We live, I think, around the world almost from each other, so won't be 'knocking' into you, but wouldn't matter. We'd just end up in a race or whatever....

I hope you are better and energy is up. We're getting into the lovely time of year for flowers......let me know how you're doing and after you read my message. We really are 'sisters in 'bling'...Blessings your way and you get better and better! elizabeth in Florida

REPLY
1 reply
sunnyflower | @sunnyflower | Mar 13, 2021
In reply to @jakedduck1 "@sunnyflower I took the maximum dose (3600mg) of Gabapentin, although I took the brand name Neurontin..." + (show)
@jakedduck1

@sunnyflower
I took the maximum dose (3600mg) of Gabapentin, although I took the brand name Neurontin but it didn't help my seizures or Neuropathy. My brother currently takes 3600mg of Neurontin and he gets some relief. If it’s helping you, perhaps you might consider increasing the dose to see if it's more effective unless side effects preclude it.
Take care,
Jake

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Thanks Jake. Yes, I think about increasing my Gabapentin dose every day. I think it works somewhat; makes my pain tolerable most of the time. However, I could do much better. I just can't stand the side-effects; my balance is off so bad I almost fall every time I turn around. My memory is terrible since the Gaba. Thoughts leave my mind even before I finish thinking them. It's embarrassing! There's more. Ug! I'm also on morphine; Kadian, the kind reserved for cancer etc. patients; rarely given. It's a long-acting morphine. It doesn't take away pain, just makes it tolerable. But not always. Anyway, my faith gets me through. God gives me just the perfect scripture verses that I need at the right time. Were it not for His ever-presence, comfort and peace of Christ that transcends all understanding (Philippians 4:7), and my hope for things to come, I wouldn't have made it this far!!!!!!! Many blessings to you, Sunnyflower

REPLY
1 reply
sunnyflower | @sunnyflower | Mar 13, 2021
In reply to @ess77 "@sunnyflower Hello, Sunny flower. I've missed you. Hope you're better and didn't suffer all this time..." + (show)
@ess77

@sunnyflower Hello, Sunny flower. I've missed you. Hope you're better and didn't suffer all this time with the vaccine side effects. My reactions lasted about 18 hours, then when fever broke, so did all the problems and I began to improve. No fun, but I know for sure I have antibodies in this body! A good thing.....

I can't wait to get your response to my post to you several days ago, Lady, when you were discussing the posh, funky new rollater your husband just put together for you. Well, I went nuts reading that and immediately went online and bought one for myself. We live, I think, around the world almost from each other, so won't be 'knocking' into you, but wouldn't matter. We'd just end up in a race or whatever....

I hope you are better and energy is up. We're getting into the lovely time of year for flowers......let me know how you're doing and after you read my message. We really are 'sisters in 'bling'...Blessings your way and you get better and better! elizabeth in Florida

Jump to this post

Hello Elizabeth! Thanks for reaching out! I have over 500 emails from my Connect groups. I am so far behind I'm not seeing people's messages to me. I'm don't want anyone to think I"m ignoring them!

I haven't been feeling well for a long time now so I have even more limited opportunity to talk to people on Connect. I feel worse since my 2nd dose of Moderna. No fever just malaise.

Over time my neuropathy is so much worse. I have it from head to toe. Burn/sting/numb/pins/needles. Only ice gels help. I sit w/heat at my feet, thighs and hands, and ice on my knees and lower legs. Tucked under my winter weight down comforter. Ug, stuck to my bed most of the time. I have Raynaud's disease so between that and my neuropathy, I am very hot and cold in places, sometimes at the same time!! Burn so hot it feels cold. Or wait, is it the other way around? Oh my!

I have several diseases as well and am very weak. No complaints; just info.

I am a woman of faith and God's ever-presence, comfort, and peace through Christ which transcends all understanding (Philippians 4:7), is what gets me through. Just the right verses at the right time!

Thanks you for reaching out! I enjoyed reading your message about the rollator, etc. I live about 25 minutes north of Seattle. Do you live in Florida? I thought I read that but can't find it or recall. I hope the rollator works well for you.

I also have severe osteoporosis and have broken 3 pelvic bones, a rib, etc. so am really not supposed to life my walker. I can't slide it out of the car but not hoist it up into the back of the car. I can almost always find someone to help.

I hope and pray the very best for you! Warmest wishes, Sunnyflower

REPLY
2 replies
bethunger | @bethunger | Mar 13, 2021
In reply to @sunnyflower "Hello Elizabeth! Thanks for reaching out! I have over 500 emails from my Connect groups. I..." + (show)
@sunnyflower

Hello Elizabeth! Thanks for reaching out! I have over 500 emails from my Connect groups. I am so far behind I'm not seeing people's messages to me. I'm don't want anyone to think I"m ignoring them!

I haven't been feeling well for a long time now so I have even more limited opportunity to talk to people on Connect. I feel worse since my 2nd dose of Moderna. No fever just malaise.

Over time my neuropathy is so much worse. I have it from head to toe. Burn/sting/numb/pins/needles. Only ice gels help. I sit w/heat at my feet, thighs and hands, and ice on my knees and lower legs. Tucked under my winter weight down comforter. Ug, stuck to my bed most of the time. I have Raynaud's disease so between that and my neuropathy, I am very hot and cold in places, sometimes at the same time!! Burn so hot it feels cold. Or wait, is it the other way around? Oh my!

I have several diseases as well and am very weak. No complaints; just info.

I am a woman of faith and God's ever-presence, comfort, and peace through Christ which transcends all understanding (Philippians 4:7), is what gets me through. Just the right verses at the right time!

Thanks you for reaching out! I enjoyed reading your message about the rollator, etc. I live about 25 minutes north of Seattle. Do you live in Florida? I thought I read that but can't find it or recall. I hope the rollator works well for you.

I also have severe osteoporosis and have broken 3 pelvic bones, a rib, etc. so am really not supposed to life my walker. I can't slide it out of the car but not hoist it up into the back of the car. I can almost always find someone to help.

I hope and pray the very best for you! Warmest wishes, Sunnyflower

Jump to this post

I am so sorry to read of your multiple sufferings. You truly handle things so well, it is an inspiration. You also replied very quickly, especially for someone that has so many emails; so no need to apologize for the length of waiting times. I live right outside of Denver, Colorado. We are expecting a large snowstorm this weekend, so today I busied myself with getting a roast on. It is just my husband and myself so a roast will be more than enough for a few days.

Like you, I had some health issues prior to getting neuropathy. It seems that they were all under control until I had sepsis. It has been a few years ago, yet I haven't gone back to pre-sepsis health. Oh well, also not complaining just informing. My seizure disorder has done the worst. I now just have to expect waking up on the floor at times. It is what it is. I do have great physicians and they respond fairly quickly when I need new changes in my medication regime. Well, It looks like I have not done a good job of not complaining. So, I will close. I wish you the best of health or improving health anyway. Thanks for listening or reading my note,
Beth or Elizabeth, either one. will do.

REPLY
1 reply
tigreyes2004 | @tigreyes2004 | Mar 13, 2021
In reply to @sunnyflower "Thanks Jake. Yes, I think about increasing my Gabapentin dose every day. I think it works..." + (show)
@sunnyflower

Thanks Jake. Yes, I think about increasing my Gabapentin dose every day. I think it works somewhat; makes my pain tolerable most of the time. However, I could do much better. I just can't stand the side-effects; my balance is off so bad I almost fall every time I turn around. My memory is terrible since the Gaba. Thoughts leave my mind even before I finish thinking them. It's embarrassing! There's more. Ug! I'm also on morphine; Kadian, the kind reserved for cancer etc. patients; rarely given. It's a long-acting morphine. It doesn't take away pain, just makes it tolerable. But not always. Anyway, my faith gets me through. God gives me just the perfect scripture verses that I need at the right time. Were it not for His ever-presence, comfort and peace of Christ that transcends all understanding (Philippians 4:7), and my hope for things to come, I wouldn't have made it this far!!!!!!! Many blessings to you, Sunnyflower

Jump to this post

I have been thinking about increasing my Gabapentin but I know what you mean. I'm forgetful & short term memory loss. I think of something to put on my grocery list & I walk 2 feet & forget. Words don't come out right so I know exactly what you mean. I am afraid to take Lyrica
Take care & God bless
Genie

REPLY
2 replies
steeldove | @steeldove | Mar 13, 2021
In reply to @tigreyes2004 "I have been thinking about increasing my Gabapentin but I know what you mean. I'm forgetful..." + (show)
@tigreyes2004

I have been thinking about increasing my Gabapentin but I know what you mean. I'm forgetful & short term memory loss. I think of something to put on my grocery list & I walk 2 feet & forget. Words don't come out right so I know exactly what you mean. I am afraid to take Lyrica
Take care & God bless
Genie

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@tigreyes2004 Mayo Clinic lists the following side effects of Gabapentin: https://www.mayoclinic.org/drugs-supplements/gabapentin-oral-route/side-effects/drg-20064011

REPLY
Leonard | @jakedduck1 | Mar 13, 2021
In reply to @tigreyes2004 "I have been thinking about increasing my Gabapentin but I know what you mean. I'm forgetful..." + (show)
@tigreyes2004

I have been thinking about increasing my Gabapentin but I know what you mean. I'm forgetful & short term memory loss. I think of something to put on my grocery list & I walk 2 feet & forget. Words don't come out right so I know exactly what you mean. I am afraid to take Lyrica
Take care & God bless
Genie

Jump to this post

@tigreyes2004
I won't take Lyrica either. Been there done that . Did not affect my seizures or Neuropathy.
Take care,
Jake

REPLY
tigreyes2004 | @tigreyes2004 | Mar 13, 2021

If you took Lyrica, what were your side effects. I know that it can make you gain a lot of weight.

REPLY
Leonard | @jakedduck1 | Mar 13, 2021

@tigreyes2004
I was already taking a lot of seizure meds which affected my balance and Lyrica increased that. but my main problem was when I woke up my arm was paralyzed, it was stuck up in the air and I couldn’t move it. Also muscle pain which I didn't have on any other seizure meds. I didn’t gain any weight. I filed a complaint with the FDA.
If you have been on Gabapentin for a few months your side effect may improve but unfortunately not always. Good luck,
Jake

REPLY
1 reply
ginger7 | @ginger7 | Mar 13, 2021
In reply to @sunnyflower "Hello Elizabeth! Thanks for reaching out! I have over 500 emails from my Connect groups. I..." + (show)
@sunnyflower

Hello Elizabeth! Thanks for reaching out! I have over 500 emails from my Connect groups. I am so far behind I'm not seeing people's messages to me. I'm don't want anyone to think I"m ignoring them!

I haven't been feeling well for a long time now so I have even more limited opportunity to talk to people on Connect. I feel worse since my 2nd dose of Moderna. No fever just malaise.

Over time my neuropathy is so much worse. I have it from head to toe. Burn/sting/numb/pins/needles. Only ice gels help. I sit w/heat at my feet, thighs and hands, and ice on my knees and lower legs. Tucked under my winter weight down comforter. Ug, stuck to my bed most of the time. I have Raynaud's disease so between that and my neuropathy, I am very hot and cold in places, sometimes at the same time!! Burn so hot it feels cold. Or wait, is it the other way around? Oh my!

I have several diseases as well and am very weak. No complaints; just info.

I am a woman of faith and God's ever-presence, comfort, and peace through Christ which transcends all understanding (Philippians 4:7), is what gets me through. Just the right verses at the right time!

Thanks you for reaching out! I enjoyed reading your message about the rollator, etc. I live about 25 minutes north of Seattle. Do you live in Florida? I thought I read that but can't find it or recall. I hope the rollator works well for you.

I also have severe osteoporosis and have broken 3 pelvic bones, a rib, etc. so am really not supposed to life my walker. I can't slide it out of the car but not hoist it up into the back of the car. I can almost always find someone to help.

I hope and pray the very best for you! Warmest wishes, Sunnyflower

Jump to this post

John and Ed had breakfast with her and he said she seemed like a nice woman,
totally ignored by Cuomo.

REPLY
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