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
John, Volunteer Mentor | @johnbishop | Sep 4, 2020
In reply to @summertime4 "@fiesty76 I like that call name. Fiesty is good. I am not feeling very fiesty. The..." + (show)
@summertime4

@fiesty76 I like that call name. Fiesty is good. I am not feeling very fiesty. The pain throughout my body is taking a toll. My brain is fried with pain, especially in my toes , feet and legs. I can feel the progression My neurologist tells me it is the way it is and will not get better It is just managing the symptoms which includes the pain. This all came about as idiopathic because I don;t or didn't have diabetes..Now after almost 5 years of neuropathy my A!C is off. This makes the doctor think I am diabetic or pre diabetic. So did the neuropathy cause that. My quality of life has done a dramatic change.My feet and toes hurt so bad that even a percocet (which I am prescribed) doesn;t do much. I take Gabapentin 600 mg at night I don't see it is helping and then think maybe it would be worse if I didn't take it. Is this the way I have to live waiting to die. ? Sorry friends, I haven't been out of bed long and the pain is kicking my butt and I am feeling sorry for myself. I do normal things one day and suffer so much the next day. I read these posts everyday and I do get hope and encouragement. Need a little extra today. I do have an appointment with the podiatrist next week, for all that is worth. At least get my nails clipped just like an old horse. Sorry I am in a bummer. Love you all.. .

Jump to this post

@summertime4, Sorry you are in a bummer. It's times when you are that you just have to take things slow and easy, one step, one day at a time.. Hope your day gets better and better.

REPLY
summertime4 | @summertime4 | Sep 4, 2020

@winney @johnbishop Thank you so much for your responses. It means alot to be acknowledged and having our feelings validated.

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1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Sep 4, 2020
In reply to @summertime4 "@winney @johnbishop Thank you so much for your responses. It means alot to be acknowledged and..." + (show)
@summertime4

@winney @johnbishop Thank you so much for your responses. It means alot to be acknowledged and having our feelings validated.

Jump to this post

You're welcome. Feel better

REPLY
Hank | @jesfactsmon | Sep 4, 2020
In reply to @summertime4 "@fiesty76 I like that call name. Fiesty is good. I am not feeling very fiesty. The..." + (show)
@summertime4

@fiesty76 I like that call name. Fiesty is good. I am not feeling very fiesty. The pain throughout my body is taking a toll. My brain is fried with pain, especially in my toes , feet and legs. I can feel the progression My neurologist tells me it is the way it is and will not get better It is just managing the symptoms which includes the pain. This all came about as idiopathic because I don;t or didn't have diabetes..Now after almost 5 years of neuropathy my A!C is off. This makes the doctor think I am diabetic or pre diabetic. So did the neuropathy cause that. My quality of life has done a dramatic change.My feet and toes hurt so bad that even a percocet (which I am prescribed) doesn;t do much. I take Gabapentin 600 mg at night I don't see it is helping and then think maybe it would be worse if I didn't take it. Is this the way I have to live waiting to die. ? Sorry friends, I haven't been out of bed long and the pain is kicking my butt and I am feeling sorry for myself. I do normal things one day and suffer so much the next day. I read these posts everyday and I do get hope and encouragement. Need a little extra today. I do have an appointment with the podiatrist next week, for all that is worth. At least get my nails clipped just like an old horse. Sorry I am in a bummer. Love you all.. .

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Hi @summertime4 Not very fiesty, eh? Probably not very summer like either I'm assuming. Wouldn't be great if on the days you feel crappy your user name would just automatically change to @crappy? Sorry, my pitiful attempt to cheer you up.

I hear you about the gabapentin. Lots of people love it, and lots don't see any benefit, such as my wife who had nothing but bad side effects. You know, she started popping an extra magnesium pill just before bed about a month ago, and maybe it's a coincidence, but she has been getting to sleep lots better than she did before, or at least it seems like it. Do you take magnesium before bedtime?

I sympathize with you so much to have to hear from your neurologist that "that's just the way it is". He could be right, but maybe he could say it in a somewhat more positive way? I mean, lots of people are trying ne stuff every day so you never know. I just read about something I was not aware of over in the chemo neuropathy discussion. Did you ever try PEA? Its name is Palmitoylethanolamide so better to stick with PEA. My wife and I are going to discuss it later today.

Anyway, my best to you @crappy, I mean @summertime4. Hang in there. ✌ Hank

REPLY
fiesty76 | @fiesty76 | Sep 4, 2020
In reply to @summertime4 "@fiesty76 I like that call name. Fiesty is good. I am not feeling very fiesty. The..." + (show)
@summertime4

@fiesty76 I like that call name. Fiesty is good. I am not feeling very fiesty. The pain throughout my body is taking a toll. My brain is fried with pain, especially in my toes , feet and legs. I can feel the progression My neurologist tells me it is the way it is and will not get better It is just managing the symptoms which includes the pain. This all came about as idiopathic because I don;t or didn't have diabetes..Now after almost 5 years of neuropathy my A!C is off. This makes the doctor think I am diabetic or pre diabetic. So did the neuropathy cause that. My quality of life has done a dramatic change.My feet and toes hurt so bad that even a percocet (which I am prescribed) doesn;t do much. I take Gabapentin 600 mg at night I don't see it is helping and then think maybe it would be worse if I didn't take it. Is this the way I have to live waiting to die. ? Sorry friends, I haven't been out of bed long and the pain is kicking my butt and I am feeling sorry for myself. I do normal things one day and suffer so much the next day. I read these posts everyday and I do get hope and encouragement. Need a little extra today. I do have an appointment with the podiatrist next week, for all that is worth. At least get my nails clipped just like an old horse. Sorry I am in a bummer. Love you all.. .

Jump to this post

@summertime, I'm glad you like my "handle" but do want you to know that like @jesfactsmon suggested, some days probably most of us feel @crappy too. Those days are wretched and having a safe and understanding place to vent can really help. I was starting a reply when a call came that my friend could come sit at my outdoor table to help me with my new android cell phone. Know idea if I completed the post to you and sent it or not. So if I'm repeating myself, just chalk it up to olde and forgetful, ok?

My cardiologist referred me to a neurologist for numb feet a yr ago. When tests didn't find the source of the neuropathy, the doc ordered diabetes testing which showed me pre-diabetic. Neither of these maladies were ever reported by other family members. I don't know which came first.. the cart or horse but Metformin was prescribed for the diabetes and nothing for the neuropathy.

I stopped the Metformin on my own because of continuing nausea, appetite and weight loss. Thirty lost lbs and multiple tests later, I never received a medical reason for the loss but did receive an additional diagnosis of chronic kidney disease (ckd). When it rains it pours, yes?

@rswinney, posting about "when we're in our own soup, we're in our own soup" is a good descriptor. I always say, "if your foot is broken and my hip is broken, we both hurt". And, as Rachel continued, some days our diversions work and help and others they just don't. That's when it is good to have a group like this who can listen, support and just commiserate. As she and @john wrote, it helps to remember you are not alone and others are hoping "your day gets better and better". Bet other heads were nodding in agreement as we read that one day we do more normal things and the next day we pay the price. Take care. We are here for you and each other.

REPLY
1 reply
bustrbrwn22 | @bustrbrwn22 | Sep 4, 2020
In reply to @fiesty76 "@summertime, I'm glad you like my "handle" but do want you to know that like @jesfactsmon..." + (show)
@fiesty76

@summertime, I'm glad you like my "handle" but do want you to know that like @jesfactsmon suggested, some days probably most of us feel @crappy too. Those days are wretched and having a safe and understanding place to vent can really help. I was starting a reply when a call came that my friend could come sit at my outdoor table to help me with my new android cell phone. Know idea if I completed the post to you and sent it or not. So if I'm repeating myself, just chalk it up to olde and forgetful, ok?

My cardiologist referred me to a neurologist for numb feet a yr ago. When tests didn't find the source of the neuropathy, the doc ordered diabetes testing which showed me pre-diabetic. Neither of these maladies were ever reported by other family members. I don't know which came first.. the cart or horse but Metformin was prescribed for the diabetes and nothing for the neuropathy.

I stopped the Metformin on my own because of continuing nausea, appetite and weight loss. Thirty lost lbs and multiple tests later, I never received a medical reason for the loss but did receive an additional diagnosis of chronic kidney disease (ckd). When it rains it pours, yes?

@rswinney, posting about "when we're in our own soup, we're in our own soup" is a good descriptor. I always say, "if your foot is broken and my hip is broken, we both hurt". And, as Rachel continued, some days our diversions work and help and others they just don't. That's when it is good to have a group like this who can listen, support and just commiserate. As she and @john wrote, it helps to remember you are not alone and others are hoping "your day gets better and better". Bet other heads were nodding in agreement as we read that one day we do more normal things and the next day we pay the price. Take care. We are here for you and each other.

Jump to this post

So sorry to hear

REPLY
bustrbrwn22 | @bustrbrwn22 | Sep 4, 2020
In reply to @summertime4 "@fiesty76 I like that call name. Fiesty is good. I am not feeling very fiesty. The..." + (show)
@summertime4

@fiesty76 I like that call name. Fiesty is good. I am not feeling very fiesty. The pain throughout my body is taking a toll. My brain is fried with pain, especially in my toes , feet and legs. I can feel the progression My neurologist tells me it is the way it is and will not get better It is just managing the symptoms which includes the pain. This all came about as idiopathic because I don;t or didn't have diabetes..Now after almost 5 years of neuropathy my A!C is off. This makes the doctor think I am diabetic or pre diabetic. So did the neuropathy cause that. My quality of life has done a dramatic change.My feet and toes hurt so bad that even a percocet (which I am prescribed) doesn;t do much. I take Gabapentin 600 mg at night I don't see it is helping and then think maybe it would be worse if I didn't take it. Is this the way I have to live waiting to die. ? Sorry friends, I haven't been out of bed long and the pain is kicking my butt and I am feeling sorry for myself. I do normal things one day and suffer so much the next day. I read these posts everyday and I do get hope and encouragement. Need a little extra today. I do have an appointment with the podiatrist next week, for all that is worth. At least get my nails clipped just like an old horse. Sorry I am in a bummer. Love you all.. .

Jump to this post

I wonder what doctors would do if they felt the pain we feel

REPLY
mayofeb2020 | @mayofeb2020 | Sep 4, 2020

@bustrbrwn22. So true! Sometimes it's really hard to describe pain. It's so abstract!

REPLY
1 reply
bustrbrwn22 | @bustrbrwn22 | Sep 4, 2020
In reply to @mayofeb2020 "@bustrbrwn22. So true! Sometimes it's really hard to describe pain. It's so abstract!" + (show)
@mayofeb2020

@bustrbrwn22. So true! Sometimes it's really hard to describe pain. It's so abstract!

Jump to this post

I agree

REPLY
bustrbrwn22 | @bustrbrwn22 | Sep 5, 2020

@colleenyoung I hope there aren’t 2 of us with the same handle. I am new and go by Bustrbrwn22. I have had worsening sciatica for the past 10 years and am now practically bedridden from pain. I am on my feet to go to the bathroom and very little else. I am prescribed a very minimal amount of hydrocodone probably because I have debilitated anxiety and massive depression which has only responded to benzos. Believe me I have tried every antidepressant, anti anxiety, and non-narcotic drug there is. It is a struggle to make through every day. Pain is at a 10 now at all times from right butt, right hamstring, outsides of both calves, and bottoms of both feet. I purchased the TENS unit Kedsum that someone recommended and I could at least wash some dishes today but the minute it turns off the pain is excruciating. Any advice or kindness is so appreciated.

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