Living with Neuropathy - Welcome to the group

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?

@jimhd

@tigreyes2004 I take a few meds that can be constipating. I have a history of intestinal surgeries, peptic ulcers and for adhesions. I've gone to the ER several times for bowel obstruction, so anytime my stomach hurts, my first thought is, not again!

I take a tablespoon of Lactulose ( it comes with various names), and I have good bowel movements as a rule. If I can't have one, I take a little more Lactulose. I actually like the flavor, but my brother, who has less than 10% liver function, has to take a larger dose several times a day, and hates it. I've found that if I eat a small piece of chocolate before I take it, it enhances the flavor.

The Lactulose I take is a prescription, so it's paid for by Medicare and a supplement. Of course, there are many constipation treatments out there.

Jim

Jump to this post

@jimhd. I had to take lactose when I had cirrhosis. Those of us who had to and hated it were doing happy dances after our transplants. When I was in pain the first few days after my transplant my husband would console me by reminding me “no more lactulose!”.
I found it more tolerable if I mixed it with soda water or cranberry juice, or both. Suggest to your brother that he try that. A nurse in the hospital did that for me so then I started doing it at home too. I would still have a period of nausea after taking it though.
JK

REPLY
@jeffrapp

Hi Jake
Thanks so much for your reply.
I did have subtle neuropathic symptoms before my cancer diagnosis, but I also had the cancer before it was diagnosed. I had a CT scan as part of a work up for BPH (large prostate). The finding of a lymphoma was "incidental", as I had no symptoms from that. I'm sure (but nobody else is) that the neuropathy is related to the lymphoma.
Most of the people who have neuropathy as part of a cancer diagnosis is because of chemotherapy, which I never had. So mine remains idiopathic.
Your assumption about SFPN not showing up on an EMG/NCS is correct. My EMG was normal.
So far, my symptoms are all sensory. I can't wear shoes and socks, even in the winter. Bummer!
I have tried all sorts of topical stuff (some recommended on this forum) but nothing really works.
My diet is "pretty good", sort of Mediterranean, which means too much pasta.
I also drink "too much" (about 3 drinks a night, but I used to do more). I tried abstaining for about 3 months, but I kept on getting worse anyway. I figured I might as well suffer tipsy rather than sober. I'm still trying to find out whether anyone thinks there is a definate connection between my drinking and PN, but I get all sorts of maybe answers. I don't think anyone really knows.
The one thing that makes me feel better is warm weather.
Thanks for your kind words, and good luck to you too. Getting old is not for sissies.
Jeff

Jump to this post

I have spinal stenosis causing my neuropathy in feet! I also have 3-4 drinks every evening! Stopped and didn’t help! Only thing that helps are the drinks! Just had another mri ! Waiting on results! Good luck!

REPLY
@wilcy

I have spinal stenosis causing my neuropathy in feet! I also have 3-4 drinks every evening! Stopped and didn’t help! Only thing that helps are the drinks! Just had another mri ! Waiting on results! Good luck!

Jump to this post

@wilcy Have you considered surgery for your spinal stenosis? My brother-in-law had that and the surgery was a great success.
JK

Liked by Leonard

REPLY

Last October, had 2 rods and 6 screws put in at l4 and L 5! Just made back stronger! Surgeon last week gave me a week worth of steroids! After 2nd day, my feet and legs almost felt normal! Was able to go into 3 stores! Now, back to neuropathy in feet! Hope mri shows something! Proves nerve is getting pinched!

Liked by Leonard

REPLY
@jeffrapp

Hi Jake
Thanks so much for your reply.
I did have subtle neuropathic symptoms before my cancer diagnosis, but I also had the cancer before it was diagnosed. I had a CT scan as part of a work up for BPH (large prostate). The finding of a lymphoma was "incidental", as I had no symptoms from that. I'm sure (but nobody else is) that the neuropathy is related to the lymphoma.
Most of the people who have neuropathy as part of a cancer diagnosis is because of chemotherapy, which I never had. So mine remains idiopathic.
Your assumption about SFPN not showing up on an EMG/NCS is correct. My EMG was normal.
So far, my symptoms are all sensory. I can't wear shoes and socks, even in the winter. Bummer!
I have tried all sorts of topical stuff (some recommended on this forum) but nothing really works.
My diet is "pretty good", sort of Mediterranean, which means too much pasta.
I also drink "too much" (about 3 drinks a night, but I used to do more). I tried abstaining for about 3 months, but I kept on getting worse anyway. I figured I might as well suffer tipsy rather than sober. I'm still trying to find out whether anyone thinks there is a definate connection between my drinking and PN, but I get all sorts of maybe answers. I don't think anyone really knows.
The one thing that makes me feel better is warm weather.
Thanks for your kind words, and good luck to you too. Getting old is not for sissies.
Jeff

Jump to this post

@jeffrapp
No socks? Your pain must be severe. Have you been on narcotics? If so did they help? They didn’t totally get rid of my pain but they helped.
I don’t think the alcohol is helping anything. In my opinion 3 months isn’t very long. In fact alcohol is is the second leading cause of Neuropathy after Diabetes.
Alcohol is considered a poison by the body and causes absorption problems of B-12. B-12 is essential for normal nerve and red blood cell production and necessary for DNA among other things.
Might not be a bad idea to have your B-12 level checked. You may just have a low B-12 level. Your body may well have trouble absorbing vitamin B-12 because of the alcohol and perhaps you only have a vitamin deficiency. A B-12 deficiency can also cause nerve damage and Neuropathy symptoms as well as degeneration of the spine. It’s unlikely your symptoms will improve if you abstain from your nightcaps. However your Neuropathy may not get worse, provided it’s a B-12 issue. I wonder if all that pasta could be contributing to the problem. Have you had your Glucose checked recently? I assume you don’t have Diabetes.
Jake

REPLY
@wilcy

I have spinal stenosis causing my neuropathy in feet! I also have 3-4 drinks every evening! Stopped and didn’t help! Only thing that helps are the drinks! Just had another mri ! Waiting on results! Good luck!

Jump to this post

@wilcy
You better keep a close eye on your Stenosis. I know a man who ignored it and became a paraplegic and another man who is well on his way to paralysis.
“Only thing that helps are the drinks!”
I don’t believe those drinks are helping, my guess would be they are causing additional problems.
Jake

REPLY
@jakedduck1

@jeffrapp
No socks? Your pain must be severe. Have you been on narcotics? If so did they help? They didn’t totally get rid of my pain but they helped.
I don’t think the alcohol is helping anything. In my opinion 3 months isn’t very long. In fact alcohol is is the second leading cause of Neuropathy after Diabetes.
Alcohol is considered a poison by the body and causes absorption problems of B-12. B-12 is essential for normal nerve and red blood cell production and necessary for DNA among other things.
Might not be a bad idea to have your B-12 level checked. You may just have a low B-12 level. Your body may well have trouble absorbing vitamin B-12 because of the alcohol and perhaps you only have a vitamin deficiency. A B-12 deficiency can also cause nerve damage and Neuropathy symptoms as well as degeneration of the spine. It’s unlikely your symptoms will improve if you abstain from your nightcaps. However your Neuropathy may not get worse, provided it’s a B-12 issue. I wonder if all that pasta could be contributing to the problem. Have you had your Glucose checked recently? I assume you don’t have Diabetes.
Jake

Jump to this post

Hello Jake! Yes, b12 , d3 etc have all been ckd! All good! I take lots of supplements including b12! I eat very healthy! No diabetes! Just old mistreated back! Not going to stop sitting on porch in afternoon having a drink! Too old!

REPLY
@jeffrapp

Hi Jake
Thanks so much for your reply.
I did have subtle neuropathic symptoms before my cancer diagnosis, but I also had the cancer before it was diagnosed. I had a CT scan as part of a work up for BPH (large prostate). The finding of a lymphoma was "incidental", as I had no symptoms from that. I'm sure (but nobody else is) that the neuropathy is related to the lymphoma.
Most of the people who have neuropathy as part of a cancer diagnosis is because of chemotherapy, which I never had. So mine remains idiopathic.
Your assumption about SFPN not showing up on an EMG/NCS is correct. My EMG was normal.
So far, my symptoms are all sensory. I can't wear shoes and socks, even in the winter. Bummer!
I have tried all sorts of topical stuff (some recommended on this forum) but nothing really works.
My diet is "pretty good", sort of Mediterranean, which means too much pasta.
I also drink "too much" (about 3 drinks a night, but I used to do more). I tried abstaining for about 3 months, but I kept on getting worse anyway. I figured I might as well suffer tipsy rather than sober. I'm still trying to find out whether anyone thinks there is a definate connection between my drinking and PN, but I get all sorts of maybe answers. I don't think anyone really knows.
The one thing that makes me feel better is warm weather.
Thanks for your kind words, and good luck to you too. Getting old is not for sissies.
Jeff

Jump to this post

@jeffrapp Shoes and socks – anything that makes contact with my feet – is an ongoing issue. If it's cold, I have socks that are over sized for sleeping, but sometimes I can't tolerate them. I've been shopping for shoes that are a size larger than my size 13 feet, and have a roomy toe bed, so I can layer enough insoles so I can walk with at least some level of comfort. (Yeah right. Comfort!?) I bought a blanket lifter on Amazon to keep the bedding off my feet. I have a pillow for my feet, and sometimes I can be ok with my feet resting on it, but most of the time I arrange the pillow so my heels are on it and my toes off it but not touching the bed. I have to sleep on my side facing to the right, partly because I use a bipap machine and the mask stays in place better. Aside from that, it hurts my feet if they touch each other or even if my knee touches my other leg.

I suppose you've tried lidocaine cream 5%. I recently got some online for around $30, instead of the $150 prescription version. I use it at bedtime when my feet are hurting more than usual, and it numbs them enough so I can get to sleep.

I've never drunk alcohol, so at least that's not a possible factor for me. But I guess it's a numbing medication for lots of people.

Each of us has to explore the possibilities and figure out what works for us. I've been amazed over the past ten years at how many cures there are out there for the many kinds of pain. I'm afraid that I'm kind of a wimp when it comes to my pain threshold. So many people deal with way more than I do. I admire the resilience I see in what many people write on this Connect site.

Jim

REPLY
@jimhd

@jeffrapp Shoes and socks – anything that makes contact with my feet – is an ongoing issue. If it's cold, I have socks that are over sized for sleeping, but sometimes I can't tolerate them. I've been shopping for shoes that are a size larger than my size 13 feet, and have a roomy toe bed, so I can layer enough insoles so I can walk with at least some level of comfort. (Yeah right. Comfort!?) I bought a blanket lifter on Amazon to keep the bedding off my feet. I have a pillow for my feet, and sometimes I can be ok with my feet resting on it, but most of the time I arrange the pillow so my heels are on it and my toes off it but not touching the bed. I have to sleep on my side facing to the right, partly because I use a bipap machine and the mask stays in place better. Aside from that, it hurts my feet if they touch each other or even if my knee touches my other leg.

I suppose you've tried lidocaine cream 5%. I recently got some online for around $30, instead of the $150 prescription version. I use it at bedtime when my feet are hurting more than usual, and it numbs them enough so I can get to sleep.

I've never drunk alcohol, so at least that's not a possible factor for me. But I guess it's a numbing medication for lots of people.

Each of us has to explore the possibilities and figure out what works for us. I've been amazed over the past ten years at how many cures there are out there for the many kinds of pain. I'm afraid that I'm kind of a wimp when it comes to my pain threshold. So many people deal with way more than I do. I admire the resilience I see in what many people write on this Connect site.

Jim

Jump to this post

@jimhd
I never used the lidocaine cream but I used lidocaine spray for my tongue and cheeks. It worked good but didn’t last long.
I admire your resilience, that must be excruciatingly painful. I was/am very lucky that I never had the problems with anything touching my feet. Do you use Orthotics? I had some made when all this first started. They helped but needed lots of cushioning. Do you ever fall down. I always fell down if I walked to far, by far I mean the length of the mall. Thankfully that is better too. I have size 13 shoes too. You’d think my balance would be good as long as they are. They look like clown shoes.
Take care,
Jake

REPLY
@jeffrapp

Hi Jake
Thanks so much for your reply.
I did have subtle neuropathic symptoms before my cancer diagnosis, but I also had the cancer before it was diagnosed. I had a CT scan as part of a work up for BPH (large prostate). The finding of a lymphoma was "incidental", as I had no symptoms from that. I'm sure (but nobody else is) that the neuropathy is related to the lymphoma.
Most of the people who have neuropathy as part of a cancer diagnosis is because of chemotherapy, which I never had. So mine remains idiopathic.
Your assumption about SFPN not showing up on an EMG/NCS is correct. My EMG was normal.
So far, my symptoms are all sensory. I can't wear shoes and socks, even in the winter. Bummer!
I have tried all sorts of topical stuff (some recommended on this forum) but nothing really works.
My diet is "pretty good", sort of Mediterranean, which means too much pasta.
I also drink "too much" (about 3 drinks a night, but I used to do more). I tried abstaining for about 3 months, but I kept on getting worse anyway. I figured I might as well suffer tipsy rather than sober. I'm still trying to find out whether anyone thinks there is a definate connection between my drinking and PN, but I get all sorts of maybe answers. I don't think anyone really knows.
The one thing that makes me feel better is warm weather.
Thanks for your kind words, and good luck to you too. Getting old is not for sissies.
Jeff

Jump to this post

@jeffrapp
Art Linkletter was right about “Getting old is not for sissies”
I enjoyed his shows, we’re dating ourselves Jeff.
Enjoy your drink and I’ll enjoy my candy.
If you like warm weather move to Furnace Creek, Ca in Death Valley. Your tootsies will stay nice and toasty there.
Jake

REPLY
@wilcy

Hello Jake! Yes, b12 , d3 etc have all been ckd! All good! I take lots of supplements including b12! I eat very healthy! No diabetes! Just old mistreated back! Not going to stop sitting on porch in afternoon having a drink! Too old!

Jump to this post

@wilcy You enjoy a few drinks in the afternoon. The relaxing and a dull of pain for a bit is probably as good medicine as any prescribed and has less negative effects than some of the medicines we put in our bodies. Just be sure not to drive a vehicle. Sounds like you have a good diet and are taking needed supplements. When they say alcohol can contribute to neuropathy they are talking about the alcoholic who drinks their meals and are not putting any nutrients in their body. Eat heartily and drink responsibly and enjoy your afternoons.

REPLY

Tks for reply! Will be interesting Tuesday to have surgeon look at yesterday’s mri!

REPLY
@jimhd

@tigreyes2004 I take a few meds that can be constipating. I have a history of intestinal surgeries, peptic ulcers and for adhesions. I've gone to the ER several times for bowel obstruction, so anytime my stomach hurts, my first thought is, not again!

I take a tablespoon of Lactulose ( it comes with various names), and I have good bowel movements as a rule. If I can't have one, I take a little more Lactulose. I actually like the flavor, but my brother, who has less than 10% liver function, has to take a larger dose several times a day, and hates it. I've found that if I eat a small piece of chocolate before I take it, it enhances the flavor.

The Lactulose I take is a prescription, so it's paid for by Medicare and a supplement. Of course, there are many constipation treatments out there.

Jim

Jump to this post

That you for that info. I am a senior so that is good Medicare will pay for it. The Mir a Lax is a little expensive. What do you think of milk of magnesia?

REPLY

My name is Diane and I am very happy to have found this group. Even though I have been in the group just a few days I can see how members are caring and supportive. I was diagnosed with idiopathic peripheral neuropathy about 18 months ago but it has only been in the past couple weeks that the burning pain has increased substantially, especially in my feet and ankle areas. When I last saw my neurologist he gave me a prescription for Duloxetine. After reading about the drug and it’s possible side effects I decided not to take it but that was before the symptoms got worse. This may have been a previous topic of discussion but I am wondering if anyone who has tried this drug can comment on his or her experiences with it.

REPLY
@sunny2

My name is Diane and I am very happy to have found this group. Even though I have been in the group just a few days I can see how members are caring and supportive. I was diagnosed with idiopathic peripheral neuropathy about 18 months ago but it has only been in the past couple weeks that the burning pain has increased substantially, especially in my feet and ankle areas. When I last saw my neurologist he gave me a prescription for Duloxetine. After reading about the drug and it’s possible side effects I decided not to take it but that was before the symptoms got worse. This may have been a previous topic of discussion but I am wondering if anyone who has tried this drug can comment on his or her experiences with it.

Jump to this post

Hello Diane @sunny2, Welcome to Connect. I also have idiopathic small fiber peripheral neuropathy for over 20+ years but didn't bother to get it diagnosed until a little over 3 years ago when it started progressing up into my legs. I only have numbness and I knew from talking with my primary care doctors there wasn't anything that would help with the numbness.

@artscaping and @annoranna have talked about using Cymbalta (duloxetine) in other posts and hopefully can share their experience with you and any side effects they have experienced. Which side effects of Cymbalta worry you?

REPLY
Please login or register to post a reply.