Living with Neuropathy - Welcome to the group

@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

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

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!

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

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!

@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

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

@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

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