Living with Neuropathy - Welcome to the group

Unfortunately, one can find out the hard way with flare ups. I stick mostly with soy products, beans, and duck for protein. I only cook meat in sauces, beans, casseroles, so it limits the amount of protein I get in a single meal. Maybe that helps? It’s great you perceptive and tracking! Do you take cherries?

I’m also fairly thin, 5’ 5”, 107 pounds. So, I do a protein drink made with Orgain protein powder each morning to supplement. It’s a natural product and the plain flavor has no sweetener. It hasn’t thus far, anyway, bothered me.

Let me know if you find more useful info to share!

@theodore1238, My neurologist basically told me the same thing, there's nothing he can do to help with the numbness and said just to call if it gets worse. That's what brought me to Connect and searching for what coud help. The Foundation for Peripheral Neuropathy has some information on exercises that might be helpful here -- https://www.foundationforpn.org/living-well/lifestyle/exercise-and-physical-therapy/

They had a webinar on May 21, 2021 you might find helpful also.

So, is thee a widely held view among neuropathy patients that diet change provides big improvement in symptoms?

Don't laugh... I may have hit on something by accident that might help some of you. Most nights I use a foot cream on my "neuro-pathetic" feet just to keep them soft. I have the type of neuropathy that causes me to feel everything; for example - I can't stand on the bathmat in my tub/shower as the little nubs really hurt. I get sharp, shooting pains in my toes and it wakes me up at night several times. I've tried gabapentin - didn't work at all! SO... the other night, I picked up my Ben Gay - by accident - rather than my foot cream and before I realized my mistake (how'd you miss the smell?) I had rubbed it on my foot and ankle. It felt kinda good... so I rubbed it on the other foot. I slept through the night. The first time in many a month. I thought this likely was a fluke, but decided last night to try it again... it worked again and today both feet feel some better. Usually, night time is when my feet bother me most so I was delighted. Don't know if it is a fluke or not, or if the Anti-neuropathy fairies have visited me while I sleep (I'm Irish so it could happen) but it seems like a cheap thing to try. I know it sounds goofy but if putting a bar of soap between your sheets wasn't considered too "strange" a suggestion - maybe this might work for somebody besides me. I doubt whether it would work on feet/ankles etc. that have open sores, though... that might really hurt.

Thanks for the tip, I will try it! Sleeping through the night is one of my biggest problems. I can sleep about 3 hours before my feet & hands wake me up with being almost completely numb! Lidocaine cream helps sometimes & found a 5% Lidocaine gel which works slightly better.

Thanks for the tip, I will try it! Sleeping through the night is one of my biggest problems. I can sleep about 3 hours before my feet & hands wake me up with being almost completely numb! Lidocaine cream helps sometimes & found a 5% Lidocaine gel which works slightly better.

Thanks for the suggestion. I checked out the ingredients and the only one I could be allergic to are chia seeds. I have multiple allergies, and can be allergic to almost anything...and have! So I will try to locate another protein powder. Now if I could only remember the one I used to take?
I do use buckwheat which I find very good for health. I eat it as a cereal and also can be used in many vegetarian/vegan recipes.
Take care.

Ugh. I’m sorry you’re allergic to so many foods. I eat a lot of chia seeds and nuts. I’ve used a protein powder with just peas as the source; maybe that could work for you. I haven’t tried buckwheat…thanks for the suggestion. I put it on my shopping list. I do cook hulled barley once a week and eat it mixed in with soup or even fruit salad. Very healthy.

@auntieqd @mfobrien36 I have small fiber peripheral polyneuropathy, and it shows up mostly in my feet and ankles. It began in my toes and heels, but has gradually taken over both of my feet and has been making its way up my legs. So far, above my ankles, I just have pins and needles usually, up to my groin. I tried every medication my numerous doctors have thrown at me, with no pain relief except for morphine sulfate contin.

Capsaicin works for some people (not me - it just burns), but lidocaine cream 5% numbs my feet and ankles so I can go to sleep.

In 2017 I had a spinal cord stimulator implant, and it was wonderful! I'd forgotten how it felt not to be in pain. Unfortunately, after a year it started losing its effectiveness, though I still have it, and it probably helps a little. Last year I had a dorsal root ganglion stimulator trial, but it had no effect.

Four months ago I started IVig infusions, and the 4th round of infusion last Monday and Tuesday has brought me some good relief. The pain has been way down to 2 or 3! I still have the annoying pins and needles, but the burning pain is nearly gone. My neurologist said that I'll know it's working if the pain is reduced for 2 or 3 weeks, and then the 4th week will be back up to 7-9 pain level. I REALLY hope it continues to work.

I've heard that Blue Emu works like lidocaine cream for some people. Have you soaked your feet in cold water? It has numbed the pain for me for an hour or so. The other day I took off my slipper sandals and walked in the snow barefoot for a few minutes. It felt kinda good, actually. I remember doing it when I was a kid, living in upstate New York.

Have you tried doing a really light massage on your legs? I find different places to tickle/massage, and I feel a pleasant feeling in my feet and ankles. I use a telescoping back scratcher and just slowly slide it up and down, using just the weight of the scratcher, with no pressure. Kinda strange the things we find that either relieve the pain or distract us from it.

BTW, I switched from morphine to buprenorphine a few months ago, but it doesn't do the job that morphine did. It's an opioid, but behaves differently from morphine, and I guess it's supposed to be better for sfpn. I'm not convinced.

Cherries. Are maraschino cherries OK? I'd happily eat a bunch of those every day.

Gotta stop writing and get to sleep. I think my Bipap machine helps me sleep through most of the pain.

Jim