NeuroTalk Support Groups - Diet Success Stories for PN?

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Peripheral Neuropathy (https://www.neurotalk.org/peripheral-neuropathy/)

- - Diet Success Stories for PN? (https://www.neurotalk.org/peripheral-neuropathy/243427-diet-success-stories-pn.html)

A quick response - I have entirely changed my diet since the summer when my PN got really bad and spread to practically everywhere. I have an autoimmune disease and I went on a paleo ketogenic diet. I do find that this really helps me, but the neuropathy does seem to be worsening, although diet keeps symptoms minimal - hard to explain.

I will tell you this, I don't think many people who have successfully addressed their neuropathy come back to share the good news on the internet. I was disheartened looking around for success stories too. I have to think that a lot of people either successfully find a "new normal" with neuropathy or address it all together. Of course not everybody does, but don't let it make you feel doomed.

Lots of interesting information to synthesize into my current supplement/diet routine; thank you so much.
I'm taking Fistfuls of pills: CoQ10, R-ALA, NAC, AL Carnitine, Benfotiamine, Methyl B12, a Complex B, K2, D3, Omegas, Evening Primrose, along with Lexapro (for years even before PN). Most I've researched; lots of Doctor's Best. I think I have it all covered, and would actually really like to cut out few. Is Taurine recommended? Again: not diabetic at all.
I also have life long anxiety, early osteoporosis, high cholesterol and now PN. I'm reading that all of these could be related to gluten and/or other dietary factors.
I will stick to the GF, low sugar, no processed foods and can drop corn, coffee, dairy and diminish salt. It's just so hard when told it'll take a year to know. Nothing I do so far has helped, nor have I really noticed a "flare."
Still reading, listening, crunching all ideas- THANKS!

Thanks, mskari85: I suspect you're correct about people returning to post with good news. Even I, with angst, was hesitant to post here (for a year!), until I realized that I might glean some good info. Indeed I am more scared that hurting today. I'll make a promise to myself and friends to get back when I have some good fodder to share!!

And thanks, Protector and MrsD: GREAT idea about the food and symptom journals. I've got a rough journal going, but will plan to be more comprehensive in 2017. Good New Year's Resolution!

And finally, Protector: You are SO interminably right!! As most of us know, evenings and nights are the worst- time to pay attention to every little ache and pain. I am quite a busy girl otherwise; wonder how to keep "dancing" until bedtime!

Chicosalt,

Be careful of the amount of B6 supplementation you are receiving from the B Complex. The recommended daily value is 2mg. Some B Complex vitamins have much more than 2mg.

If you search this forum for "B6 toxicity" you'll find lots of valuable info regarding this issue. Too much B6 can cause PN.

Thanks, Protector. Will double check my intake for sure.

Quote:

Originally Posted by mrsD (Post 1232380)

Yes, craving salt may point to an adrenal dysfunction (low).

Have you had your adrenal hormones measured?

Here is an overview about salt:
Salt Cravings: What they Mean and Why They’re Important. | Paleo Leap

and a more medical article from Mayo:
Salt craving: A symptom of Addison's disease? - Mayo Clinic

Thanks for this. I don't think I've had my adrenal hormones checked, but I'll have to dig out some results from a couple of years ago. Hormones were checked, but I don't think adrenals hormones were part of it.

Quote:

Originally Posted by janieg (Post 1232333)

I was all but hopeless and helpless until I found this forum. The people here are smart, helpful and very well informed. That's more than I can say for some of the doctors I've seen. :rolleyes:

I gave up dairy at one point, and my reward seemed to be much worse cramping. I can't say definitively that not drinking my nightly glass of milk was to blame, but as soon as I started back, the cramping frequency returned to occasional versus every night. That being said, I'm now drinking unsweetened, organic soy milk. I know some people don't like that idea either, but I'm comfortable with it. I also don't avoid any other dairy products.

My coffee consumption has actually gone up pretty significantly since I went back to work, and my symptoms definitely have not worsened.

The one thing I know is not good for the SFN symptoms is salt, and it's probably the biggest dietary problem I have at this point. When I really overdo it, there's hell to pay. I cramped up so badly one time when I was out shopping, I could barely drive. I had just enough water to get my feet and legs to a point where they were mostly functional, and then guzzled water and popped supplements when I got home. The cramping quickly resolved, but I know it was high the intake of salt that caused it. I'm much more careful about it now, but I have a New Year's Resolution to cut back and try to retrain my taste buds. That should be interesting.

The symptoms you describe are pretty much where I was in 2014, although it was so bad some nights I'd never get to sleep. The anxiety of not knowing what was wrong made things 100 times worse. Finding this forum and researching helped calm me down, and I'm sure that alone was responsible for some of my decrease in symptoms.

I continue to search for a cause, but I know the odds are slim for that happening. Regardless, I'll fight the good fight.

This just goes to show the difference in how different the metabolic problems associated with nerve damage are despite how similar the symptoms are. Low sodium diet would probably kill me. The amount of salt I have to consume to keep my blood pressure in the (still to low) normal range is embarrassing. I have to eat it, and chug electrolyte tabs. Today I had a spinach chia protein smoothie for breakfast and I'm already crashing due to the fact that I had no salt. Feel terrible. I literally have found that I feel better after a pile of chips over a low sodium grilled chicken salad, so I've learned how to use that salt shaker. My doctor says I should be on 10-20g of salt a day. It doesn't fix me, but it keeps me off the floor a little longer.

That is pretty amazing how different we are. I'm trying to detect if lower salt intake makes me feel any better, but I can't say that I've noticed anything to date. I just know that overdoing it is really, really bad.

I've ordered an exome test and am going give the sodium channel genes a good going over.

Quote:

Originally Posted by Healthgirl (Post 1232728)