Diet Success Stories for PN?
 

I'm newly diagnosed with Idiopathic PN and have been doing lots of homework. I've begun a decent supplement regime per all the advice given on these forums, and have adopted a strict gluten free, low sugar diet. I'm beginning to consider dropping dairy and grains.
I'm looking for a little guidance now which I'm having trouble gleaning from anywhere:
1. Many of you talk about PN "flares." My symptoms are pretty constant, a bit worse at night when I'm thinking about them. I know what "flare" means, but curious: are these daily? last a day? week? month? I'm wondering how these work in with trying to evaluate getting better or worse.
That all leads to this question:
2. I've read, should gluten be an issue of PN, that one wouldn't know for up to a year or more, due to the time needed for nerves to heal. I understand this, am following this wonderful (healthy!) diet, but would love to hear some stories of success. I've read success with low sugar, and of many who are adopting different diets. What are your results?
Determined to contain this thing, starting early, and thanks you all for being out there.

Welcome Chicosalt, but I'm sorry you find yourself here.

My flares are not daily, but usually a day or a sequence of two or three days maybe once a month. My symptoms intensify across the board for no discernible reason.

Congrats on making your dietary changes. I've not gone the gluten-free route, although my diet is mostly gluten-free on a daily basis anyway.

When I first developed SFN back in late 2013, I was on a high carb diet, but what I would consider have considered "healthy" carbs...lots of whole grains. Early on, my symptoms were really quite awful. I couldn't sleep, and when I didn't feel like I was on fire, I felt like I was plugged into an electrical socket. Something, be it dietary changes (going low carb), or the supplements, or HRT, or some natural waning of the symptoms, caused me to improve in 2015, and I've stayed improved. Maybe it was a combination of things, but whatever, I'm afraid to stray from my regimen much.

That being said, my carb consumption has gone up as I know what types of carbs to avoid to avoid blood sugar spikes (grains and sugar mostly). I've re-introduced legumes in reasonable quantity, and no longer boycott healthy higher carb vegetables like carrots.

Staying hydrated and keeping my electrolytes in balance seems key for me. One of my most problematic symptoms is horrendous cramping in my feet and lower legs when I let things get out of whack.

JanieG:
Funny how a post on a forum feels like the best gift ever! Thank you SO much for replying!
I will read this ever so closely many times, dissecting every point you made. I'm a year into this beast with minor symptoms so far- burning and uncomfortable, random shocks, but enough to disrupt sleep and cause anxiety.
Did you avoid all grains? Were you attentive to dairy? Coffee? (Part of my problem is husband, who is supportive so far, but a bit leery about how much modification he'll "listen" to :o As such, I'm trying to be clear and accurate about A PLAN.)
More armor for my arsenal!! Your response was pretty comprehensive and I thank you again, JanieG, but must add: If you think of anything other little thing, lemme know!!

I have mild PN in my hands which is possibly a relic of when I used to abuse alcohol.

I have been taking taurine (1 gram/day) for a couple of months. It has helped with my tinnitus and I have also noticed some improvement in my PN.

There is some evidence that taurine can help with diabetic PN Taurine for painful diabetic neuropathy - Neuropathische pijn.

More generally, this link (courtesy of mrsD) is worth checking out for information about taurine The Forgotten Longevity Benefits of Taurine - Life Extension.

Some people react to foods with tingling, etc. Nightshades (including hot sauces and peppers) can be difficult.

MSG in processed foods is also a trigger for some.

Histamine containing foods also can cause problems.
More on histamine here:
http://www.neurotalk.org/pn-tips-res...ight=histamine

One has to keep a journal of foods eaten to find correlations with symptoms. Sometimes it takes several hours or a day before the reaction manifests.
If you eat something every day... hot sauce at least once a day for example, stop it for 2 weeks, see how you change if anything, and reintroduce it. If you react to it, then that is an answer for you to listen to.

The taurine is a good thing to try.... at least 1000mg a day. I used to use 500mg a day for my gall bladder and didn't notice any other benefits. But raising to 1000mg a day was enlightening, as Kiwi says. Taurine stabilizes nerve membranes, and helps with insulin resistance, and improves bile flow for GI stability.

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.

Are you craving the salt? And is that why you overdo it?

I don't know if it's a craving or a preference. I've never had a sweet tooth and can blissfully ignore desserts, candy, doughnuts, etc... Put a bag of pretzels near me, though, and we have a problem.

Unsalted meat? Ptooey!

Do you know of a condition that makes you crave salt?

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

Hi Chicosalt,

I also have idiopathic sfn of the full body type.

When my neuropathy first became constant, I had a 3-4 month flare where the symptoms began and slowly increased in intensity and location (feet, hands and mouth) for several months. They then were static for about 9 months.

After that I experienced a fairly rapid body-wide spread and increase in intensity over a period a couple weeks. This occurred over a year ago. That was a major flare. Since then, it's been difficult to identify a flare as it's tricky with a full body paresthesia/numbness to detect subtle changes in intensity. I do know it is slowly getting worse, and I have not recently experienced a break from increasing symptoms for more than a few weeks. So I could argue I've been in a slow flare for over a year.

When this began I tried changing my diet as my A1C was 5.7 or just barely borderline pre-diabetic. I'm already thin, and exercise regularly so a change of diet was my only real option to reduce it. I knocked out as many carbs as possible, even went gluten free for 6 weeks, with the only result of unwanted weight loss. I had no change in symptoms.

I wouldn't let my experience discourage you from tackling this head-on. With hundreds of different types and causes of PN, we all can expect to have different reactions and results to suggestions and recommendations of doctors as well as members in this forum.

I have two suggestions that I wish I had implemented when this first began.

Keep a food journal (as mentioned by mrsD)
Keep a symptom diary

The only negative to the symptom diary is it will keep your mind focused on your problems which is not necessarily a good thing. I've found my best periods of remission are when I'm very preoccupied and can forget about my issues. However, the value of the symptom diary has increased over time as I'm able to search for a keyword symptom, realize it has occurred before and subsequently subsided. So it's been reassuring to me many times.

I wish you the best of luck on your journey, and hope you find some measure of relief.

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.

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.

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.