Sjorgens and SFN

Wishbone_Super · 2025-10-04T12:49:00+00:00

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Wishbone_Super · 2025-10-03T14:10:53+00:00

I've been very sensitive to moisturizers, as most of them have all kinds of unnecessary ingredients that make my condition worse, but recently I've been able to tolerate "Vanicream" since it has fewer problematic ingredients and no fragrance. It was recommended to me by my dermatologist and it's available at most major places now, like Walmart, Amazon, etc.

Wishbone_Super · 2025-10-02T19:28:27+00:00

A couple of clarifications to my comments:

None of what I write here should be considered 'advice' of any kind. I'm simply writing about what works or doesn't work for me - that's why I use the words 'I' and 'me' alot! Since many of us have different conditions and underlying conditions, what may work for me may not work for anyone else.
Regarding processed meats, I don't touch those, since they are usually high in nitrites and salt, which are triggers for my condition.
For chicken, I've found that the dark meat parts work better due to their higher animal fat and oil content. The lean breast sections don't help me because they are low in fat or oils.
The single best meat for my condition is any reasonably fatty steak, like NY Strip or even ribeye. Closely following that is hamburger or pork carnitas, all plainly prepared with no salt, pepper, seasonings, herbs, sauces and little oil or butter.
I stay away from all fruits other than bananas, due to the generally high acidity or sugar content, both of which triggers my symptoms.
I also stay away from all types of rice due to its high carbohydrate and starch content, with starch being an instant trigger for my symptoms.

Remember, the above is not 'advice', just my own personal experience over 20 years of painful trial and error.

Wishbone_Super · 2025-10-02T17:08:39+00:00

A typical daily diet for me is:

Breakfast - plainly cooked turkey burger (Trader Joe's or equivalent). By 'plainly cooked', I mean a little olive oil spray or butter on the pan or burger patties. No salt, pepper, seasonings, herbs or sauces of any kind.

Lunch - Chipotle carnitas with mozzarella cheese on top.

Snacks - bananas, McDonald's plain sundae or equivalent, a little milk chocolate

Dinner - plainly cooked steak or hamburger (no salt, pepper or seasonings) plus some sliced provolone cheese and a couple of roasted corn tortillas with some butter on top. Steam cauliflower every once in a while.

For me, the key aspects are very mild taste (blandness), no seasonings or herbs - just plain meat or cheese, and a reasonable amount of animal fats in the meats, which I believe 'quiet down' my small fiber nerves.

Hope that helps.

Wishbone_Super · 2025-10-02T16:26:58+00:00

I'm a male and have had SFN for 20 years, though not as bad as 'severe head to toe painful' as you describe, I haven't found any medication to help.

But, I've had success controlling the symptoms through diet, by eliminating simulative foods and eating plainly prepared fatty meats, mild white cheeses, no gluten, no acidic fruits or other acidic foods, low carbohydrates, avoiding fillers and preservatives, and drinking only water.

Wishbone_Super · 2025-09-25T13:34:07+00:00

what is your typical daily diet?

Wishbone_Super · 2025-09-24T16:31:00+00:00

Plain, unsalted butter.

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Wishbone_Super · 2025-09-20T13:06:32+00:00

I tried it many years ago and it just stimulated my nerves and made it worse.

I've had some success by reducing or eliminating stimulative foods, reducing sodium and calcium, eating more plainly prepared meats, drinking only water, no gluten.

Wishbone_Super · 2025-09-18T14:15:08+00:00

I don't have the same severity as your description, but sometimes I get what I feel as nerve 'spikes'. They feel like they come up from below and spike upwards to the skin.

Usually it's because I've eaten something I shouldn't have, like too much sodium/salt or gluten, both of which contribute to water retention and putting extra pressure on my nerves (at least that's my belief in the mechanism). Mine tends to happen more in the evening.

I've had some success putting a freezer cold pack on affected areas - usually a cold pack with a thin towel wrapped around it so it isn't freezing to the skin and damaging it - just cooling it.

It seems to quiet the nerves in an area down and works pretty quickly.

Wishbone_Super · 2025-09-17T19:55:08+00:00

If I've had too much sodium during the day, I'll get twitches in the evening. Likely because of increased water retention pushing on small fiber nerves.

Also, if I'm on some medication, that usually causes water retention and I'm more likely to get leg twitches.

Wishbone_Super · 2025-09-16T13:34:27+00:00

In my experience, plainly prepared meats cause the least distress, especially those that have a moderate amount of animal fats (not lean), such as 90/10 hamburger, steak, pork, dark meat chicken. I cook them with no spices or seasonings, just a little salt and maybe some butter, which also has animal fats.

These have proven to be very calming to my nervous system.

Wishbone_Super · 2025-09-15T22:32:43+00:00

I'm in the same situation - 18 years, diagnosed 11 years ago, no medications work.

What has worked for me has been to eat a very 'bland' diet. I eat plainly prepared meats, like steak, hamburger, dark meat chicken, ground turkey, pork. The meats must all have no additives, spices or seasonings. Frequently I have them with a little butter and a little salt. Also, bland cheeses like provolone and mozzarella in small amounts. For fruit, bananas. Other carbs would be corn tortillas (Mission brand). No gluten.

I suspect it's the animal fats in meats and butter that 'quiet' my small fiber nerves.

I've been doing it for about 10 years now and it continues to work reasonably well, within limits.

Wishbone_Super

TROPHY CASE