The Salt Poll

[Cort]

Salt is an intriguing substance in chronic fatigue syndrome (ME/CFS). An important electrolyte it can raise blood pressure and tighten up our arteries. Some people with ME/CFS crave salt; others can't handle it at all. Where do you fit on the salt spectrum?

From Wikipedia:

Sodium is one of the primary electrolytes in the body. All four cationic electrolytes (sodium, potassium, magnesium, and calcium) are available in unrefined salt, as are other vital minerals needed for optimal bodily function. Too much or too little salt in the diet can lead to muscle cramps, dizziness, or even an electrolyte disturbance, which can cause severe, even fatal, neurological problems.[38] Drinking too much water, with insufficient salt intake, puts a person at risk of water intoxication (hyponatremia). Salt is even sometimes used as a health aid, such as in treatment of dysautonomia.

 

[Sing]

Good subject, Cort!

I eat a lot of salt, though not really out of any craving but out of a need. My blood pressure ranges from low to normal. The salt definitely helps with (but does not eliminate) the dizziness and orthostatic intolerance. This in turns helps some with fatigue.

My adrenals don't function well/or aren't being signalled to do so. This affects cortisol, adrenaline and the other hormone which helps retain salt, apparently. I crave water and urinate a lot, and was diagnosed by an Endocrinologist with "Partial Central Diabetes Insipidus". Dr. Hyde wrote that this diagnosis is often made, incorrectly, with ME, as the problem isn't the pituitary but....(I forget). In any case increased salt helps this.

As you posted elsewhere, I too have felt that there is something definitely wrong with my brain, the top of the line, and that ME/CFS isn't a little of this, a little of that. But XMRV also offers a top of the line explanation as a retrovirus affecting the nervous, immune and other systems.

Cecelia

 

[caledonia]

I have adrenal fatigue - one of the symptoms is craving salt or salty foods (I crave potato chips). So the thing to do is feed the craving because apparently the adrenals need salt to operate.

I take 1/2 tsp of sea salt dissolved in a cup of water 3 times a day. If I'm out somewhere and I'm starting to fade, the sea salt water can revive me. Sometimes I'll bring along a little packet of salt that I can add to any water.

 

[bluebird]

I love salt and salt loves me. When I was able to get cleocin IVs my theory was that the saline solution is why I felt better just sitting in the chair and for about four hours after getting the IV. No way could it have been the cleocin.

 

[Victoria]

I like salt also, but only freshly ground rock salt. I sometimes cook with organic celtic sea salt.

When my BP (& heart) were playing up, I thought maybe I should cut it out altogether, but really missed it for that week I did cut it out.

I do find that the rare times I eat processed food, that it's too salty for me, so perhaps while I do grind salt on my meat/fish & vegetables, maybe I actually get far less salt than people who eat processed food.

Perhaps we should give in to some of our cravings, because it's nature's way of telling us we are either deficient, or need some extra on that particular day.

Victoria

 

[cfs since 1998]

I don't necessarily crave salt but I definitely feel better if I eat something salty especially for breakfast. Most mainstream breakfast foods in America are not very salty (not to mention unhealthy), so I often eat leftovers from the previous day's dinner for breakfast, since "dinner food" is often salty. Sometimes I drink salt water but not that often. If I eat anything remotely sweet in the morning I nearly pass out. Also I agree with the previous comment that processed food is too salty so I eat homemade food as much as I can.

 

[Cort]

I just have to have salt. I think I'm using more and more salt all the time actually. Ever since I got CFS I've needed salt. My blood pressure remains fine.

I have low cortisol. When I get cold for some reason I have to urinate frequently - don't know why that is - or if that has to do with anything.

 

[margib]

i heart salt. i salt pretty much everything. i haven't been able to tolerate salted water, but i sometimes put a little salt in my juiced greens. i'm interested in all this new salt the raw food people are into. i don't know much about it. i don't think it's pink salt, so not too expensive. himalayan, maybe? PM me if you know stuff about raw foods (only if you are into it; i know enough of the down side for us people)!

 

[starryeyes]

I've always been a salt-a-holic. Pass the salt please!

It makes me feel better especially when I feel very dizzy. It gives me energy too. I use La Baleine salt: http://www.saltworks.us/shop/product.asp?idProduct=63

Oooh... look at all these different salts.. I see the Himalayan Pink Salt here too:

http://www.saltworks.us/shop/category.asp?idCat=1

Cort, not sure what it has to do with salt but one of the signs I've caught yet another flu is frequent urination especially now that I've relapsed.

 

[Dainty]

Every since I can remember I've needed to add some salt to my food at every meal, to the point where spending the day at a friend's house where they did not have any salt would make me ill. When you're planning your schedule around how long you have to go without salt, you know it's pretty bad. Of course, they told me I had just "developed a taste for it" and that it was bad for me and I needed to just break the habit.

When I became bedridden my need for salt skyrocketed--I would eat with salt right next to me and add it continually to my food as I ate, and my water had added electrolytes as well. I tried decreasing it a few times, and it always made me worse. At one point I tracked my sodium intake for a day, and discovered that I was consuming well over twice the absolute maximum amout of daily sodium recommended by the "experts" every single day. But around that same time blood tests revealed that my sodium levels were "normal". I found that fascinating.

As I have become less bedridden, I have found I no longer need the electrolytes in my water, except on occasion.

In the past few weeks I've been experimenting with salt. I find that the more I "force" myself to rest the less salt I seem to need. When I spent a couple days doing nothing but resting even though I could have been doing things around the room, I could begin a meal without any need for salt, but within about five minutes I would begin to need it, and more and more as the act of chewing my food exhausted me. I found that if I stopped eating the second I felt the need for salt and instead went back to resting (lights out, eyes closed, not moving, breathing deeply and slowly) then I could get by on this routine without feeling the need for any added salt at all. However, with this approach I couldn't eat enough--eating is just such an exhausting activity. So now I'm back to salt on my food.

Anyway, I'm pretty confident in my body's indications of whether or not I need salt and in my own awareness of it. I'm glad to see I'm not the only one who has experienced this relationship with salt, because it seems like all I hear about is how everyone should always be decreasing their consumption of it!

 

[margib]

I've done 2 circadian cortisol saliva tests & blood cortisol tests. Normal, so they said! I've been told my blood potassium level is fine, but what do they know. perhaps i need more than the occasional sweet potato!

 

[Lelvina]

I have adrenal fatigue - one of the symptoms is craving salt or salty foods (I crave potato chips). So the thing to do is feed the craving because apparently the adrenals need salt to operate.

I take 1/2 tsp of sea salt dissolved in a cup of water 3 times a day. If I'm out somewhere and I'm starting to fade, the sea salt water can revive me. Sometimes I'll bring along a little packet of salt that I can add to any water.

I'm very similar -- if I don't take a bit of salt every day, I start to crave tortilla chips (with salt on them).

I take about 1/4 - 1/2 tsp sea salt (RealSalt) every evening.
Gargling with salt water sometimes helps me.

I also put salt on tons of food items -- just about everything.

 

[margib]

sarahg, can you recommend a brand of coconut water you like, or do you just make your own? also, i need help opening my thai coconuts. suggestions?

 

[sarahg]

Harvest Bay is the cheapest one that's not yucky or filled with preservatives. There are others that are good but they cost too much. If all else fails, get a green coconut and drill a hole in it, drain the water to drink and when you're done you can saw or ax it in half (probably put someone else in charge of that) and then you can scrape out the jelly and eat that- also very nutritious, and a fun food for kids, so you may want to share!

 

[flybro]

Salt helps

I find that salt helps.

My blood pressure has often been low, I incresed my salt because I knew my MotherInLaw had high blood pressure and had to restrict her salt intake.

I also thought its was a good idea as I lose so much salt in sweat. I have often had salt chrystal tide marks on my clothes, pillows, duvet and sheets.

I am also always thirsty, and yes I was thirsty before I increased my salt intake.

 

[starryeyes]

Don't forget- coconut water is the only nature occuring substance with balanced electrolytes. great when you are dehydrated! In an extreme emergency, it can apparently be used intravenously in case of blood loss instead of plasma. Don't try that one at home!

I'd never heard that before Sarah. I'm going to add coconut water to my shopping list right now. Thanx.

tee

 

[Sing]

Reply to Athene

Have any of you had your cortisol level measured? Cortisol is needed for the body to retain sodium and if you have low cortisol, salt drains out in your urine. People with Addison's disease eat extraordinary amounts of it and can go into a coma easily if they don't (while they are not in steriod treatment, I mean).
I am soon to go on hydrocortisone because my cortisol level is severely low and I am curious to see if it reduces my obscene mania for salt. I shall report back...

Another point is potassium. Sodium and potassium work together to maintain the right amount of fluid in the body's cells - one inside, the other outside. Potassium deficiency (which many PWCs have, I am told) can influence your desire for salt, to try to compensate. I take a potassium supplement along with all my salt, to try to raise my blood pressure, which used to be about 85 over 50 and is now often as high as 100 over 60. This is still low but it makes the difference between being able to stand up or not. DO NOT take potassium if you have high blood pressure, by the way.

Athene

Dear Athene,

I think the salt needs come from low adrenal functioning, but my understanding is that it is not cortisol but another of the hormones the adrenal glands put out that retains salt and water in the body. This is an expensive hormone to replace and I haven't heard of many people on it. Mostly people just go with the flow and drink the water and eat the salt.

Balancing the sodium with fresh fruits and vegetables, for potassium, is great. There is also a Lite Salt product from Mortons which is a combination of sodium and potassium chloride, half and half--so this helps too, probably.

My understanding is that the brain and then pituitary are not signalling the adrenal glands appropriately to put out their hormones.

Adrenalin, another famous adrenal hormone, also is lacking in my repertoire. No functional flight or fight. Something in me tries to do this but it fizzles and I end up exhausted.

I take Cortef and it replaces cortisol but cortisol doesn't do everything. It doesn't take care of the salt or water issues and it doesn't take care of the adrenalin response either.

Cecelia

 

[starryeyes]

That sounds right Cecelia. Good job explaining all that.

 

[BEG]

Has anyone used florinef with success?

 

[starryeyes]

I've read in the past that Florinef helped some PWC for awhile and then became contraindicated for them, meaning it caused them more problems and stopped helping. That's a typical reaction for most treatments for CFS I'm afraid.