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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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nothing effects me at all

BadBadBear

Senior Member
Messages
571
Location
Rocky Mountains
I go between sea salt w/ iodine, Real Salt (mineral salt, no iodine, no flowing agents), and cheese salt which has no flowing agents, minerals or iodine. I use whichever type suits my taste...
 

TigerLilea

Senior Member
Messages
1,147
Location
Vancouver, British Columbia
In twenty three years of taking various prescription meds, vitamins and supplements with the aid of an internist and several NDs, taking supplements recommended on various CFS/ME groups, and trying different diets, I have never found anything that helped me at all. :bang-head: The only reaction that I've ever had from a supplement was from magnesium - it made me so sleepy during the day that I turned into a zombie. However, having said that, I still live in hope of finding something that will relieve some of my CFS symptoms, especially the fatigue and PEM. :sluggish:
 

optimist

Senior Member
Messages
434
Location
Norway
I go between sea salt w/ iodine, Real Salt (mineral salt, no iodine, no flowing agents), and cheese salt which has no flowing agents, minerals or iodine. I use whichever type suits my taste...

Thanks! I think I should experiment more with salt, because I have been eating quite little of it as I've been told its unhealthy with too much, and that we get enough through eating normal food. I suppose it may be different with ME/CFS.

In twenty three years of taking various prescription meds, vitamins and supplements with the aid of an internist and several NDs, taking supplements recommended on various CFS/ME groups, and trying different diets, I have never found anything that helped me at all. :bang-head: The only reaction that I've ever had from a supplement was from magnesium - it made me so sleepy during the day that I turned into a zombie. However, having said that, I still live in hope of finding something that will relieve some of my CFS symptoms, especially the fatigue and PEM. :sluggish:

It's strange how we are totally opposite regarding magnesium. For me when I have a good day and take 2-400mg I get too wired and almost hyper from taking it. My body gets really hot, and I cannot sleep until morning comes. So I try to take it in limited amounts when needed to bring sort of a balance.
 

BadBadBear

Senior Member
Messages
571
Location
Rocky Mountains
Thanks! I think I should experiment more with salt, because I have been eating quite little of it as I've been told its unhealthy with too much, and that we get enough through eating normal food. I suppose it may be different with ME/CFS.

I need salt for my adrenal function, I get into bad shape without it. I consume ~8-10g per day of salt. When I tried limiting salt I got really sick. Before I realized I need so much salt I was having a lot of abdominal bloating and I thought, gee, it must be my sodium intake. I cut back for two weeks and it was probably the worst I've ever felt. Generally now I realize that if I am bloated, I need more salt to pull the fluid out of interstitial space and into the bloodstream so it can get eliminated.

Ray Peat has an interesting article on salt:
http://raypeat.com/articles/articles/salt.shtml
 

optimist

Senior Member
Messages
434
Location
Norway
I need salt for my adrenal function, I get into bad shape without it. I consume ~8-10g per day of salt. When I tried limiting salt I got really sick. Before I realized I need so much salt I was having a lot of abdominal bloating and I thought, gee, it must be my sodium intake. I cut back for two weeks and it was probably the worst I've ever felt. Generally now I realize that if I am bloated, I need more salt to pull the fluid out of interstitial space and into the bloodstream so it can get eliminated.

Ray Peat has an interesting article on salt:
http://raypeat.com/articles/articles/salt.shtml

That's a lot of salt?! I think about two quarters of a table spoon...? Do you measure it up and divided it on your meals during the day? Looking at the article, and this interests me a lot:

"The increase of adrenalin caused by salt restriction has many harmful effects, including insomnia. Many old people have noticed that a low sodium diet disturbs their sleep, and that eating their usual amount of salt restores their ability to sleep."

Perhaps that's the solution to my inability to get to bad early?

EDIT: Ahahahaa :D Bed, not bad!
 
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BadBadBear

Senior Member
Messages
571
Location
Rocky Mountains
That's a lot of salt?! I think about two quarters of a table spoon...? Do you measure it up and divided it on your meals during the day? Looking at the article, and this interests me a lot:

"The increase of adrenalin caused by salt restriction has many harmful effects, including insomnia. Many old people have noticed that a low sodium diet disturbs their sleep, and that eating their usual amount of salt restores their ability to sleep."

Perhaps that's the solution to my inability to get to bad early?

EDIT: Ahahahaa :D Bed, not bad!

:D Yeah, I use diet tracking software and that gives me a good estimate of how much I eat in my food, then I always add to my water. After drinking salty water for a year and a half now, plain water tastes weird. Mostly I drink e-lytes all day of lemon/lime juice, salt, a bit of stevia. I like broth with extra salt added.

Too much salt, too fast can stimulate the bowels. Be warned. :D
 

Tammy

Senior Member
Messages
2,181
Location
New Mexico
I have also tried tons of different supplements and spent tons of money and I have found nothing that helps me either.
I will read up on something that has helped someone and think it will help me too...but nope.

I have to admit I just re-ordered Adrecore because I hadn't been on it in a long time and I really think my adrenals are flipping out again. I would rather support them then just take cortef. I also ordered a couple others to go along with the Adrecore in order to help with that.

@Tammy- I remember taking Malic Acid when I first became ill almost 10 years ago but I can't remember why I was taking it. How does it help you?

My muscles were so sensitive, stiff, knots, etc. and constantly felt bruised. It was as if all the muscles in my body felt like I had strained them in a major way. The Malic Acid helped ALOT with this and if I take enough it seems to also help (A little) with muscle strength.:)
 

Tammy

Senior Member
Messages
2,181
Location
New Mexico
I didn't notice much improvement from supplements until I added T3 for a thyroid hormone conversion issue. Now I can tell when I run out of methyl B's or when I get low on salt. My energy totally dies - sometimes that mean just going from barely any to none, but it's noticeable - like an engine turning off. It took adding T3 to potentiate the others, and I suspect T3 would cause me huge issues without proper Bs & adrenal support (aka salt).

Hopefully at some point you will find the match that needs to be struck to start the energy fire burning.

You mentioned adding T3 for thyroid hormone conversion issue......sorry for brain fog....but is that the actual name of the supplement?
 
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BadBadBear

Senior Member
Messages
571
Location
Rocky Mountains
Yeah, it's actually T3, the brand name is Cytomel, and the generic name of the drug is liothyronine. It's a doctor-prescribed med, and it's hard to get conventional docs to give it. Fortunately I found a ND who was willing to prescribe it. I had high reverse T3 and low free T3, which made me feel like a zombie. After a few months of titrating, I'm on 18.5 mcg T3 and my blood levels are in the upper quartile of the range for free T3.

I have had loads of thyroid symptoms for decades, and conventional docs just looked at my TSH (which is always 'good') and refused to treat me.

I need to look into malic acid. I get the sore bruised muscle thing, too. After working on the new floor in the front room last weekend, I am so sore I can barely walk. :(
 

optimist

Senior Member
Messages
434
Location
Norway
:D Yeah, I use diet tracking software and that gives me a good estimate of how much I eat in my food, then I always add to my water. After drinking salty water for a year and a half now, plain water tastes weird. Mostly I drink e-lytes all day of lemon/lime juice, salt, a bit of stevia. I like broth with extra salt added.

Too much salt, too fast can stimulate the bowels. Be warned. :D

I drank some diluted lemon acid yesterday and some baking soda, and man did I wake up with a bad nausea... fortunately it helped drinking a lot of water.
 

BadBadBear

Senior Member
Messages
571
Location
Rocky Mountains
I drank some diluted lemon acid yesterday and some baking soda, and man did I wake up with a bad nausea... fortunately it helped drinking a lot of water.

Hope you are feeling better today. My mom gave me baking soda when I was a kid because it worked as an emetic. Just the taste of it still makes me nauseous. Blech.
 

ahimsa

ahimsa_pdx on twitter
Messages
1,921
Just a short comment on sodium (salt) as part of a treatment plan. I don't know anything about using extra sodium for adrenal problems so I can't comment on that.

However, I have read a lot about increased sodium in the diet for patients with Orthostatic Intolerance (e.g., NMH or POTS). Here's one extract from a research paper on POTS (see http://onlinelibrary.wiley.com/doi/10.1111/j.1540-8167.2008.01407.x/pdf ):
The hypovolemic patient will do well with expanding plasma volume with generous salt intake and fludrocortisone. The salt intake should be between 150–250 mEq of sodium (10–20 g of salt). Some patients are intensely sensitive to salt intake and can fine-tune their plasma volume and BP control with salt intake alone.

Note: hypovolemic means having low blood volume.

I generally get my extra sodium and potassium through a combination of supplements (over the counter salt tablets and prescription, time-released potassium) and electrolyte drinks. I also make sure to get about 3 liters of water daily. It's no cure but it helps.

PS. I forgot to mention that I also take a couple of prescriptions, midodrine and florinef (fludrocortisone), but I think this thread was mostly talking about whether non-prescription supplements helped at all.
 
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