Coconut water

[mmjxc]

I read a post from a while back on here about a guy that had gotten RLS when he had a nasty case of the flu. He talked about how beneficial coconut water was for his RLS. I was skeptical of course, so I looked it up. Pregnant women use it sometimes for the potassium and everything. Since it’s packed with electrolytes and all that stuff, I had my mom pick up some from the store. I’ve been craving anything but water, so I let it cloud my judgement. I drank maybe 1/2 cup (don’t know what that is for you guys) and now my arms are kind of acting up. It tasted so good though.

I don’t know how to get what I need into my body. I need vitamins and electrolytes so bad but it seems like everything is a trigger. I’m so sick of this. I just want my life back. I might take some hydrocodone soon to knock the restlessness back down.

Also! I have no clue why, but I feel like more things have triggered it. Maybe my iron stores are just constantly depleted and since I don’t eat at all, there’s no way to replenish it. I wonder if this makes me more susceptible to triggers like sugar, carbs, etc? I might try eating some unsweetened apple sauce tomorrow and see what happens. The next day I might try an orange (if I’m not in surgery). Or a banana, I see a lot of people here are able to eat bananas. Maybe some pure cranberry juice? There’s all of these diets, but I haven’t had anything solid in my stomach for over 2 weeks. All I drink is water.

Oh!! And these sugar free ice pops look so good. All I want to do is eat ice, and all I’m craving is fruits and sugars. But they’re sweetened with aspartame. I’m so irritated and hungry. And my body probably needs the sugars. Idk what to do anymore.

This is all so, so weird. When I struggled with RLS last time, I remember I started gobbling vitamins down every day, ate a BUNCH of fruits, infused my water with mint and lemon, drank orange juice constantly (especially when I was having flare ups). It all helped eventually. Now I can’t stomach anything. I don’t know if the triggers are psychological or what, but it’s confusing. That was only 3 years ago.

[Hidden]

I believe this is what you are referring to. Interesting stuff and very relevant. healthunlocked.com/rlsuk/po......

[mmjxc in reply to Hidden]

Yes, that’s it. I wonder why my body reacted how it did.

[Hidden in reply to mmjxc]

I wouldn't even try to figure it out. You have bigger fish to fry. The important take away from the article (I think) is that when your body feels it is under attack - be it a virus, disease process, or an overzealous gut microbiome, it lowers the "iron gate." The "iron gate" is a substance called hepcidin that the body releases in the face of an enemy attack. Every living organism (with the exception of one or two bizarre micro-organisms) loves and needs iron. One of the best and only defenses we have (besides white blood cells and fever) is the sequestering of iron so that the invader (whatever it might be) can't get their evil little hands on it and hopefully die-off from lack thereof. The hepcidin will literally store the iron away and then not allow any to be released from those stores, nor will it allow iron to be absorbed via the GI tract. Plus, even when our body senses too much iron, such as from supplements or infusions, it will release hepcidin. That's why people on here recommend taking a supplement every other day. After about 24 hours, the hepcidin that was released from the first iron supplement will have dissipated thus allowing the alternate day supplement to be absorbed. It's all kind of loosey goosey. If you're anemic or even just low on iron and take an iron supplement I doubt your body will release hepcidin and thus you're probably fine taking a supplement once a day.

I think the VAST majority of the world could come down with that exact same horrible stomach flu that the Costa Rican man did and never feel so much as a twinge of RLS. The vast majority of the world could become anemic or pregnant or diabetic or develop thyroid disease and never feel so much as a twinge. It's a "relatively" small percentage of people who develop RLS in relation to these conditions. I believe there's a spectrum to RLS. To me, RLS is nothing more than genetically small and few dopamine receptors, a lousy dopamine transport system and an iron-deficient brain, not body. Some people's dopamine receptors are really small and few while others not quite as much. These people can go through a good portion of their lives never knowing they're on the "edge". as a matter of speaking. Then boom, they get a horrible virus and there's hardly any iron circulating in their blood because of the hepcidin, and they develop full blown RLS. Once the virus wanes, and the iron returns, their legs go back to normal. I'd be willing to bet that Costa Rican man will develop RLS again at some point. Wow, long post, sorry.

[mmjxc in reply to Hidden]

No, it’s ok. Some very good points you made. Those people are lucky. I don’t even know whether I should try an iron supplement at this point. All I know is it’s almost 3 AM where I am, and I’ve been up since 1. I’m irritated with this disease. I know it’s secondary to something for me, but what? It’s almost impossible to find out. And now my body is in starvation mode and I don’t know what to do. Like, why is my body attacking itself and doing this? What could possibly be wrong with me?

[Hidden in reply to mmjxc]

I'm probably the wrong person to ask. I don't believe in primary or secondary RLS. I just believe in a spectrum. So your dopamine receptors aren't all that bad (but not as good as the non-RLS world) and it's only when you develop RLS provoking conditions or take RLS provoking substances that your RLS kicks in. When you don't have these conditions or aren't taking these substances then your RLS goes quiet. I'm also not the person to ask about iron. I take 25mg of iron (gotta be ferrous bis-glycinate) most every night on an empty stomach an hour before bed and it quiets my RLS - for the night. There's a small group of us on here who have had success, amazing success, with this method. The vast majority of people on here will tell you that it is impossible - that iron is not an RLS medicine - that only by dramatically raising your bodily stores of iron do you have a chance of it helping.

Anyways, like you, I have had various "conditions" since I was young. At first you want to curl up and hide under the kitchen table, then you become a mad scientist until you know even more than the doctors. As strange as this may sound, my life would have been terribly boring (plus I probably would have gotten into trouble and married the wrong kind of man) had it not been for these conditions. You would think all these conditions would have made me into a "warrior" but they did not. What made me a warrior were panic attacks. Not your ordinary panic attacks either. I was "taken" when they happened. Sometimes I couldn't even get words out of my mouth. Fortunately, after a few hours and with the help of cold water on my wrists or warm milk they would pass and I would be rewarded with a slight sense of bliss or relief. A friend of mine who is a "depth" psychologist said "please, just try to take a small step back and look at the panic from a distance. Miraculously, I found myself able to do this to a small, but ever increasing extent. Then I read a book by a native american woman who spoke about "the dark night of the soul" and how EVERYONE's journey on earth should include this type of "taking" where you feel as though you are dying. Her culture believes this is so important that they will actually induce these feelings in older boys (via leaving them alone without food or water on top of a mountain) so that this panic will set in. They believe this is how boys/men become "warriors." They also believe the "panic" is actually your spirit guide in disguise trying to lead you to grow and evolve and become strong of mind. The last time I had a panic attack, or the beginning of a panic attack, I greeted my spirit guide and asked "what are you trying to teach me this time." Sadly, that was the end of that. I miss that slight feeling of bliss. However, I am now a warrior. I never panic..for no good reason like I did before. Plus, when my son had his first panic attack I explained to him how it's a must. That everyone must go thru this and that it would make him a warrior. Sadly they ended quite quickly thereafter for him. I warned him (he is now 22, he was 12 then and at overnight boys scout camp) that there will be more coming his way but always remember it is a must and try to figure out what life is showing you via these intrusive anxiety provoking attacks. Yikes, yet another long post.