OI very connected to fatigue - why?

[stefny]

I can't do sports drinks because of the sugar, either. The exercise physiologist suggested Electro-Mix which is only very, very slightly sweetened and that with stevia, so not sweet at all.

I haven't tried sodium/potassium tablets, yet. How much do you take -- as in how many mg each Na, K?

My daughter had good luck with Florinef, so I'm hoping it might work for me. I was told that it's impact on the immune system is small (relative to other steroids), but that could still be too much for some of us. Now that most of my infection-type symptoms are much improved, I'm hoping I can tolerate it. We'll see what the doc says.

Don't do sugar either, but tons of stevia. Thx. for posting the Electro-Mix. Will look for it. I'm glad your daughter is doing better on Florinef. I'm wondering about the immune thing as I'm feeling more viral/exhausted/sick since starting the florinef tho... maybe less fainty. I'll take the fainting stuff over feeling like I have cancer. Wish there was something else.

 

[stefny]

I laughed out loud.

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I'm using a Polar H7 (uses new low energy Bluetooth) and an iPhone 4S. I believe it can connect to most new smart phones. I use a free exercise tracking app called Digitfit.

http://www.polarusa.com/us-en/products/accessories/H7_heart_rate_sensor

http://www.digifit.com/

When I am better I use it to track recumbent exercise (I have a recumbent bike) a la the Levine exercise program. When I am worse I do things like stand up and watch it jump to 130-150 and then print it out and yell at my doctors.

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I have heard mixed things on the potassium as well, but honestly I haven't noticed a difference. Was following Cheney's recommendations from here:

http://www.dfwcfids.org/healing/gokhmbrw.htm

but now I just take thermotabs which I believe have mostly sodium with a bit of K.

Thanks thanks thanks Erist. Did you say you are NOT taking the florinef? Sorry, my brain fog is so bad I get so confused reading all of these things. Just the thermotabs work? Cuz I'd like to quit the florinef as I don't think it's helping/may be making things worse. Wasn't finding a lot of relief from salt/water all day and the going to the bathroom was driving me nuts. I'll look intot he thermotabs. Thx. for posting Cheney stuff/tracking apps.

 

[erist]

I am not using Florinef, no. My POTS is about 60-70% better with just the salt/potassium/water + raised bed + frequent recumbent exercise. It is still quite bad (as you can see) on days where I am very fatigued, or when I eat something I seem to be a bit allergic to, etc. If salt+water isn't helping, not sure the thermotabs will, but they are pretty cheap, worth a try.

 

[erist]

If I am correct in my hypothesis (see post here) then both OI and fatigue are caused by mast cell activation. That's why they come together.

Another theory to examine! Thanks, will check it out