Sunday, March 03, 2013

But Can He Walk on Water?

For about ten years, I've been suffering from fibromyalgia.
It sucks.
There are real miracles, though...
I've been in pain pretty much constantly, tired, lacking energy.

The psychological aspect is somehow worse - People see me as the type of person who's lazy, sleeps, sluggish. That's actually not who I am. I'm a bubble of energy. I used to get up at 6:30 when I only had to be at the bus stop at 8 because I liked hanging out at the bus stop with my friends.

My favorite place was the pool. I was always trying to improve my stroke, do more flips, always in motion. I'd walk anywhere with friends. I remember the hardest part of Shabbat morning being that I wanted to DO SOMETHING, GO SOMEWHERE. I once walked three miles along nasty highways when I was in highschool, just so I could hang out with a friend on Shabbat.

Saturday nights, I'd watch Saturday Night Live, go to sleep at 1:00am, and wake up raring to go by 8:30. Sleeping in meant sleeping all the way until 9am. I couldn't understand how people could sleep away their days.

That's who I was. And then my thyroid died. Sixteen years ago, I suddenly went from the person who was dying to get out, move, do something to the person who just wanted to sleep through life.

I trusted my doctors. I didn't really know any better. I read an article online about myxedema coma and got so scared that I didn't want to know any more.

I've been gaining weight, the pain's been getting worse, and I've had less and less energy.

I started really doing research about what is helping people who have fibromyalgia, brought information about new experimental treatments to my doctor, but he wasn't eager to run a lab experiment on me.

Finally, I found a doctor who is willing to try experimental treatments. I'm feeling better.

Here are the changes:
First, and I suspect this is most important, he added t3 to my thyroid regimen. Basically, the thyroid produces t4, and the t4 is changed into t3 in the blood. T3 is one of the things that fuels the body, so it's pretty crucial. Standard treatment is to provide t4 and assume that the body will turn it into t3 (Synthroid, eltroxin, euthyrox - all t4, not t3). Almost immediately, I started feeling more alert when awake, and I'm fairly certain that's the action of the t3.

Second, pretty much everyone has a vitamin D deficiency. I did know I had it, but this doctor decided to increase my vitamin D doses by quite a lot (I'm taking 4000 iu now, compared to 400 that my regular doctor prescribed)

Third, even though my ferritin was within normal limits, he said it was on the low side, so I started taking an iron supplement (this is one supplement where not all are created equal, I had to shop around a bit to find one that didn't give me really serious digestive issues).

Fourth, I am no longer taking any painkillers, but I am taking hydrocortisone daily (20mg), which is supposed to boost my adrenal system. (Not sure I believe in that)

Fifth, and this is what he claims the 'treatment' is, he gives me guaifenesin, which, according to a theory laid out by Dr. St. Amand, removes excess phosphates from the body.

I looked up this article which thoroughly debunks that theory. There are, however, two other theories as to why guafenesin works - one is that it helps clear the airways during sleep to promote better quality sleep. The other is that guaifenesin is actually known to be a muscle relaxant and to improve pain relief.

Here's the thing - After 4 months, I can live my life without the etopan and tramadol that I was taking daily to keep the pain bearable. Can I say with certainty that guaifenesin is helping? nope. Can I say that I'm doing better? YES! Very much.

It might just be because of the t3. A few years ago, Stanford University conducted an experiment to see if doses of t3 helped with symptoms of fibromyalgia. I can't find the results anywhere.

At any rate, I can't swear that any one part of this is working. But I am better. So I'm not seeing the splitting of the Red Sea, water coming from rocks (though you can find that on 443...). I'm not sure why it's working, but I am better. I am better.

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