Unexplained Weight Loss?

[kbdy]

Has anyone here experienced unintentional weight loss with dysautonomia? I'm being treated at Cleveland Clinic and they have tested me up & down, backward & forward with nothing to show for a 30lb weight loss in 8 months.

My dr is considering that I'm having adrenaline surges, but I haven't noticed anything different besides the usual stuff.

I'm concerned that they're missing something as my weight continues to decline. Or is it just one of the lovely dysautomia symptoms causing this?

[gjensen]

I lost a lot of weight leading into this, but it has seamed to have become more stable now. I did lose a very similar amount of weight in a very similar time frame. I did have digestion and swallowing issues though.

If you have had no change in digestion and eating habits, I would wonder to. It seams that you would feel the adrenalin surges.

[Dustbunni]

I've struggled to maintain my weight every time I have pushed myself too hard or become ill and caused the dysautonomia to go especially crazy. Sometimes the weight loss is obviously from my eating less due to nausea (though we try to offset it with Boost drinks). However, there have been occasions where the nausea was not severe enough to change my eating habits and I still lost weight rapidly - about 10-20 lbs a month. Considering I would be confined to bed and completely sedentary during these times, that was significant for me.

My metabolic tests have never hinted at a cause. Personally though everything is physically more difficult when I'm doing poorly. Like break in a sweat, trembling muscles difficult. I think in my case I'm just burning through the calories faster as my cells try to produce enough energy to function (due to a probable mitochondrial disorder). Though if a person with only dysautonomia was attempting to be upright a lot, I imagine that could physically be equivalent to a work out. Even now that I'm doing better, I am still not maintaining my weight. However, I'm losing it at a much slower pace right now. My physical activity level is slowly increasing which accounts for some of the weight loss, but because of this I've also been trying to increase my caloric intake as well. I figure I've got about 10 more pounds to spare before I need to really worry or whip out some chocolate cupcakes. (Hehe. Kidding about the empty-calorie cupcakes. High value food for the soul though. )

[Chaos]

Whenever I have a major flare or relapse of symptoms I have weight loss that accompanies it. Have lost as much as 17-20 lbs but not as much as 30. Usually I lose my appetite and have early satiety so I can't eat much more than a few bites so that probably accounts for it in my case...along with the nausea and the "revved up" metabolism that comes with the tachy etc.