Yep, that definitely happened to me. I went from being super athletic to passing out just walking down the street. So there I was, still eating enough calories for an athlete, with absolutely no activity. All of a sudden I was a balloon!
I've had problems with several of the medications I've been put on since the onset of my dysautonomia causing weight gains (one put me up 50 lbs.--ugh). In each of those instances, no matter what I tried the weight did not come off until the med was changed. I'm still about 8 lbs. up with my current dosage of fludrocortisone and that's down from 10 and I fought like crazy to lose that 2; as luck would have it, I only managed to lose it when I went through my recent bout of being uber-sick but at least it's staying off.
Aside from medication issues is the obvious issue of having much lower caloric needs now that my activity level is so much lower due to my level of disability as AireScottie pointed out. I maintain weight if I average 500-1000 calories a day, saving higher calorie days for when we go out to restaurants and being very conservative with my calories at home.
Weight changes are not uncommon in Dysautonomia. Some patients may have difficulty gaining weight because of constant nausea, while others may have difficulty loosing weight because of reduced activity levels.
Additionally, many medications have the potential to cause weight-related side effects. Are you currently taking any medication?
Wow! 500-1000 calories, huh? I tried for a couple years to lose the weight, kept a log, and found I gained weight if I ate over 1100, but my doctors never believed me. They assumed I was cheating on recording the food or I didn't know how to weigh food. Hello?!? Chemist here! I'm obsessive about recording any kind of "experiment". Anyway, since I think 1100 calories is ridiculous, I eat more, enjoy myself, and weigh too much. It's not like I'm going to suffer from high blood pressure LOL!
Yeah, I'm only 5'3" and my normal weight is 120 max (when I'm healthy), so when I'm inactive, my calorie needs are just super-low. I eat a lot of foods that have high nutrient content but low calorie density, especially high-fiber veggies and fruits, so I don't have to feel hungry. I'm a vegetarian anyway, so all my meat-substitute stuff is high-protein but lower in calories than the real deal thankfully. And I do my part to keep Splenda in business.
My sister got me hooked Hungry Girl recipes ... pretty good for keeping calories down:
I did really well losing weight on a high fiber diet for a while, but then the nerves in my stomach stopped working. Now, no grain fiber, no veggies, and very little fruit, because it just sits in my stomach and rots. That was the point at which I decided my weight just wasn't my problem any more.
Susieqdou - High fiber really does help. I lost about 40 pounds that way without feeling hungry. Fiber One cereal, those high fiber granola bars, and lots of fruit and veggies. Of course, it helped that I like food I can gnaw on. If you like refined food, it might be a little rough.
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