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Weight change due to dysautonomia  

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Just out of curiosity. I keep reading how some people have lost weight, but some have gained and I wanted to get a better grasp on the numbers.

As for me, I gained weight. About 20 lb so far, but I'm working hard to lose it. Mostly by eating right (I've lost 5 lb in the last two weeks :D), since I have severe exercise intolerance.

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My son had a physcial yesterday and his pediatrician is quite concerned about his weight. Two years ago he was in the 50 percentile for his weight for his age. Now he is 97%. We have him scheduled for PT at the Mayo for teens with POTS in October. Hopefully this will get him moving more and able to lose weight.

Christy

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I voted that my weight has stayed the same, which it did, but last year I purposely lost 30 lbs. I find it odd that since POTS hit, and I've been forced to sit down for 98% of my day, I did NOT gain weight. And then, when I changed what I was eating(more Atkins-like) to lose weight, I lost all 30 lbs. in 5 months with NO exercise. You'd think with no activity it would be hard to lose.

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I voted gained weight, but given that I've likely had pots for 15 years now (since I was 16) it makes it a bit tough to answer.

First off I probably gained 30-40 pounds when I started university, which happens to be when I had a really bad time with pots. I couldn't blame it all on that though as eating cafeteria food all the time and stopping all the sports I played in high school didn't help either. Then I grew up, got married, had two kids and packed on a bit more weight. So I would say some of it is pots related as I can't exercise like I used to and have no energy, and the rest would just be lifestyle. Even still I have never managed to lose weight even when I've had times where I've felt better.

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I wasn't sure if I should have voted "lost weight" or "stayed the same" because I really didn't lose that much weight. I started out a little thin, 5' 8" and about 118-120. Now I'm in the 114-118 range. My doctor is concerned and wants me to weigh 125 or so, but I feel healthy at this weight. I know I also have a past eating disorder that is probably rearing it's ugly head with this, too.

Do any of the rest of you count your calories/fat? I eat quite a bit more than what the nutritionist says I should, about 1650 cals a day, and I do light to moderate work-outs 3-4 times a week. Treadmill and abdominal work when I'm up to it. The rest of the time I'm usually on my rear end, so I have no idea why I don't weigh quite a bit more!

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I've been attempting to count calories for the last few weeks, ever since my doctor suggested it. It can be hard though, because my best friend and I love making cupcakes. We make cupcakes about once a week and then I'm stuck with leftover cupcakes that I can't help but eat! This past week has been a little easier though because I've decided to cut out wheat and dairy, so no cupcakes for me haha! I've been trying to get anywhere from 1200 to 1500 calories a day, since I'm rather sedentary and my metabolism is a bit slow. Sometimes I go over, but I've lost some weight already so that's a great motivator. I don't "count" fat, but I try not to get a lot of it, since it can be a trigger for IBS (I've noticed it particularly being worse after a fatty meal. IBS is also the reason I've cut out dairy and wheat). I don't work out at all, though I used to before my symptoms got too bad for me to exercise anymore. I used to go thirty minutes on the treadmill every day, but I had to quit because I kept feeling faint and dizzy and I fell off the treadmill once. I also used to do karate, but I'd have a near-fainting episode every time I'd go to class and I'd have to sit the rest out after that. I can't afford to pay for classes that I can only attend half of. And now I can't afford it period.

But anyway, yes, I count calories in an attempt to lose the weight I've gained since becoming so sedentary due to my symptoms being so bad.

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I've lost about 12lbs so far. Most of it happened in the 1st 2 months of being sick. Since then, my weight has been pretty stable. Even though I feel nauseous a lot, I force myself to eat throughout the day. I try to count calories to make sure I'm eating enough. I don't want to start losing a ton of weight because it makes me feel too weak. I'm average sized for my height so I'm in no danger of being too skinny. potsgirl...I struggled with eating disorders in the past too. I've been trying very hard to keep that from becoming an issue again as well. Especially now that I have a 3 year old daughter. I don't want to ever pass on that kind of mentality to her.

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In the year since my full blown POTS symptoms arose I dropped 1.5stone, my weight always fluctuated before but now I find that if i have a few busy days when I don't eat as regularly or as well as usual I drop weight pretty quickly. I had some weight to lose before it all began, dropped from 9.5 to 8stone but its more of a struggle to keep it on these days and dropping below this makes me look ill!

Never thought id see a day where i would be filling up on the junk to keep weight on!! Its defo something to do with POTS, im thinking possibly my body is burning more energy to keep BP and HR stabilised all the time than before??

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I've definitely gained a fair amount of weight since this started, about 25 pounds, but considering the loss of muscle mass (I used to be fairly strong, now I'm a noodle), it's more likely about 40 pounds of fat gained, and 15 pounds of muscle lost.

After about a year, when it started to seriously impact my life, I started to make eating healthy food a priority, and I've managed to keep that up - but the problem is, as I got worse and more sedentary, not only did I burn less calories, but I started eating a lot more. (I don't have the stomach problems many of you suffer for, so no loss of appetite.)

Partly because eating helps keep my energy up so I can get things done, and partly because when I'm sitting around my apartment all day, I get bored. So I eat. It's a bad habit I've always had, but when I was healthy I was able to do things to distract me.

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i used to be very thin 1.67 length and 100 pounds. my doctors never worried. i could eat everything witout gaining weight. after i quite smoking (21 years ago) i gained 6 pounds, the weight gain after having my sons was lost after delivering them within a week. when i started meno pause (in my early 30's) i started to gain weight. right now i'm 122 pounds but def can't eat everything anymore. which is a pity :lol:

allene, if i were you i'd make loads of cupcakes and try sell them, that would stop you from eating them and would bring some money in the pot :)

corina :)

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I went from a uk size 8 to uk size 14/16 for no reason at all. 2 and a half stone in weight went on for no reason at all. This was 2 1/2 years ago. The past couple of months I have lost nearly 3/4 stone for no reason too.

Is this down to autonomic dysfunction then??

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I loose weight very easily. Doesnt help that my entire family is very thin, so the genetics are there. Problem is that I eat one meal a day. Its a pretty decent sized one but I dont really eat until after six pm.

I think it has to do with the fact that it makes my symptoms worse, and I feel good enough at night to eat.

Of course I snack all night too.

When I was at my lowest I was down to 106 pounds and im 5"10. I dont want to ever get that small again. I looked like a skeleton.

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I voted that my weight has stayed the same. I'm about 25 lbs lighter than I was a year ago, but I really started trying to lose weight early last fall through diet and exercise and my symptoms didn't really hit me hard until March of this year. I noticed it was easier to lose weight after that because I feel nauseous about half the time! But I don't think the POTS & NCS have been a significant contributor to my weight loss. I'm just a hair under 5'7" and I currently weigh 129 lbs.

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I always seem to end up at the same weight. When I had had some severe symptoms or GI issues I have lost up maybe 10 pounds but once things settle down I always end up at the same weight which makes my BMI about 24. What I dislike is the dr never says much about my weight because it is in normal range but I know I have a higher % of body fat then my overweight friends becasue I have lost muscle for sure over the years. I might be the same weight as I was 10 years ago but I have noticable atrophy in my legs.

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My weight has been pretty constant for the past 15 years, during which my chronic fatigue has gotten worse and worse. After the onset of my neurally mediated hypotension, I've lost about 10-12 pounds over the course of about a year. That's odd for me - I have to watch what I eat in order to not gain weight. I don't have serious GI issues, but really don't feel well if I eat a big heavy meal or a lot of sweets. However, I wonder how much of this recent weight loss is just due to depression: I go through periods where I don't think I'll ever get any better and I get very depressed and don't eat much.

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  • 1 month later...

I voted lost weight. I have lost 25 pounds since the onset of the illness. I used to be 126 and I am now 101. Very concerned...hopefully I do not loose any more. Doctors say I am already underweight for a 18 year old , and that if I loose anymore my body will start eating my muscls :( I have been accused of being anorexic be serveral people :/ that makes me very frustrated. I am not sure why I am loosing this weight. It is very scary!

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Dani--I can so relate as I am also 5'10". I weighed around 116-122 through college and up to about age 27 when I started to put on a bit more weight and got up to 130. I just could not gain weight. I didn't really have POTS then (if I did it was mild) so not sure there is a direct relationship.

I gained tons of weight with pregnancy (about 70 lbs) and it took while to lose. I am now back down to under 140 lbs--which is a little less than I would like.

I am able to exercise--and I don't often have a large appetite.

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I gained about 35 pounds (I went from 125 to 160, I am 5'8 so it wasn't too horribly overweight for me, but I was very much less than thrilled!) when I first got sick. Then, between October of last year and January of this year, I lost all that and more. I was diagnosed with Celiac Disease in March, and gained 15 pound back after cutting out gluten, putting me at a fairly healthy 140. Have hit a bad patch lately after dining at a restaurant that cross-contaminated my food, even after spending 3 days in the hospital I can seem to stabilize.

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Since being diagnosed with POTS last September, I've lost about 15 pounds. In addition to POTS, I also have gastroparesis which often leaves me without an appetite. Combine that with tachycardia, I guess that's why I've lost so much weight.

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  • 2 weeks later...
  • 2 weeks later...

I have gained a stone since being diagnosed in April, but to be honest its down to lazy eating and reduced exercise since im so tired all the time!!!

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  • 4 weeks later...

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