Allene Posted January 21, 2012 Report Share Posted January 21, 2012 I was curious about how weight could effect the symptoms of everything that falls under the dysautonomia umbrella, but particularly POTS (which I think is the subset I have).I've noticed that if I lose weight, my symptoms get worse, and if I gain weight they get better. I can't tell if that's just coincidence or what.I've always been somewhat heavy, though I don't look as heavy as I am. I've been told by more than one health professional that my muscle content is roughly 40% higher than that of an average woman my height, leading me to weigh considerably more without necessarily being fat. At 13 I weighed about 170lb. I was in really good shape, and my size was comparable to my much lighter classmates. It was at 13 when I started first experiencing fainting and fatigue and such. I was really active until I hit high school, and then schoolwork got in the way of exercise and I started gaining weight. I slowly but steadily gained until I was about 210lb, and I didn't seem to have any problems with dysautonomia, save for a brief period when I was 18 when I managed to lose some. I stepped on the scale at 210, and was horrified. I modified my diet and started getting a little more active. In the winter of 2010-2011 I lost about 40 lb, and in January of last year I was at 170lb again. Unfortunately, through the weightloss process, my faintness and fatigue and everything slowly crept up on me until the point where I was using a wheelchair to go places outside of the house. For whatever reason, I was unable to maintain my weight, and over the past year I've gained 60lb. I have seen incredible improvements with my dysautonomia. I'm rather upset with my weight at the moment, but now that I've seen how my weight seems tied in with my symptoms, I can't seem to motivate myself to try to lose any again.Has anyone else experienced anything like this? Quote Link to comment Share on other sites More sharing options...
lillybits Posted January 21, 2012 Report Share Posted January 21, 2012 i am backwards the more i eat the worse i feel. Its crazy how dofferent the same disease can effect people so differently! Quote Link to comment Share on other sites More sharing options...
yogini Posted January 21, 2012 Report Share Posted January 21, 2012 You may be retaining more water if you weigh more. The general thought for POTS is that bing very overweight or underweight is to good, but a few pounds does not affect most people. Quote Link to comment Share on other sites More sharing options...
bunny Posted January 21, 2012 Report Share Posted January 21, 2012 Weight definitely makes a difference for me, although I'm the opposite of Allene. 125-140 lbs seems to be the sweet spot for my body. Below or above that and the symptoms really start to dominate my life. Losing weight doesn't seem to cause anywhere near the problems that gaining does for me. Even that weight range plants me firmly in the underweight category for my height (6'2"), it's where I feel my best and my body seems happiest. Quote Link to comment Share on other sites More sharing options...
Lemons2lemonade Posted January 21, 2012 Report Share Posted January 21, 2012 I have noticed some association with this. But i think it is the pots making the weight and not the weight making the pots. Within the month before my first "attack" i gained 15 lbs. Don't know if it was water weight or what. Quote Link to comment Share on other sites More sharing options...
Kirsti Posted January 22, 2012 Report Share Posted January 22, 2012 I am underweight, and I do feel so much better when I weigh more. Quote Link to comment Share on other sites More sharing options...
rubytuesday Posted January 22, 2012 Report Share Posted January 22, 2012 I am underweight and feel better when I weigh more (but still have syncope) but if I gain more than what my 'typical weight' had been, I start to feel struggles with that--as if body is working harder lugging around excess baggage it is not accustomed to--and the fluid retention gets worse. Quote Link to comment Share on other sites More sharing options...
Katybug Posted January 23, 2012 Report Share Posted January 23, 2012 I don't feel like my symptoms are a result of my weight fluctuation, but, I feel like my weight fluctuation is a result of my POTS. I loose weight remarkably fast when my GI symptoms flare up and I also gain it very fast once they settle. I am struggling to now to halt my weight gain because I am in a flare with many symptoms but not my GI symptoms, and as I have posted before my appetite gets weird and I can't feel full. When I add that into the lower activity level from my flare...it's bad news for my waistline. Quote Link to comment Share on other sites More sharing options...
julieph85 Posted January 23, 2012 Report Share Posted January 23, 2012 I find that when I'm in a flare I gain weight and it is extremely difficult to lose weight. I believe it is cause my metabolism shuts down Quote Link to comment Share on other sites More sharing options...
Frugalmama Posted January 23, 2012 Report Share Posted January 23, 2012 I don't feel like my symptoms are a result of my weight fluctuation, but, I feel like my weight fluctuation is a result of my POTS. I loose weight remarkably fast when my GI symptoms flare up and I also gain it very fast once they settle. I am struggling to now to halt my weight gain because I am in a flare with many symptoms but not my GI symptoms, and as I have posted before my appetite gets weird and I can't feel full. When I add that into the lower activity level from my flare...it's bad news for my waistline.I am the same way as you, Katybug . I can easily lose 3 pounds in one day if I'm having a bad GI day, but as soon as my stomach gets under control, I put on weight really fast and I'm always starving,That being said, I don't notice a difference on my symptoms as my weight changes. I am 5'9", and until I got married, my weight was about 120 pounds - and was extremly symptomatic. I had three pregnancies in three and a half years, and gained and lost 40 pounds each time, and didn't see a change at all in my symptoms. Quote Link to comment Share on other sites More sharing options...
anaphylaxing Posted January 23, 2012 Report Share Posted January 23, 2012 My symptoms started after I lost 10 lbs. Wasn't trying to lose it though so loss might've been related Quote Link to comment Share on other sites More sharing options...
sandymbme Posted January 24, 2012 Report Share Posted January 24, 2012 I gained about 30 pounds or so when I first got sick, and then last year my weight plummeted, for no reason we could easily tell. After a lot of false negatives and dead ends, I finally ended up with a diagnosis of celiac disease. My weight stabilized for a minute, and I got back up to about 140, (I am 5'8, so at 140 I am still pretty slender.) but my symptoms have gone completely haywire, and my POTS, EDS type III, celiac disease, and osteoporosis are all exacerbating each other to a horrible degree. I have lost even more weight, am now down to 124, which is less than I weighed my senior year of high school almost 20 years ago. I got constant grief back then from friends and family that I was far too thin back then, at 128 or so. My fiance has been horrified at the disappearance of my rear end, and is strongly suggesting I need more milkshakes and such in my life. Like several of you, though, my weight fluctuations seem to be a result of my assorted dx'es, rather than triggering the flare.Sandy Quote Link to comment Share on other sites More sharing options...
Darlene Posted January 25, 2012 Report Share Posted January 25, 2012 i feel better when i am heavier. when i was 155 my bp was low, now that i ve gained 40 lbs my bp is normal. Quote Link to comment Share on other sites More sharing options...
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