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POTS and your weight


Guest Mary from OH

Weight issues  

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When I got diagnosis end with CFS/ME 3 yrs ago I struggled to loose/maintain my weight over the course of 2 yrs I went from 125 range to 159 lbs (I am 5'4) it didn't matter what or how I ate I could not loose weight, then last Dec 2011 I go sick and it caused a huge POTS flare which led to my diagnosis (I suspect I had POTs for a few years as i had many components prior just not as bad as now) I knew I needed/ wanted to loose weight so I joined weight watchers (I had tried a year before with no success) and this year I have gone from 159 to 117(current) however for the last six months I have not followed the plan and have not made the best food choices. But I was loosing weight to a point it was scaring me as I was no longer trying to loose weight but maintain at 120-125 (i hit 113 and was getting a lot of questions by coworkers/family on my health at that weight as you could see every rib and hip bones), so I do eat sweets not excessively but a lot more then when I was actively trying to loose weight and sticking to the plan. I have always had a fast metabolize and prior to CFS I was able to maintain my weight fairly easily..so it seems to me that POTS almost kicked my metabolize into overdrive, but I guess if you think about it with standing heart rates in the 180's my body is essentially running a marathon at all times...now I just with I could get some muscle mass as all of mine is gone from not being able to really exercise....

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With the onset of POTS I lost 10 lbs. in two weeks. I was constantly hungry and eating more than usual, and still loosing weight. I also developed anemia.

I've gained 14 lbs since then, due to Florinef and not enough activity (I'm working on that).

I noticed that I loose 3-4 lb. when I have several bad days in a row. Now I'm at 122lbs. I'm 5'4". Ideally, I would like to be at my pre-POTS weight, at 118lbs.

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I once read a symptom of pots was being 'easily satiated'.

That's how I eat. I'm hungry but after a few bites I'm full. So was thin when I was dx with pots and have continued to be. I don't have a big appetite. So didn't loose weight but haven't gained any.

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For me it depends on the year. I'm 5'10 and have always been around 170lbs (except when I got to college and gained some weight pre-dysautonomia. When my symptoms spiked in college I went from 180 to 145 in like 2 months. Then a year later I had massive weight gain (145 to 232 in like 6 months). Now, I'm seeing a weight loss trend again. Last month I was 230, now I'm 210. Idk if it will continue yet, but we'll see. I don't need the extra weight (i never had it before anyway), so I'm not too worried but i'm def keeping tabs on it. I seem to either gain or loose drastically when symptoms worsen. I haven't noticed too much change in between bursts when my symptoms are more manageable.

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I have gained alot of weight latly because of my lack of activity and the fact that I feel hypoglycemic all the time. Or at least every 30 minutes, so it seems I'm always eating now. Does anyone else have this?

Hey Toddm,

I have gained weight too. When I have a flare up I feel extremely hungry and can not get full no matter how much I eat. My family says this is a sign that they notice just before I get really sick. Do you have the same kind of feeling? I don't understand it at all.

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Random meds reaction, incidentally: a lot of people report increased appetite/weight gain on amitriptyline, along with finding that it helps them sleep. I found I lost my appetite and got insomnia on it. It was useful, as it kick-started my weight loss programme (I was one of the ones who'd put on weight and needed to lose it), though it would have been handy if I'd been able to tolerate the med and use it for pain relief. Has anyone else had odd reactions like that?

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