Unintentional Weight loss

[Timbo]

I have dropped 7-10 pounds in 2-3 weeks without even trying. I had the flu and stopped weightlifting. My appetite has decreased some since the flu. I am wondering if there is any possibility this is a POTS thing or its from losing muscle mass due to the flu and cessation of weight lifting.

[EarthMother]

I have the same question. My most recent "down cycle" with POTS began in August when I dropped 10-15 pounds in only a week or two. As with you it was unintentional. And despite efforts to put the weight back on (because I KNOW it makes my POTS worse when my weight is down) I have not been sucessful in putting on an ounce.

However, in late December I started DDAVP (an anti-diuretic) that was listed on this web site -- I take just a tiny dose like .1 once a day -- and I am now about 2-4 pounds heavier. My doc says the DDAVP is really safe and I can stay on for some time. I figure when I get back 10 pounds I'll see about tapering back off.

Thanks for asking the weight loss question, I've been wondering as well.

EM

[Timbo]

Interesting. I will let you know how things turn out. Thank you for sharing that information with me.

[DawnA]

When I was hit hard with POTS two years ago I lost 35 lbs. in 6 months. I still remain on the slim side which I think is unusual for POTS. The Drs. say that I have something going on other than the POTS, because I have CNS deficits. Maybe that is the cause of my low weight. I get a lot of comments on how good I look. Iwould rather be fat, ugly and healthy.

Dawn

[EarthMother]

So right Dawn!

People often come up and say I wish I had your disease so that *I* can loose a few pounds.

They totally don't get it.

Thanks for sharing that.

EM

[Michelle Sawicki]

I noticably lost weight when I was first sick as well. My bones jutted out and my mom later told me she was really worried about me because my "face was all sunk in". I am still thin and have been all my life. I don't put on weight...no matter how much I eat. I've heard that people with EDS can have "marfan-like features". I'm not tall, but I do wonder if this might be the reason I am thin. Who knows?

Michelle

[pamyla]

When I first got sick I gained a little weight and then for no reason just started losing. I've always been on the thin side, so it scared me a little. Since then I have continued to remain thin, and can also eat whatever I want. After the initial drop-off my weight seems stable now.

I often wondered if the adrenaline rushes somehow affected metabolism??

[Guest Julia]

I lost 25 pounds in the beginning of my illness with POTS. I lost it in only 4 weeks. It was mostly due to the fact that I had a difficult time eating. I was hyper adrengic most of the time and had some real gut problems.

The hyper adrengic problems are gone for the most part---but still struggle with slow gut motility. I am able to eat better and have gained all the weight back---plus a little more then I wanted. But I seem to feel better with a little weight on. When I lose too much weight I tend to get more symptomatic with especially the hyper adrengic stuff.

Weight loss for me is usually an indication of worsening POTS. I can't eat whatever I want or I would become huge. The slow motility with prevent that anyway. It's hard to eat more then a child's size portion of anything.

People with both POTS and EDS seem to always be on the thin side. I have met several people with both EDS and POTS---and all were quite thin.

I was always on the thin side---until my hypothyroidism kicked in. I was hanging on to a size 10, then shot down to a 6 when my POTS first hit----now i've shot up to a 12. It's harder then ever to lose weight.

But i'm counting my blessings---like I said---i'm less symptomatic with a little more weight on.

Julie

[carlacat]

If only.....I have gained weight instead of losing. I was 130 pds and now I am 162 pds. Four of those pounds are from me quiting smoking in Nov 2003 but still I feel like a blimp. I know I shouldnt be complaining but I cant wear my jeans anymore and cant afford to buy new so I wear sweats.

Oh by the way...I got rid of the dizziness. Guess what it was?? I ran out of my zoloft for two days and thats the effect it had on me. I have went before missing a day of my zoloft and it never affected me that way. I still get the little dizzys but not like it was.

Carlacat

[ethansmom]

I am currently battling with weight loss, and everyone is always saying how wonderful I look since I had the baby, how thin I am, and stuff like that- but little do they know, when I was 20 lbs heavier I felt much better!! I gained 80 lbs with my pregnancy, and in 7 months had lost it all- now, a year after childbirth, I'm down to 129 lbs, which is 5 lbs less than my pre-pregnancy weight. I wish I could just out on a little more, but I eat and eat as much as I can to no avail. I agree with the previous posts that I would rather be fat, ugly, and feel great!!

[MomtoGiuliana]

I've always been super thin (5'10", 125-130 lbs). When I first had a bout of POTS several years ago I went down to 118 and it scared me that I was losing precious weight (I was not diagnosed with POTS the first episode I had-- my doctor diagnosed anxiety). As the symptoms subsided, I returned to my normal weight. POTS came on full-blown with my pregnancy. I gained 80 lbs during my pregnancy. I was so hungry all the time, it was really awful. In the 8th month, when the POTS was its worst (during my pregnancy), I remember feeling nauseated and even vomiting from time to time, but overall I was still famished. Now I weigh 160 and the weight isn't coming off easily. But, if being heavier makes you feel better, maybe I need to try not to lose anymore weight. I'd like to weight around 150, ideally.

Katherine

[Roy]

I lost around 30 pounds within the first 5 months of my POTS starting. I was 175 and 6' 2" and my weight fell to 145 at its lowest. I gained back 15 pounds over 9 months then lost all that in 6 weeks becuse of the IBS/diarrhea the zoloft gave me. I'm off the zoloft and up to 160 now.

My doctors always tell me that I'm 20 pounds under wieght and should really do something about it. lol! If it were that simple I would have already done it. In the end I have always been on the thin side and it looks like things won't be changing.

[justin]

haha aaahhhhh yes......well, i've probably mentioned this before. i am 6 feet 5 inches tall, and have always been at least 30 pounds underweight for my frame and height. i am pure ectomorph, my metabolism is super fast, and there is simply nothing that i can do about it, in spite of the thousands of taunts and jokes i've endured in my life. my 'normal' weight was 175 pounds. once i got up to 182 (an all time high i hit for a few months soon after high school) and once down to 164 (again, for a few months) but for years i was solid around 175.

when my POTS first got really bad, i dropped an additional 30 pounds in 1 month (a pound a day) until i was hospitalized. then i gained a bit back. a couple of weeks after i was discharged, i lost the weight i had gained back and ended up somewhere in the 140's. that's where i bottomed out. it was a freakishly bad time in my life with eating, body weight, and gut problems, and i was no newcomer to those kind of problems.

i'm now back to 165. in fact, i've been there since the summer of 2003. i can't put any more back on, i can't even hit my usual weight of 175, which is very frustrating and fatiguing. if i eat 'normally' (whatever that is) i stay the same, if i don't eat enough, i stay the same.

i get very upset when people complain to me being slightly overweight (present company excluded, of course) because being underweight can be extremely debilitating, and can come with all sorts of mental baggage, ED's, and other stuff. it's such a fine line, and once you cross it, it's so hard to continue to care for yourself.

but still, i guess i am thankful cause some people have it much worse with feeding tubes et. al on a regular basis. and kudos to those of you who deal with that. you are troopers.

anyway, that's my rant.

justin