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Is Weight an Issue?


JaneEyre9
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I don't know...I grew up a ballet dancer so I was always underweight according to my doctors. I went full blown pots and got diagnosed when I had moved out and GAINED weight. Personally I don't think weight plays a big issue...I am back to what some say is to thin and others think perfect ( I am a size 2-4 5'9 and 124 pds). I find that if I stay at a thinner weight I feel better not as bad with heart palpatations, but always freezing and shaky.

Just my 2 cents!

Ciao :)

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I am told that sometimes some people who where very painfully thin could gain some partial improvements in symptoms if they gain weight. I am now overweight but not by much. probably 10 pounds. Thick waist (size 12-at 5ft. 4in,---size 8 everywhere else. Jeans that fit my waist are always too big everywhere else. However, I was always thin, and seem to feel better with more weight on my body.

I weighed 145---for me a size 10 (age 41) which was my heaviest before POTS----this was just before my health I crashed really bad in 2000. I went down to 122 pounds in two months. I felt my worst. It's hard to say because before I hit my 40s I was thinner and at one point only weighd 116 pds and I was fine then---just very very mild symptoms. My disposition was always thin----but I think some people with POTS if they are on a fairly normal diet, and are able to eat will present with the same weight gain challenges that most normal people get when they age. What isn't fair is that a lot of us have low exercise tolerance, and it's a lot more difficult to lose the weight.

Since being diagnosed with the POTS and being put on medications---(wellbutrin/propranolol-the beta blocker being the main culprets) I gained my weight back---plus 10 more pounds---- :) . I was simply able to eat again. I didn't change my diet at all---just ate smaller meals because it is still difficult to eat a "normal" meal. My health has now taken a turn for the worse almost the same as it was when I weighd 122. However, I have noticed my jeans getting loose----I think the decline in my health has killed my appetite some. I'm still wearing size 12---but they are very loose, so it's not drastic. It's more or less that I feel so lousy---I don't eat as much.

A lot of people with POTs are painfully thin. Sometimes the condition can come from being overly thin----not enough nutrients...................

I have also seen POTS patients who were quite overweight, but most are thin to normal weight---and some struggle with a few extra pounds as they get a little older. The meds can stabilize them and they often are able to eat and digest food better---thus the weight gain. A lot of their other symptoms still exist, however.

Julie :0)

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People who are underweight tend to have lower blood volume. I think that's why many of us feel better with a few extra pounds and many people actually feel better while pregnant. I used to be thin and my family has told me that I looked way too thin right before I got POTS. Now I'm just like Julie. I would love to lose 5-10 lbs, my arms and legs are skinny and all the weight is around my stomach. My weight gain is caused by beta blockers, salt and not being able to exercise like I used to. :)

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When I first got sick I was overweight. But with the stomach problems I lost a ton of weight in 1 month...a dangerous amount really. Since my 3 surgeries and then an ssri causing me to lose 3 more pants sizes in one month...I have now lost over a hundred pounds. I feel that I am now tooo thin. I have since tried gaining the weight back, but unsuccessfully. The doctors are concerned that I do not lose any more weight. So far I am maintaining it with no luck gaining. Not sure how much of this is related to my pots or my other health problems. Some I think relates to not being able to eat the foods I used to...I eat much healthier now. Some I think relates to my stomach problems. Some I think relates to POTS...eating small meals, at times too nauseated to eat etc. I am a size 4 now and have had to put up with alot of unnecessary remarks as to how thin I am, as if I chose this. Yes it is nice to not be overweight anymore. But the rapid weight loss has been scary. And I don't want to be underweight either. Also I have had to replace my wardrobe over and over again. Thankfully my daughters also had some clothes for me that no longer fit them.

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I was very thin my whole life, then at 30, was put on meds that in two months made me heavier than I was full term with either pregnancy! But they insisted it wasn't the meds. Well I weighed 97 pounds starting them and 2 months later 145, so you tell me.

I have been symptomatic either way. A year and a half ago, during a bad spell, I lost about 50 pounds. Went from 160 to 110 in about 3 months. Now I am 5' 100 or so pounds and size 4-6. Feel like total crap, so truly don't believe weight really matters. morgan

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I was substantially overweight when I first developed POTS (although was not diagnosed at this point). As I have posted elsewhere, I lost a lot of weight last year, although not to the point of being thin but rather within a healthy range for my height. I felt a whole lot worse when I lost the weight! Here I was, thinking I was doing something good for my body, and my body rebelled!

I'm now on florinef and the dizzy spells and syncope have been absent for the month I have been on it (yipee!) But I still have other POTS related symptoms.

India

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i have always been over weight and i can say that as i have lost weight i have had more trouble not less.

go figure. pun intended. i am slowly losing weight now and have been battling symptoms that just won't seem to lighten up. my docs are happy at the wieght loss, but not happy at the symptoms. working my way thru both is a challenge that i would rather live without, but i am doing my best with a goal of 4-6 pounds lost a month. it has been really hard with my new back troubles and going back on steriod inhalers, but at least i'm not gaining.

i have a series of stretches that are vital to control both the pain and keeping the weight under control as well as light weights and now pelvic floor excerises to start retraining by bladder and give me better control of my bowels. each person really needs to find the place where they function the best and not be too extreme in either being under or overweight

best of luck to us all,

blackwolf

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Hi... well as achild I was always very very thin..and I had pots sysmptoms then too.. well when i turned 11-12 yrs old my pots got much much worse (we did not have a diagnosis yet) and I started to put weight on.. not enough.. but enough for my family to notice that I was getting "chunky".. right around this time I also started menstruating.. and like went haywire then !!

Then when I was about 16-17....I gained weight... then again this past 6 months I have gained 23 pounds.. which is not cool!!..

go figure i cant keep food down or in for that matter.. and I gain weight!! how freakin crazy is that!

So I have to say frob being on both ends of the weight spectrum.. and rught in the middle.. that my potswas stiil there to its severity no matter what my weight was..(sidenote.. being a heavy gir does have some effect on things I thinl too)

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I have always been very thin my whole life anywhere from 95 - 100 lbs....

I am at my highest weight now at 5'5 and 109lbs..... I do feel better with the extra weight on, I also contribute it to working out and a lot of muscle development since I am still a size 1 -2 in jeans.....

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That doctor is full of blank. There is no such correlation reported in the literature that I've read. While doctors have reported that this is a "thin white female" disorder as an "annectdote", there is no empirical evidence that I've ever seen to back that up.

The only thing I've seen that was even close was an awful article in a women's magazine...Mademoiselle? Ladies Home Journal?? I don't recall, but the article was really terrible as the author clearly had not done her research. I was on the magazine's forum and there was a huge outpouring of complaints about the lack of factual back up for the article. The magazine's editors never replied.

As and aside, I've never been thin. I've always been a healthy weight, and sometimes with a few pounds extra. The most I ever weighed was in the 140's and the least was 111. Keep in mind, I'm only about 5ft tall, so that's healthy weight range, with the top one about 10 lbs more than on many doctor charts.

At the NDRF conference a few years back, there were many people in attendance. Yes, more females for sure, but not overly thin. There appeared to be a normal range in body size and type, just like the general population.

Nina

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I want to clarify my comments from earlier--yes, thinner folks my have lower bp--however, that doesn't necessarily equal full blown dysautonomia.

Steph, I agree, observers can't always be objective--that's was my point in saying that "thin white female" disease reported by doctors isn't necessarily factual or objective (annectdote just means a side note or observational report).

Nina

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Wow! What a loaded question! I've found that this seems to be a very touchy subject here, and rightfully so for everyone. For those who can't lose, it's frustrating. For those who can't gain, it's frustrating. I read something on a website written by a doctor who suffers from dysautonomia, and he explained, as many people here have, that dysautonomia is a myriad of symptoms and conditions. Everyone is different, although many of us share a lot of the same.

As far as weight goes for me, I am 36, have had 4 children, am 5'6", and a size 0. I keep losing because of the IBS symptoms, I guess? Who knows?

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Just wanted to add that it's possible the weight loss that occurs with POTS could contribute to the perception of this illness affecting thin women. Many of us weren't thin until we got POTS. I know I wasn't.

Amy

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Hi Everyone;

I have read every response to this topic, so I felt I had to add my 2 cents. I don't know if you are only speaking of POTS or Dysautonomia in general. I have Inappropriate Sinus Tachycardia. I can NOT stand for more that 20 minutes. So needless to say, standing in line is out of the question for me as well as being on my feet for long periods of time. My cardiologist told me that IST with vasovagal depressor syndrome (which I also have) does cause postural othostatic intolerance.

The reason I am responding here is because I AM overweight. I am 5' 2" and weigh 185 lbs. I eat right, 3 - 4 very small healthy meals per day. I exercise and get plenty of sleep. I just can't lose the weight. I have tried everything. I drink lots of water because I do have low blood volume. I have researched dysautonomia extensively and have not read anything about weight being an issue with dysautonomia. I have consulted with both my Internist and Cardiologist about my weight being a factor. Both have told me that my weight does not have anything to do with my syndrome, bad or good. I have had all tests done to check for thyroid dysfunction, adrenal dysfunction and had all of my reproductive hormone levels straightened out. Since my dysautonomia crash, last December till now I haven't lost nor gained a pound. I have always been a very solid person, but with a very low blood volume. But the more balanced my hormones and the more I exercise the better I feel and the less my symptoms.

I hope this sheds some light on attributing weight to dysautonomia or POTS. This is one great example to prove that we are all different and Dysautonomia effects each of us differently. Take care!

KathyP :)

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hi all,

just thought i'd add my thoughts, i've always been verging on overweight, apart from when i was a teen. my blood pressure has always been low, which the docs always thought was odd cos i'm quite big (5"9 and not sure how much i weigh, about 15 stone) however this is the heaviest i've ever been, i can't seem to lose weight and i eat really healthily but i put on about three stone when i started taking florinef.

becks x x x

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I gained liked 20 lbs. in a year after getting sick (but i grew 4 inches.). everyone tells me my weight is perfect... i weigh 150 lbs. , and am a little over 5'9". i wear a size 10 in misses, 9/11 in juniors. i actually perfer the way i look now than when i did a couple of years ago... i look like the 16 year old female that i am! however i must say that my health has declined significantly over the past year. when i saw dr. grubb a little over a year ago, i was able to go to ceder point (with my sit and walk.), now i can't get around without a wheelchair, and a lot of the time i require O2. so no... i cannot say that gaining weight helps to lessen pots symptoms.

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Just adding my stats, 5"11, 135 lbs, size 6-7. I tend to lose weight easily and have trouble gaining. Think I may go back to protein shakes. The weight does not bother me by looking at it, though I suspect I might feel a bit better with a little more weight. I do carry the pouch around the middle(left over from 3 kids).

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Hey everyone,

Thanks for all of your thoughtful replies. I know this is a sensitive issue for most women. I've had my own weight issues, myself. It's comforting to know that staying at a healthy weight is my best bet. I think that getting sick causes many lifestyle changes (meds, lack of exercise, stomach problems) that can really affect weight. It's interesting that these things have affected all of us differently. Thanks again for taking the time to add your personal experience.

Kristen

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