Being thin and having POTS symptoms

[MomtoGiuliana]

I started this in response to the Good Morning Everyone topic line--on diet, but it was getting a bit off topic, so I moved it to a new topic!

It's interesting how many of us are or were very thin--as well as taller than average! Maybe another poll ?!

Perhaps I beat you all--in my early 20's I was 123 lbs and almost 5'11"--I know, frightening. I didn't feel unwell though I did have some very minor POTS symptoms. People sometimes thought I was ill and/or anorexic and I certainly hated being that thin. (I love how many people have no problem making comments like "you are too thin!"--but would never say to an obese person "you are too fat!") I was always trying new schemes to put on weight, nothing of which worked!

Now at age 35 I weigh in at around 150--much better. But, I have noticed no clear connection between weight and POTS symptoms, in my case.

[pamyla]

I'm also fairly skinny, in fact I've lost weight since first having pots problems. I eat all the time, but it doesn't seem to matter. (hey not complaining about that part as I do like to eat!) But sometimes I will lose a few pounds for no reason at all and I don't like that too much..... I was recently at a new doctor's office and he told me that he has many "small" patients like me so I guess it is common.

And yes I agree with you, people have no problem saying 'you are too skinny, you need to gain weight'. They don't realize that those comments aren't always great to hear.

[MightyMouse]

Okay, you have me by a full foot! I'm only 4'11"...shrunk 3/4 in the past few years as I was nearly 5' before. I'd never been heavy, but over the past two years, I put on 30 lbs. I think it's age creeping up on me and my lower level of physical activity... hmmm...

Nina

[Guest Julia59]

I've alway's been on the thin side---but I am only 5ft. four inches. However I have also gained about 30 to 35 pound's back after my rapid weight loss in 2000. I was at around 145 when I got sick with POTS which was the most I ever weighed. When I got married the second time I only weighed 115 pounds---very thin for my larger frame. I felt well then despite being so thin. I've have had problems on and off most of my life---however they were milder in nature---except for a bad spell in 1982---and 1990 that were short lived. In 1982 I only weighed 110 because I had burned my esophagus with very hot food and lost a lot of weight on a soft food diet. I had to remain on that diet as long as my swallowing was difficult. This was the first significant POTS type symptoms, but was diagnosed back then with MVP. AS I gained back weight to around 122 pounds my symptoms got much better. In 2000 my symptoms increased with a vengence at the weight on 145, and i quickly shot down to around 120 pounds.

Now i'm up to around 150 which is an all time high for me. My Cardio doc in 1982 said I would do better with a little weight on---symptomatic wise. And I did do better when I gained a little weight BACK THEN. I have no idea why I got so bad in 2000 at a fairly normal weight for my bone structure. The only thing I can think of is that I was recovering from a bad virus, exposed to a lot of environmental/industrial toxins, and was under a great deal of stress with a management position with a bunch of cackeling back stabbing hen's working for me.

In 1990 I was at a normal weight---about 125, but I fell quite ill and symptoms were more involved then in 1982---but not as bad as 2000. In 1990 it was the beginning of exposure to toxic chemical's. When the chemicals were ordered to another facility, my symptoms improved again until the chemicals were back in the picture in 2000 at the same employer. It seems my weight had nothing to do with my symptoms at that time.

I do feel a bit stronger with weight on---but I am trying to slim down very carefully as I know sometime's some of us get much worse with a "RAPID" weight loss. I'm no longer employed with THAT employer. My symptoms improved after I left the company and in addition my weight came back on. However, my symptoms never went away as much as they did in 1982 and in 1990.

I think the KEY phrase is a RAPID weight loss. I do notice a big percentage of POTS patients are very thin. But I have seen some that were over weight too. But the majority tend to be thin, or had a thin disposition most of their life.

Julie :0)

[Roy]

I have alwasy been somwhat under weight for my heigth. 6'2" and 185. My weight has fluctuated from 145-165 ever since I have had POTS. I am now at 155 and trying to gain, but it is difficult. My doctors have told me that I need to gain weight my entire life.

I agree having to hear 'you are too skinny, you need to gain weight' isn't always the best thing to have to put up with.

[Michelle Sawicki]

I've wondered if there could be a possible connection too. I know people with Marfan's Syndrome are usually thin, and that is a connective tissue disorder, as is EDS. I've wondered if the POTS patients with EDS might tend to be thin. I'm 5'3" & usually weigh between 98-102. And boy, can I ever relate to the "mean skinny comments". When I was in Junior High school my gym teacher spent a whole class talking about anorexia, or more specifically I should say she spent a whole class talking about anorexia to me. She just kept staring at me. I wanted to melt into the floor and disappear. I've heard a ton of nasty comments about my being thin. One time we were eating at my husband's aunts house and I caught her listening outside the door while I was in the bathroom. She wanted to hear if I was throwing up, she explained. I couldn't ever even imagine making comments to someone because they were overweight. Some days just leave me shaking my head....

Michelle

[Guest Julia59]

Regarding anorexia comments. This happened when I had lost 25 pounds in 4 weeks at the beginning of the worst phase of my POTS.

A woman who I thought was a close friend was telling people at work that I might have an eating disorder. Then she cornered me one day when I first walked in one morning and asked me if I was throwing up my food.

I told her throwing up my food was the farthest thing from my mind---and then told her I would love nothing more then to just eat something without causing pain.

My God---I was so shocked

Now I get snide remarks behind my back because I gained a little more weight back then I wanted. A close friend informed me of this a while back---as she knows the **** I went through. You would have thought they would just be happy for me that I can obviously eat now. Even though my motility is slow---at least I can eat. Better then what it WAS like.

Julie :0)

[Merrill]

This is sooo interesting to me. I posted about being thin on the other question about diet/protein... but yeah--oh my gosh how mean people can be!!! From high school through my late 30s, when I finally put on a little weight, I got the most obnoxious comments and stares from people! It was horrible... and of course I didn't know why I was thin either since I ate and tried to gain weight (tons of milkshakes and stuff to add calories). If I had only known, I'd have offered a simple explanation, felt more confident in myself, and moved on. Life was TOUGH -- finding pants small enough to fit my skinny frame yet long enough to reach my shoes (I'm fairly tall--taller than the "regular" size 2s and 4s out there.) It's true that people are way meaner (out loud anyway) to skinny people than heavy people. ("Why are you so skinny?" I even got, "I hate you, you're so thin." Thanks a lot, buddy.)

OK, friends, I gotta go make dinner for myself!

Merrill

[futurehope]

I was definitely skinny as a child and I was ribbed mercilessly. I stayed real thin in my 20's and 30's - 5'8 1/2" and 125 - 128 lbs (which I finally considered a "normal" weight compared to what I used to be). Finally, in my late 30's, I began to weigh from 138-142. I now try to maintain my weight between 138-142 lbs.

It is now relatively easy for me to gain weight. All I have to do is begin eating foods with white sugar in them, and presto, I'll gain 10 lbs. But I do like to stay on the thin side. It's better on my joints, feet, and back, and helps prevent diabetes which runs in my family.

I sure do wonder if being underweight has something to do with all our stomach problems - a characteristic of dysautonomia? Or, I wonder it it is part of a syndrome we all have? Who knows?

[calypso]

I too am thin, but was pretty normal weight before POTS struck. However, I have always had a stellar metabolism and can eat anything I want. Now I'd give anything to gain a few pounds back. I am not, however, a muscular person ... I would bet I carry much more fat than muscle and I have never been a strong person.

What I can't figure out is why I am hypertensive at 28. I definitely don't have EDS! My family doctor swears it happens that young women rarely get hypertension, but I spent most of my teen and college years on a vegetarian diet and have never really been drawn to fatty foods. I have never been an exercise fanatic but have always been moderately active and played sports in junior high and high school. I kind of hope the hypertension will improve when the POTS goes away. (I say "when" in hopes that it will at least recede at some point!) I still think I have some weird adrenal issue going on but no one will do a 24-hour urine.

Amy

[lalalisa]

I too am thin. I am on the shorter side though. 5'4" and under 110 pounds. I've lost lots of muscle weight - I'm still thin but have no muscle definition like I used to.

Interesting posts,

Lisa

[Deb]

Losing muscle was part of my problem, too, when I lost that 40 lbs last summer. I was so weak, it was hard to put the groceries away or even unload the dishwasher. I'm not that bad now, but I don't have the strength I used to have.

Since I stopped the Florinef on Tuesday, I know I've lost some weight already. I believe it's because we have to use sooooo much energy each time we stand up. I'm sure most of you can feel your sympathetic nervous system fighting inside when you stand for very long. I tried to explain it to one of the doctors months ago as feeling like a war was going on in my chest. I swear it feels like my organs are battling each other for control.

I am curious about the digestive thing, too. I could eat as much as I wanted without ever worrying about gaining weight. I weighed 115 when I was 32 probably due to going through a divorce. I gradually added it back on and was at 135. I started really gaining weight though after I got married even though I didn't change my eating habits. I wonder if somehow my autonomic nervous system was going wacky as early as then. I definitely had GI problems that began around that same time. And, I had episodes when I almost fainted when I was too hot. Looking back, those episodes resemble the ones I have when my BP goes too low.

After reading all of your posts, I wonder if there is a connection with being thin and being succeptible (spelling?) to disautonomic problems. Yes its "very interesting".

[ethansmom]

I am really interested in this topic. I've always been thin, currently I am at 5'8" 135 lbs, but have been as thin as 125 since being ill. The only time I ever gained weight in my life was during pregnancy (and then it really piled on- 80 lbs!!). But it came right off within about 7 or 8 months, and now I am still eating like a pig and TRYING to gain a few pounds. I felt MUCH better around 150 lbs, and my doctor wanted me to stay at that weight but I couldn't. I really, really wonder what this means?!

[Deb]

Yes, I wonder what this means, too. Maybe we all have some gene or something in common that others don't have. The Mayo Clinic asked for some of my blood for research purposes. Wouldn't it be great if they found some correlation, and then are able to correct it? I'm an optimist, and I will always believe that their is hope for us to have a more normal life.

[migraine]

This weight thing is curious to me as well. There were so many postings...I wonder how many people would post the other way about weight gain as well. I would imagine it works one way or another. Our POTS must completely mess up whatever balances weight in your body. I have gained 20 pounds with each pregnancy and it never came off. When I married I was 135-140 and about 5'6". I ate so poorly then.

Now I keep gaining no matter how well I eat. I have tried every diet and am mortified when I see my weight announced on T.V. as obese and see pictures of people eating buckets of ice cream and chicken. In fact I have trouble eating a lot due to symptoms of this stupid POTS....so why this weight gain? Because I am on my 4th child every doctor has just assumed I've fallen into the same rut as many women with kids and let myself go. I really think it is POTS related and after this pregnancy I'm going to look into thyroid and hormone issues and see if I can be given POTS benficial drugs that also promote weight loss. I was on topomax for awhile which was supposed to make me lose weight, but nothing happend.

I understand your pain of being thin...but I can't help but think I would much rather have a weight loss problem than a weight gain problem. My sister-in-law is anorexic and wears a size o. She is very emotional about her weight. I used to sing in a band and I was mortified one night when an audience member said he loved it when the "heavy girls got up to sing." About an hour later someone told her, "I hate you because you're so thin!" We sort of looked at each other and realized we were sort of in the same boat. Most people would not say anything to an overweight person, but make comments to thin people because in this society they think they are actually giving a compliment.

The thing that I notice most is that there doesn't seem to be a steady weight gain or weight loss. Most of us seem to add or lose many pounds in a month or so. Unless you're eating tons or not eating at all this would not make sense. It just has to be a POTS thing!

While I still sort of , in a sick way, envy your thinnes problem...I will certainly be more aware before I make comments about anyone's weight....gain....or loss.

[Guest Julia59]

I now realize that is DOES NOT feel like a compliment when someone refer's to being thin. I was there. But now i'm on the other side---gaining, and like migraine, I eat more healthy--less fat---less calories---then when I weighed 116.

Here's my theroy---for what it's worth. I think a rapid weight loss can make POTS symptoms worse---or may even be a trigger to BEGIN ANS dysfunction. Then there are other disorders that co-exist with POTS----like EDS. It seems a good majority of the individuals affected are usually quite thin.

There are so many problems that can run secondary to POTS which can cause eaither weight gain------ or loss. The meds we take can cause weight gain-------or loss. Our endocrine system (i.e.-> hypothyroid) is usually affected---again weight gain. The problems with WEIGHT GAIN is that people are stereo typed as "healthy"-----------------hearty---when in fact some are very sick with all kinds of problems. At the doctor's office they are usually treated different---or their health problem is treated as if it were caused by their weight. When I had LOST a lot of weight----I was also stereo typed as anxious, having excessive anxiety, eating disorder, post tramatic stress syndrome---and so on. Can't win for losing I guess.

I know I was treated with less concern by many of the Docs---that some of you even know, because I had went from 123 to 150 in less then a year. The only thing that changed for me was the fact that I could eat after I started my Wellbutrin. I was less fatigued also---so you think I would stay stable with weight since I could be more active. My symptoms have gotten worse then usual---fatigue,slow gut motility, pain everywhere, poor balance----most of the things I had before my neck surgery---except the hyper adrengic attacks. I'm certain if I had those there would be weight loss again.

It just seem's people need something to gossip about (fat or thin)----very discouraging. Even Doc's...............

Julie :0)

[goldicedance]

I take credit for raising this topic to the radar screen. What I was really trying to get at is the following: Can you attribute your POTS flare ups or onset to a loss of weight? Or, a gain in weight? This is immaterial to your normal weight. I somehow see a correlation between sudden and severe weight loss to exacerbations of POTS.

Any thoughts?

[ethansmom]

Lois-

I would have to say YES only because I had just come off Paxil AND the Birth Control Pill within months of the onset of POTS. Why did I stop those meds? Because they made me gain a few pounds that I would love to have back now My doc had me on Paxil because my BP was running low and I was exhausted all the time- I took it for about 6 months and then came off because of the side effects, which would explain why the POTS symptoms might have come on so suddenly at that time. I had stopped the pill around that time as well, lost the weight, then gotten sick and lost more weight until I was about 125 and couldn't eat at all. I got pregnant soon after that and gained 80 lbs and felt fabulous!! Then I felt great after the baby was born too for a good 7-8 months (and consequently started having symptoms worse again as soon as I hit about 140 lbs).

So I definitely see a correlation. But still, I just wonder why?

[Deb]

Hmmm. I started feeling bad after I gained the weight. Then when I started having more POTS symptoms, I lost it all and continued to have even worse symptoms. Then when I was at my very worst, symptom-wise, I lost even more very fast. So, I think I would say yes, too. But none of the weight gaining and losing was intentional. That's another puzzle piece.

[EarthMother]

Most of my really bad POTS episodes seem to be correlated with rapid weight loss. One of my cardiologists back 5 years ago -- when they called it OI instead of POTS -- said that this was common for models (tall thin frame). I am 5.5 and feel good around 125-130, however there are times when I have rapid weight loss (unintended) and drop down to 110 or less within a week or so and then I pretty much have a total POTS crash.

The saying "You can never be too thin or too rich ......" certainly isn't the case for us. Ok, maybe just half of it. I'm still waiting to test out the latter clause.

EM

[calypso]

I think in my case, the POTS is causing my weight loss. Sounds like with others here, the weight loss can make POTS worse. I feel like my body is in overdrive; my heart is racing, my blood pressure's screwy (mostly high), I'm burning calories faster than I can keep up eating. If I didn't have high BP, I would probably enjoy the eating part more, but now I feel like I have to worry about eating too much fat.

[Guest Julia59]

I don't refer to this discussion to be "gossip". In fact I find it very interesting. as weight loss---especially sudden, can trigger POTS.

What I mean by gossip---is all the mean things people say about those who are THIN---OR FAT. I also found it very interesting how much concern I got from everyone when I lost weight-----then when I gained weight, and still felt fairly unstable health wise, the concern just disappeared..............................

Julie :0)

[Deb]

Hey Julie, I don't think anyone thought you were refering to this discussion as gossip. People can be so cruel.

I know what you mean about being thin and then heavy, too. People really do treat you differently. Everyone is forever saying how thin I am, and people who don't even know me say things like - "You must exercise a lot and know how to eat right". Like only thin people exercise and know about nutrition! Sometimes I want to shake them and tell them how hard it is to make yourself eat when your stomache hurts, and everything tastes the same, and it takes so much energy to just sit at the table. I told that to a couple of close freinds at work, and to my surprise they said, "Gee, I wish I had that illness."