Guest dionna Posted December 8, 2006 Report Share Posted December 8, 2006 i heard that most pots patients are tall skinny females. i do not fit that in that i am 5' 1". i do weigh 90 lbs and i am female. i was just wondering how you all compared.thanks,dionna Quote Link to comment Share on other sites More sharing options...
cardiactec Posted December 8, 2006 Report Share Posted December 8, 2006 a neuro told me most POTS patients are under their BMI. he didnt say anything about their height, although i have heard that MVPS people are tall and slender............i am 5'8' and weigh 119. Quote Link to comment Share on other sites More sharing options...
persephone Posted December 8, 2006 Report Share Posted December 8, 2006 I'd heard short and dumpy! That's definitely my category! Quote Link to comment Share on other sites More sharing options...
taylortotmom Posted December 8, 2006 Report Share Posted December 8, 2006 I'm the prototype for the MVPS girl- tall and scrawny. I'm 5'10 and my normal weight is 135 however, thanks to my recent bout with e coli I am way, way down (my pants are falling off!). My doctor is not going to be happy with my weight loss so I'm trying to gain some before I see him!Carmen Quote Link to comment Share on other sites More sharing options...
ode_to_fantasy Posted December 8, 2006 Report Share Posted December 8, 2006 I'm 5'9, but definitely not skinny. My dr. was suprised that I had POTS. Quote Link to comment Share on other sites More sharing options...
thejohnsongang Posted December 8, 2006 Report Share Posted December 8, 2006 I've never heard any assumptions on height and weight being a factor. I short and on the heavy side and still have pots. I did see that on the votes that all responding so far are female......may be a trend or maybe guys just don't like to seek support as much as women.Nolie Quote Link to comment Share on other sites More sharing options...
India Posted December 8, 2006 Report Share Posted December 8, 2006 Just a little over average height and just over my healthy BMI, so definitely do not fit the "tall and skinny" definition. In fact, when my symptoms started worsening was after I had lost 40lbs! May or may not be coincidental.India Quote Link to comment Share on other sites More sharing options...
JenniferInOhio Posted December 8, 2006 Report Share Posted December 8, 2006 I've never heard of tall, skinny POTS assumption before.That said, I'm 5' 8 1/2 and 118. And pale as can be. Quote Link to comment Share on other sites More sharing options...
mkoven Posted December 8, 2006 Report Share Posted December 8, 2006 I'm short and roundish... and female Quote Link to comment Share on other sites More sharing options...
Guest dionna Posted December 8, 2006 Report Share Posted December 8, 2006 thank you all for the votes and replies. yeah i agree that most males probably don't reach out for support the way us "women folk" do . but a select few do. dionna Quote Link to comment Share on other sites More sharing options...
juliegee Posted December 8, 2006 Report Share Posted December 8, 2006 I've heard of the tall, thin POTS description, I guess that's me: 5' 9" at 128lbs. But clearly, POTS seems to come in all sizes. My 14 year old son's dyautonomia and motility problems started during a RAPID growth spurt. He went from 5' 7" (100lbs) to 6' 1" (145lbs) in a year! His docs have even theorized that with the incredibly fast growth spurt, his vagus nerve hasn't quite caught up. I, also, had a major growth spurt around 13-14 years old. I guess my vagus nerve still hasn't caught up! Julie Quote Link to comment Share on other sites More sharing options...
futurehope Posted December 8, 2006 Report Share Posted December 8, 2006 Now that we're on this subject.....I'm about 5'8 1/2" Once when I went to the doctor and weighed 128lbs, she gave me a song and dance about being underweight and how I was at risk for infections.Now, I'm about 132 lbs. After seeing all of your weights, I feel normal. I consider 132 normal and average for me.I think the problem lies in that I'm 55 years old. Doctors and other people do NOT expect people to be normal weight unless they are highly paid celebrities.Frankly, I get tired of people telling me I look thin or skinny (including my mother). I feel I'm the correct weight. And comparing myself to you all, I am.Thanks for making me feel normal.As for the "tall/thin" profile. I fit that to a tee growing up. Quote Link to comment Share on other sites More sharing options...
jhjd Posted December 8, 2006 Report Share Posted December 8, 2006 I'm 5'9, but definitely not skinny. My dr. was suprised that I had POTS. Describes me perfectly! Though I'll say I was closer to skinny when I first got sick. I've got too many curves to ever be described as skinny, though I often wish I could be- but, on the bright side, I have been told I have an exceptionally fine butt for a white girl! (Proving, as we've discussed on another thread, that it does indeed take all kinds). But my dr. was not surprised about the POTS diagnosis. He actually said I fit the POTS physical profile far better then a previous diagnosis of PCOS. So who knows! Quote Link to comment Share on other sites More sharing options...
Lukkychrm42 Posted December 8, 2006 Report Share Posted December 8, 2006 That's definitely a typical characterization, but also more likely for the younger ones, and particularly those who get dysaut. in adolescence. I have always had a very muscular build, thanks to my genes, and even when I was a size 2 I weighed about 125 lbs. That was before the steroids. Quote Link to comment Share on other sites More sharing options...
Tessa Posted December 8, 2006 Report Share Posted December 8, 2006 Female, around 110 pounds and 154 cm tall Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted December 8, 2006 Report Share Posted December 8, 2006 I'm short and medium build... when I was better at working out, I had a gymnast build... sturdy legs and arms... now they're just a bit mushy. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted December 9, 2006 Report Share Posted December 9, 2006 I have heard POTS referred to as the "model's disease"--but there are plenty of different body shapes that experience POTS. I think POTS can be worse when you are thin b/c you can have more trouble maintaining blood volume. I am 5'10"+ and weigh 150. Prior to pregnancy I weighed 135 or so. I have always been very thin--however now I am within the "normal" BMI range.Katherine Quote Link to comment Share on other sites More sharing options...
dizzygirl Posted December 9, 2006 Report Share Posted December 9, 2006 well im 5'4" and up until i was about 17 ish.. I was as skinny as a rail... I had pots then.. just ddint know it.. however at the tail end of 17 -18.. i began having alot of hormonal probs. then a severe worsening of pots... and i gained alot of weight.. much more then i care to publically admit!!I ve never heard of the stero typing of tall ans skinny for pots.. that a new one onme.. I ve heard that for EDS.. But not pots..if your ans system is wacky its going to be wacky no matter how skinny or "plump" you are i think.. Quote Link to comment Share on other sites More sharing options...
Rachel Posted December 9, 2006 Report Share Posted December 9, 2006 I've heard the tall, skinny, and female stereotype for POTS patients. I used to be tall and skinny. I'm still tall, but not quite as skinny. When I started haveing life-altering symptoms I was 14 and a year round swimmer. But POTS has certainly changed my exercise habits, so I'm not skinny anymore!Rachel Quote Link to comment Share on other sites More sharing options...
sfrnklin Posted December 10, 2006 Report Share Posted December 10, 2006 Ladies with Joint Hypermobility Syndrome are tall and thin. Many ladies POTS is secondary to LHS such as mine according to Dr. Grubb. Quote Link to comment Share on other sites More sharing options...
Maxine Posted December 11, 2006 Report Share Posted December 11, 2006 First poeple with EDS are not always really thin---I have joint hyper mobility type EDS III, with both skin and vascular involvement. I'm not tall, and not thin, but most of my life I was really thin. I gained weight after my POTS from the MEDS..........I think sometimes were stereo-typed as being thin and pale looking. Well, that can't be further from the truth------That's why we hear----"you look so good". I do think that some folks who have POTS, and are very thin tend to do worse. I know when I crashed and lost over 25 pounds I was pretty bad---went from a size 10 to a size 6.Now I'm worse in other area's, but better in other's. I gained all my weight back plus another 10 pounds. Recently I lost 15 pounds again----but by slowly cutting refined carbs.Out of all the people I have met with POTS, and I have met a lot, I would say about 1/3 of them were really thin. I'm average----5ft. 4in. and about 150 pounds, but could be less now. I haven't weighed myself, but my size twelves are getting big. My bone structure is bigger, so I have been told I don't look my weight.Although I agree with Katherine about POTS being worse for thin folks due to low blood volume, I have seen some people get other complications-----i.e.---------->hormones being a train wreck, then they gain excess weight, and have additional issues because of the wacky hormones.Then we have all the different medications that can make some people gain weight----or lose weight. In my case the Wellbutrin made me gain weight. I never really had to watch what I ate, as I was thin all my life. The medications---BBs, and Wellbutrin can both cause weight gain-so can a lot of the other meds used to treat POTs symptoms.Sadly, I have noticed how heavier people with POTS have dealt with ridicule and abuse from some DOCS, or their just not taken very seriously------------(ignorant Docs thinking "fat" means healthy). Then I have seen thin people treated by some of these same Docs taken more seriously, and also treated with more compassion and understanding. That's just tragic!Maxine Quote Link to comment Share on other sites More sharing options...
Kitsakatsa Posted December 11, 2006 Report Share Posted December 11, 2006 I'm overweight. I wish that I was lanky thin. It would make it easier, because I wouldn't kill myself with exercise constantly. I have horrible intollerance to exercise, meaning that all is good and fine when I'm exercising, but then the next AM, I will have no BP and POTS symptoms all over the place. I guess this isn't the WHINING forum, so I'll stop now. What an interesting Poll!! Quote Link to comment Share on other sites More sharing options...
Guest dionna Posted December 11, 2006 Report Share Posted December 11, 2006 i am glad so many of you are responding... thank you!!! i just wish more males would. i still haven't gotten anyone to say they were atleast 6' 0.25" yet. i kinda expected to but i see that didn't happen. lol. dionna Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted December 22, 2006 Report Share Posted December 22, 2006 Sfranklin, it's a myth that ladies with HEDS are tall and thin. I'm short and round and have a confirmed diagnosis of HEDS. My mother and sisters are all under 5 feet, and all three have classical type EDS, with skin problems and keloids (keloids in caucasians are quite uncommon, so to have three very white women with them in one family is unusual).The ENDF website has a section on "all types" which dispels myths--unfortunately, many doctors are still taught the incorrect info that eds folks are tall and thin--hence, they often skip over the possibility of Ehlers Danlos as a diagnosis because of their incorrect assumptions about what type of person is likely to have the disorder.Nina Quote Link to comment Share on other sites More sharing options...
SunsetParadise49 Posted December 26, 2006 Report Share Posted December 26, 2006 Yep it's a fact that HEDS folks are not tall and skinny. On my EDS board (not EDNF) we did a poll on this and the results were all over the place. Some people were skinny but most were not. We also have many tall people as well as short! Quote Link to comment Share on other sites More sharing options...
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