LastUnicornLady Posted January 15, 2014 Report Share Posted January 15, 2014 What are some of the most frustrating things about people's misconceptions about POTS and dysautonomia? Quote Link to comment Share on other sites More sharing options...
dkd Posted January 15, 2014 Report Share Posted January 15, 2014 I have heard most of those, but I can't say one of them bothers me more than the others. I guess I've come to not discuss how I feel with anyone, cause I usually get one of those responses. I just suffer in silence-haha.I did say something similar to your signature line to my primary care doc (who has not helped me and I probably will not see again)--either I'm going to get better or I'm going to get worse-I guess time will tell.I think the one that bothered me the most was that she said she hated to see people be victims of their symptoms--while she was trying to talk me into taking an antidepressant. Quote Link to comment Share on other sites More sharing options...
gjensen Posted January 16, 2014 Report Share Posted January 16, 2014 The one that got me most was "You are looking for something to be wrong.". This was without an interview, but reviewing my inconclusive records. Which was a bit extensive, I admit. I voiced my concern with is approach, and he changed his tune. I still never went back. That was a deal breaker for me. Hi office called and said that he had ordered some tests and asked when I could come in. I told them I was not. Never heard any myths. No one was familiar enough with it to believe any myths. I had one doctor ask how to spell dysautonomia for his records. Quote Link to comment Share on other sites More sharing options...
Raisin Posted January 16, 2014 Report Share Posted January 16, 2014 My neighbor said I just need to get in shape. When I said Dysautonomia is not a result of being out of shape, he rolled his eyes. I decided to walk away from that conversation because I wasn't going to win. Quote Link to comment Share on other sites More sharing options...
westernmass Posted January 16, 2014 Report Share Posted January 16, 2014 Ha! I had a hard time picking one from the list, and I'm sure there's so many others! This is a funny poll Quote Link to comment Share on other sites More sharing options...
Becia Posted January 17, 2014 Report Share Posted January 17, 2014 "You look like you're doing better." Never mind the fact I had to change clothes because I passed out, had a seizure, and peed in myself, or the fact that four months ago, I could walk a little bit, and now I'm stuck in a wheelchair. Quote Link to comment Share on other sites More sharing options...
gjensen Posted January 17, 2014 Report Share Posted January 17, 2014 "You look like you're doing better." Never mind the fact I had to change clothes because I passed out, had a seizure, and peed in myself, or the fact that four months ago, I could walk a little bit, and now I'm stuck in a wheelchair.LOL. I hate to laugh, but I can relate. I am not laughing at you, but with you.That was good. Thank you. I needed a laugh. Quote Link to comment Share on other sites More sharing options...
Becia Posted January 17, 2014 Report Share Posted January 17, 2014 Lol, it's okay. Sometimes laughter is how I keep from strangling people, lol. Quote Link to comment Share on other sites More sharing options...
srb Posted January 17, 2014 Report Share Posted January 17, 2014 The one that got me most was "You are looking for something to be wrong.". This was without an interview, but reviewing my inconclusive records. Which was a bit extensive, I admit. I voiced my concern with is approach, and he changed his tune. I still never went back. That was a deal breaker for me. Hi office called and said that he had ordered some tests and asked when I could come in. I told them I was not. Never heard any myths. No one was familiar enough with it to believe any myths. I had one doctor ask how to spell dysautonomia for his records.My one doctor kept mispronouncing it repeatedly during a visit. That made me a little skeptical of her knowledge or lack thereof! Quote Link to comment Share on other sites More sharing options...
JenLR Posted January 18, 2014 Report Share Posted January 18, 2014 I have had two people email me recently and say that they know several people who have POTS that have been cured by taking Plexus Slim. And of course, they'd be more than happy to sell me some. So annoying and insulting on many levels! Quote Link to comment Share on other sites More sharing options...
NaomiSpellman Posted January 19, 2014 Report Share Posted January 19, 2014 "We don't see anything wrong with you. But if you experience any changes, let us know."said to me by my then-GP, who pulled in several staff members to stand around me in a threatening manner, while I sat in the middle. They never ran a single test though I came in 4x that year to try to get them to help me. And *** does mean "changes" to a POTSIE anyway?! There are nothing but changes. No day is the same. Every day is full of surprises. "May you live in interesting times", indeed! May you live in an interesting body. Quote Link to comment Share on other sites More sharing options...
galatea Posted January 20, 2014 Report Share Posted January 20, 2014 I’ve had every single one of these – it totally defines the experience of having POTS. The one that bothers me most is ‘I get that too’, I just want to scream ‘NO YOU DON’T!’Unbelievable the amount of people who when I try to explain my symptoms and condition just refuse to take it seriously (including doctors of course). Quote Link to comment Share on other sites More sharing options...
Freaked Posted January 20, 2014 Report Share Posted January 20, 2014 A psychiatrist told me my tilt-table results were from 'lying in bed'. Never mind that those exact symptoms were what made me become inactive in the first place and started very suddenly. But he was a scary guy. Quote Link to comment Share on other sites More sharing options...
gjensen Posted January 20, 2014 Report Share Posted January 20, 2014 Another one that disturbed me was, that is not my specialty. Every specialist, lol. Quote Link to comment Share on other sites More sharing options...
Libby Posted January 21, 2014 Report Share Posted January 21, 2014 "You're lucky to have a doctor who understands. When I was in medical school,I used to spend a lot of time sitting around studying. When I would stand up, sometimes I would get a head rush. So I get it." - a cardiac elecrophysiologist whom I obviously never went back to. Quote Link to comment Share on other sites More sharing options...
LastUnicornLady Posted January 21, 2014 Author Report Share Posted January 21, 2014 It's really interesting to read everyone's responces to this, and I hope it made you laugh a little. Sometimes you just need to laugh at the absurdity of it all. I mean, here I am, feeling the worst I've ever felt in my entire life, and you're telling me I'm imagining it? I had never experienced this extent of exhaustion, pain, etc. until now... I could never have thought it up on my own. Or when they "try" to relate, but it really only ends up feeling like they've implied my problems aren't really a big deal. That they're normal, day-to-day issues that everyone has. Or when they tell you that you just need to exercise more... WHAT?!?! I was an icredibly active tennager in the prime of health, when all of a sudden I could barely make it through one class. What the heck?! I was excercising three times a week before I got sick. How would "just excercising" or getting out more cure me of the very illess that took away my althetic abilites??? I don't get it... Quote Link to comment Share on other sites More sharing options...
MomWithPots Posted January 25, 2014 Report Share Posted January 25, 2014 I was trying to explain my pots to my nutrition professor today; he cut me off and said "I know what pots is! That things where u get a little dizzy when u stand up." Yeah...that's all it is! Gosh, wouldn't that make life much easier Quote Link to comment Share on other sites More sharing options...
gjensen Posted February 1, 2014 Report Share Posted February 1, 2014 I was trying to explain my pots to my nutrition professor today; he cut me off and said "I know what pots is! That things where u get a little dizzy when u stand up." Yeah...that's all it is! Gosh, wouldn't that make life much easier I wish it was that easy to. I would not be laying here typing this.I wish that I could one of these doctors just my head symptoms for a day. Just one 24 hour set, and nothing else. Quote Link to comment Share on other sites More sharing options...
TCP Posted February 1, 2014 Report Share Posted February 1, 2014 I think with having ME/CFS and the Autonomic/Peripheral Neuropathy and POTS as part of this nice bundle of conditions which no one fully understands or knows how to treat properly...well at least in the UK anyway. I explain to people what's wrong with me and then it washes over them and they come out with stupid comments such as I look well and they get the same problems etc. They acknowledge that they don't understand it and then go on to make suggestions about what I should be doing, like I've been on another planet for 30 years and have learnt nothing about my condition. The fact is I know more than anyone what it is like, what it is and what I can and cannot do. I have become my own physician and adviser. Apart from my mum no one knows what I go through or problems that I have. I have had some crass comments from family and friends over the years. My ex-boyfriend typically made remarks about what I should be doing like going out walking and socialising as if that was some sort of cure. He didn't like me to use my walking stick as he didn't believe that I needed it, but he regularly witnessed my wobbly walking, falls and extra pain. He thought if I did normal things that I would be healthy, which is basically what he wanted me to be and yet this guy never did anything other than watch TV. Doctors find lots of things wrong with me but just offer me drugs and send me on my way. No is there to look at my problems as a whole. I have had several doctors say that they don't understand my condition and that equates to them not being sure what to do with me. However, I have noticed a few doctors in the past year being more accepting of the ME which definitely led to the autonomic dysfunction and POTS. I think we all have to educate and inform... Quote Link to comment Share on other sites More sharing options...
blobbydodger Posted February 6, 2014 Report Share Posted February 6, 2014 My doctor said to me on the last visit " Are you just looking for something to be wrong, he then went on to explain that some people can have a pain in their knee for years and not be bothered, but others will get the slightest twinge and go to the GP seeking tests.I was annoyed and felt like giving him a black eye and saying back to him "some people get black eyes and don't moan whilst others cry about it"......obviously i didn't because its not nice and i wouldn't have the energy to anyway lol Quote Link to comment Share on other sites More sharing options...
TCP Posted February 18, 2014 Report Share Posted February 18, 2014 I had a respiratory doctor say something similar to me last year. I was undergoing sleep studies as I have lots of problems sleeping and have wakefulness, nightmares, twitching/jerking, apnoea and cessation of breathing, tongue-biting etc and he didn't think there was anything abnormal about my sleep and said it was just about my perception of the problem being different to other people. So is it normal to stop breathing (three people have witnessed this happening)? Is it normal to bite my tongue to ribbons as my head violently jerks? It is unbelievable what people say.... Quote Link to comment Share on other sites More sharing options...
KittyMama Posted March 2, 2014 Report Share Posted March 2, 2014 I hate it when I tell people I have low blood pressure and they say "That sounds great! I wish I had that." (They want to be able to salt their food the way I do, I guess.) Quote Link to comment Share on other sites More sharing options...
corina Posted March 3, 2014 Report Share Posted March 3, 2014 For years we've been told that low bp is a good thing, that high bp was risky (and it is!). It seems that over the years doctors are figuring out that low bp can be very risky too! I read an article last year that mentioned the risks of low bp, that was a first for me! Quote Link to comment Share on other sites More sharing options...
UnderwaterThing Posted March 3, 2014 Report Share Posted March 3, 2014 I was working on a PhD when I got ill and the primary doctor I had at that time said "You didn't have a heart attack. Go back to school!" I also had an endocrinologist pat me on the head like I was a little girl and told me I was imagining it. If a doctor says anything like that to me now, it's a deal breaker. I find a different doctor. I've come too far to have to fight so hard to make them believe me. Quote Link to comment Share on other sites More sharing options...
spinner Posted March 5, 2014 Report Share Posted March 5, 2014 My sister a nurse told me "you just have the same aches and pains of anyone else your age" Quote Link to comment Share on other sites More sharing options...
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