Concerns about EDS and POTS Diagnosis

It's not at all wrong to have suspicions, do research or to think you might have it, even if you don't have a diagnosis of EDS!! EDS isn't the only cause of POTS anyways, you can look at them seperately (even though in your case they are likely linked). I do hear you about what a struggle it can be to get heard out and get to the point of diagnosis, but that doesn't mean it's wrong to try or to consider it 💜

You can do a poor man’s tilt table test at home to see if you might have POTS! You’ll need something to track your pulse and a blood pressure cuff for the best results. You can find instructions on Google pretty easily. Also do not do this by yourself, have someone near you to write your bpm, bp, and other symptoms down and make sure you have a soft landing in case you pass out. After recording your results you can show them to your doctor! Hope this helps❤️

Not at all. I feel the same way. It's a gut instinct. No one believes me, but I know I'm right. Where are you located? You can join groups based on your location to find a doctor that people recommend so you know you won't be gaslit

It’s not good to “self diagnose” and claim that you do for sure have these conditions, but it is totally fine to suspect you have them and bring this up with your doctor. Just make sure to be open to their response, if they say that it is a possibility and you should test for it or if they say that that specific condition doesn’t fit and look for other causes

It can be completely reasonable to self diagnose sometimes, especially with these "rare" conditions that doctors seem to not want to diagnose, and especially because you have doctors who also suspect you have EDS. I sort of thought I might have EDS and POTS for several months, then got a new doctor who actually listened and asked LOTS of questions, and she brought up the conditions on her own based on my symptoms. I still technically don't have official diagnoses for either, but it's helpful to kind of assume that for now and the diagnoses can come a little later.

This is complex because it depends on the attitudes of your doctors. I've had some that put off testing me for anything and blame stuff on my weight or my messed up brain (psychosomatic). I've also had others I can go to and say "Hey, I wanna be tested for this because I have 9 of the 10 symptoms, and even if it's not that, it'll be good to know going forward because I still have those 9 symptoms." and they're good with it. I tend to abandon the first type of doctor because literally every single diagnosis I've received, I've self diagnosed because doctors aren't always better than the internet, and ultimately you know your own body better than they do. So if you bring up that you're fainting or dizzy upon standing and they don't at least do a tilt table test, they're bad doctors, and I would recommend you move on. Sorry if this wasn't helpful. Good luck!