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xenith

380d

I have yet to be officially diagnosed for either of these things, but many people, including doctors and myself, suspect i may have EDS. I have an appt next month to get more opinions for it, but i am also now worrying i may have POTS which i know comes with EDS a lot, but because i’m not diagnosed with either it feels wrong to think about it. i’m also just not sure how to bring that up to any doctor because it has already been a struggle to get where i am on the EDS suspections, but i don’t want to self diagnose. is it wrong for me to think this stuff when i’m not even diagnosed?

Top reply
    • E11iefant

      378d

      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❤️

    • Finleaf

      378d

      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 💜

    • E11iefant

      378d

      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❤️

    • Zebragirl

      378d

      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

      • xenith

        378d

        @Zebragirl i’m located in pennsylvania, but i’m not sure where to join these groups

        • Zebragirl

          378d

          @xenith do you have Facebook? That's a good outlet

    • Student_girl

      379d

      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

    • RainbowNarwhal

      380d

      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.

    • Alyss

      380d

      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!

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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It is not wrong for you to consider the possibility of having POTS along with EDS, especially if you have symptoms that align with these conditions. It's important to discuss your concerns with your doctor during your appointment and ask for their professional opinion. They can help guide you through the diagnostic process and provide appropriate testing and referrals if necessary.

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