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tatertot731

598d

today for the first time in awhile i did some mild exercise to see how my body will react. it was basically what i expected and similar to before. i sometimes make myself think i’m faking having dysautonomia(even though im definitely not) because so many of my symptoms don’t show on medical tests and very few believe me. does anyone else feel the same or have the same experience regarding their symptoms and medical tests?

Top reply
    • SunInAugust

      498d

      @Zoey_Val you're describing my life to a t. Im sorry you relate. And I'm relieved to not be alone

    • Undiagonsed

      558d

      Each person is different. For instance, I have high blood pressure. So I need to be care of consuming too much salt. Also exercise for me with waste my energy and be drain the the next couple of days.

    • Undiagonsed

      558d

      mack7315 have you have tilt table test? I was diagnosed with the sweat test. Which is include in that test.

      • tatertot731

        557d

        @Undiagonsed i have had a tilt table but it didn’t tell the drs much

        • Undiagonsed

          557d

          @tatertot731 keep searching.

    • Zoey_Val

      561d

      I’m the same I think I’m in denial still after two years of having Long Covid/POTS. I always have good and bad days/weeks and I never know when they’re coming! Exercise has been so hard for me as well and especially grieving what I used to be able to do but I keep on having hope and doing a little bit at a time ❤️ I have fainting spells as well and a resting heart rate above 100 so I’m getting used to figuring out what my body is capable of and giving myself some grace

      • SunInAugust

        498d

        @Zoey_Val you're describing my life to a t. Im sorry you relate. And I'm relieved to not be alone

    • CK77

      561d

      I recently went into a cardiologist who took 2 minutes to flippantly look through my chart and tell me nothing was wrong with me despite being diagnosed by a dysautonomia specialist and geneticist. He saved me away like I was making things up. I left there feeling defeated and questioning why it is so hard to get doctors to listen. I understand what you are going through. I just wanted to scream it is not normal to blackout while driving. Losing that independence has been hard.

      • tatertot731

        557d

        @CK77 we could all have the worst symptoms that are far from normal but the drs rarely treat it like we have an issue

    • stajoy

      571d

      I hate it when you tell them you have Dysautonomia and everything ets and they still run test. I black out and faint all the time. I have one doctor telling me increase my salt and water and other doctors limit it. So confused

    • Lunarr

      597d

      I feel that way all the time. It's especially worse when I have good days, where I'm able to function decently well, it's like, "Oh, well! Maybe it's not that bad actually and it's going away and I'll be able to do everything I want when I want in no time!" And then I overuse energy I don't have and crash and burn, repeat cycle infinitely lol I also relate with doctors and testing. My old cardiologist dismissed my concerns that her lowering my med dosage was causing worsening fatigue because my "test results/data don't show that". Wtf does that mean??? Like clearly I'm experiencing it whether or not all of my labs, scans, and monitors come back normal (which they all do, consistently, very annoying and unhelpful). I've had multiple doctors now look at the bp and symptom log I keep and go, "Huh... Your symptoms don't seem related to your blood pressure at all, that's strange". Not very motivating, that's for sure. I've been called an anomaly a few times It's hard to diagnose things that can't be explained or seen through medical testing. It's even harder to get others and yourself to believe in their existence/validity. Just know that your symptoms are very real because they are effecting you and that's all you need to know. Brush those other thoughts away like an annoying bug because they're just internalized ableism trying to make you doubt yourself and your understanding of your body. Doctors and other people can worsen these thoughts for sure, especially with medical gaslighting, but try and stay strong. You're chronically ill and can't do some things that healthy people can, and that's okay. Just because you know and respect your limits (leading to better well being and quality of life) doesn't mean you aren't still sick, just that you're getting better at managing it

      • tatertot731

        597d

        @Lunarr thank you that actually helps a lot to hear. i’ve been so hard on myself about it lately. because of my symptoms not showing on tests it took me over 3 years to get diagnosed and it was the worst thing ever

        • Lunarr

          597d

          @tatertot731 Sure thing! Being chronically ill is constant emotional ups and downs for sure so I feel you. Sorry to hear your diagnosis took so long! It certainly doesn't help that dysautonomia isn't well known or understood by most doctors. Glad you got a diagnosis eventually

☝ 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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