Dysautonomia

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Dysautonomia
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    just needing some encouragement, i think.

    i am really frustrated. i have a really big bump in the middle of my stomach— upper abdomen area. it’s been steadily growing. my GI doctor ordered a CT enterography with IV contrast, and it didn’t show anything related to my stomach at all (this was after we’d also done some other non-invasive tests). i have a lot of other medical problems to deal with right now, but this bump really hurts and has been there for over a year now (actually, it’s been there so long that i’ve given it a name, just to spice things up a bit 😂). i’ve been worried we’re missing something for years now. i mean, it took from 9 years old to 12 years old just to get a diagnosis of CRPS, and at 18 years old (only a year ago) i finally received a few other diagnoses that explain things a bit better. but i’m still in so much pain, and my stomach is still a mess. i try to be so positive but i think my frustration sort of hit me just now, because unlike most of the time, i actually have a visible issue (aka the bump) attached to the pain i’m experiencing with it (like, this bump makes it nearly impossible to eat/have anything in my stomach without feeling like i’m imploding sometimes), but tests aren’t showing anything. i’m doing everything my doctors have told me to, even though it is extremely hard, but i just am not getting better. i don’t even care about diagnoses at this point. i just want to feel better, or even just be able to function even at a low level for a whole day! i’m not sure what i need, maybe i just needed to rant to a community of people that might understand. but if anyone has anything that might help, even just some life advice, honestly, that would really help. 💜
    #RareDisease #Gastroparesis #EhlersDanlosSyndrome #ChronicIllness #ComplexRegionalPainSyndrome #AutonomicDysfunction #Dysautonomia #PosturalOrthostaticTachycardiaSyndrome #WritingThroughIt

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    Community Voices

    I’m new here!

    Hi, my name is Floorstuut. I've been diagnosed with Dysautonomia (POTS/IST). I am looking for treatment options and hope to hear from/speak to other people with a chronic illness.

    Community Voices

    Can anyone tell me how long it took you to get into or get on the appointment list for dysautonomia testing? I’m being told it’s a 6 month to 1 year wait minimum if I’m willing & able to drive 4 hours away to Chicago. It’s 1-2 year wait if willing to drive to Minnesota (several hundred miles away and 2 states over). Any other info you can give about it? Thank you for any information or advice you can share.

    3 people are talking about this
    Community Voices
    JN59

    Has anyone tried a low histamine diet?

    I want to try this since mast cells can be involved with excacerbating Dysautonomia symptoms.

    Community Voices

    I'm new here!

    Hi, my name is Jwalkerobrien_2012. I'm here because I need to be able to communicate with others who understand what I'm going through.

    #MightyTogether #Dysautonomia

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    Community Voices
    JN59

    How do/did y’all handle the season before seeing a Dysautonomia specialist, if you have been able to see one?

    I have POTS, but I haven’t been able to see a specialist yet. I guess that means I haven’t been officially diagnosed yet either, since it was just my primary care doctor who brought POTS up. I have all the symptoms though, and it’s quite debilitating. I don’t faint, but if I overexert myself I may have palpitations dizziness, and sometimes chest pain for hours or days.

    These days I’m focusing on doing what I can to get better (hydration and recumbent exercise), and trying to set lower expectations for myself so I can enjoy life a little bit. Like getting my friends together on Zoom instead of in person, and using the spoons theory when thinking about chores, self-care and exercise.

    I have gotten slightly better with lying down exercise, but I just wish I had actual medical help, you know? I’m impatient to actually be able to do stuff like walk outside, wash my own dishes, and eventually go back to college. Since I don’t faint, sometimes I wonder if my condition is not severe enough to get proper medical attention, especially with doctors so busy these days. But it feels severe to me, you know?

    I’m sure y’all have to deal with stuff like this too. How do y’all balance the desperation to get better and the need to take life one day at a time?

    6 people are talking about this
    Community Voices

    Comorbities with POTS

    I was diagnosed with dysautonomia/neurocardiogenic syncope in 2003. I was recently retested and diagnosed with POTS. I have suspected I may have hypermobile EDS for the past year (I am very flexible and have been all my life. I’m talking turning my arm all the way around so my hand faces forward again) and possibly mast cell activation syndrome since I have sporadic, unexplained rashes, among other things. Has anyone else been diagnosed with these conditions too, and if so, what doctor diagnosed you and what testing was involved? I’m still learning how to advocate for myself and who to even talk to about all these things.

    2 people are talking about this
    Community Voices
    JN59
    Community Voices

    I'm new here!

    Hi, my name is CSakina. I've been diagnosed with Dysautonomina.

    #MightyTogether #Dysautonomia

    2 people are talking about this
    Community Voices