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A burden too heavy

The harsh reality is that I'm just a burden to my husband and kids. Please don't try to placate me with the standard "they love you, they dont think that way" or "you're not a burden, that's all in your head." It's a fact. Due to my Dysautonomia it's not safe for me to spend more than one or two hours alone, someone always has to babysit me. I'm a black cloud sucking the life out of everyone I come in contact with. I have a three hour window tomorrow that I will be completely alone. I've been preparing for this day for months. Tomorrow I'm giving them their lives back.

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My doctors really thought I had dysautonomia (POTS)

Almost every doctor I went to other than my neurologist thought I had dysautonomia (POTS). I did my table tilt test and everything came back normal. I have the symptoms plus more which I didn't really think I had pots bc of this. I have sweats, lightheaded, dizzy, fatigue bodyaches, headaches, I have fainted once, brain fog, GI issues, fevers, night sweats, low blood pressure, face rash (comes and goes), joint pain (I woke up on night in extreme pain bc my shoulder popped), bodyaches, nausea, heart beat changes either fast or slow depending, my ankle as swelled as well as my hand and wrist, headaches. I have a positive ANA test. Is it possible that instead of having dysautonomia I could have an auto immune disease that's mimicking dysautonomia symptoms? I feel confused.. Everything just keeps coming back normal, and I'm getting no answers. I'm so exhausted and in pain everyday and lightheaded.. #AutonomicDysfunction #Lupus #ChronicFatigue #Dysautonomia #Ana

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How should I have reacted to...

My dear hubby of 8 years is several years older than me and had prostate surgery 6 weeks ago, and is experiencing some new discomfort while healing. A little while ago he said "Now I can understand how it feels when your body gets older and isn't working right!" Me... Ehlers Danlos and many weirdnesses that go with or beside that... chronic 24/7 heavy headache that I woke with on 11/11/2006, 24/7 dizziness and neck pain with that, brain fog that makes me leery of driving, respiratory problems (chronic rhinitis and chronic cough since a factory job my 20s --I'm 60--that has slowly worsened to hundreds of coughs per day and sometimes near vomiting and severely limits my social life), digestive motility problems and weight loss (5'4" and 97 lbs), nightly restless leg syndrome, 24/7 sciatic pain, joint pain and weakness, delayed sleep phase syndrome, GERD severely affecting my voice, esophageal spasms, dysautonomia problems and can't stand for long, an auto immune disorder that's now making holes in my hair, ear damage that causes buzzing and made it painful to play my piano, long Covid, a heavy blanket of chronic fatigue for years--and no solutions and few answers from anyone plus a couple of downright mean doctors. He knows all this. We'd talked earlier today and I told him I might try applying for disability benefits. He voiced support.
So... all I did to respond to his comment was show a brief... ironic smile. Him: "What? I'm trying to express support, that I understand!"
I tried to explain a bit (um, I have somethings else going on for many years); got frustrated acknowledgement but not real understanding, then I said sorry for my reaction to his attempt at sympathy. He WAS trying. But...
I dunno. What should I have done?

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The Invisible Illness Trap

I often think about the things doctors say to us, and how different their response would be if they could see our ailments. The caption to this self portrait of Van Gogh, is something a doctor said to me when I was so unwell from medication induced hyperthyroidism that it caused me to develop a near fatal cardiac condition. I was so nauseous, losing weight and struggling to keep any food down, that I begged him to help me even after he gave me this dressing down.

I can’t help but wonder what the doctor would have said if I’d walked into my appointment, with clear indicators of being physically unwell. And I don’t mean things like needing a walking stick or a wheelchair, because those were later used against me as “evidence” to prove that I was using my symptoms to get attention.

Van Gogh cutting parts of his ear off… might raise some mental illness questions to this day. But I think it’s unlikely that any doctor would ignore the state of his ear, tell he’d brought it upon himself, and that he needed to go away and “live with the consequences” of his decision in quite the same way.

#ChronicIllness #Hyperthyroidism #HashimotosThyroiditis #MyCondition #ChronicFatigue #MyalgicEncephalomyelitis #Fibromyalgia #EhlersDanlosSyndrome #Endometriosis #Arrhythmia #Dysautonomia #PeripheralNeuropathy #Migraine #PosturalOrthostaticTachycardiaSyndrome

8 reactions

I'm new here!

Hi, my name is angie_shea. I'm here because I live with several chronic illnesses, lupus (SLE) being the main one. I write poetry to help deal with the complexity and emotions of life with chronic illness and trauma and I want to further that writing and connection with others.
Angie 💜

#MightyTogether #Migraine #Fibromyalgia #PTSD #Lupus #Dysautonomia #Anxiety #ADHD #Gastroparesis

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Think Before You Speak

Sometimes I think “what will life throw at me next?”;
Will I receive a call from a family member or a friendly text?;
Since I became chronically ill I don’t hear from friends anymore;
It feels like – no matter how hard I tried to keep up – they showed me the door;
Maybe they couldn’t handle me being fine one minute and then convulsing on the floor?;
The fact that they unfriended me left with an open hole in my core;
Every morning I think: “what will chronic illness life throw at me today?”;
Will I have a debilitating headache or had it miraculously gone away?;
How many seizures will I have and how many falls will I endure?;
I pray that I’ll still be alive when the find that “magic’ cure;
How many dizzy spells will plague me – causing me to walk into walls?;
How many times will I lose my balance and take a hard fall?;
Will I be able to stand for longer than 5 minutes – or maybe less?;
Sometimes I want to stay in my bed all day – I must confess;
Will I have another IBS flare or will I experience terrible pain in my stomach?;
Or will I end up standing too long and feel my blood pressure plummet;
How many times will I feel like I can’t take in air enough to breathe?;
Will I have “internal tremors” or will you notice the flushing and hives on me?;
What will Dysautonomia surprise me with this day?;
Will my heart rate come down or is my heart rate of 170bpm be here to stay?;
Will I be able to remain standing long enough to make my lunch or will I collapse to the ground?;
Will my body cooperate enough to function and get me out of bed or will I again be bedbound?;
Can I find the strength to walk today or will I have to crawl on the floor like a child?;
Will my chronic pain feel like I’m being crushed or will it remain mostly mild?;
I wonder: what has my chronic illness had in store for me?;
If I stand will I be okay or will I lose my vision and temporally be unable to see?;
Will I be able to eat dinner without having terrible abdominal pain?;
Sometimes it feels as if I am stuck and that life has left me with nothing else to gain;
Today – will I be able to get a good night’s rest or will I be up gagging and in pain all night?;
Sometimes I feel like I want to give up and succumb to this unbeatable fight;
What will happen today – will I have enough energy to leave my house for awhile;
I’ll be in a wheelchair wearing AFOs and compression stockings like it’s come out of style;
Will I experience vertigo and severe nausea in the middle of the store?;
Sometimes I get dirty looks if I have to lay there on the Walmart floor;
How will my chronic illnesses affect me today – you may ask?;
For me – walking around without a mobility aide is no easy task;
What does Ehlers Danlos Syndrome have in store for me?;
Will my current visual issues cause my nerves to deteriorate – could I lose my ability to see?;
How many times will I dislocate my joints and partially dislocate my wrist;
Or will I be walking around slowly and have my knee cap randomly shift?;
Will my faulty collagen cause numerous joint issues and debilitating pain?;
Why does my opthmatologist say that my visual issues aren’t from my eyes – but from my brain?;
Will I be able to stand today and not cause every joint in my body to crack?;
Could I end up with an allergic reaction similar to one in a Mast Cell attack?;
What do my seizure-like episodes have is store for me today?;
When I convulse on the floor and people stare – it’s not some child’s play;
Will I end up with an injury or even have numerous “episodes” by this evening?;
Sometimes it looks like my lungs don’t work, I turn blue, and it feels like I’m not breathing;
Will I end up having one in public and being taken in an ambulance to the ER?;
Or will my aunt get me up into my wheelchair and take me to the car?;
Will I hear doctors say that there is nothing wrong and it’s all in my head?;
Will I be labeled as a hypochondriac or an attention seeker until I am dead?;
People don’t seem to realize that chronic illness can affect you in more than one way;
And it is often easier to hide behind a mask and pretend you’re okay;
Everyone seems to judge you because you don’t look sick on the outside;
But they need to not judge a book by its cover – I confide;
Not every disability is visible and not everyone with an invisible illness are lying;
But the more you put us down with your rude opinions – the more we want to stop trying;
Believe it or not – not everyone in a wheelchair can’t walk;
Just like not everyone who is deaf can’t talk;
Not everyone doing chemotherapy has cancer;
And not everyone with hypermobile joints is a ballet dancer;
Not everyone with chronic pain are in their older years;
What makes you think it’s okay to judge someone till they are in tears?;
People from all walks of life – both young and old – can have illnesses that are visible;
But what about those of us who’s chronic illnesses are invisible?;
Sometimes – when I get judgment from people – it’s empathy I seek;
So - before you say anything or judge someone – think before you speak

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Another dysautonomia day 😭

I'm at my wits end here. As a massage therapist I am the bread winner for myself, husband and 5 year old daughter. I only have one massage today instead of my usual 3-4.

About 2 hours ago I started experiencing shortness of breath. My O2 and pulse are fine, AS USUAL. I've been to the E.R. 9 times in the past month.

In 2 weeks I'm doing a stress test my cardiologist ordered. I need to schedule my brain MRI my primary ordered.

The propranolol really helps with HR and BP, but making myself breathe instead of it just happening naturally is really scary. Thanks a lot, long covid. Anyone else experience this breathing thing?

Thanks for listening. Much love to you.#Dysautonomia #Depression #Anxiety

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Creative outlet #ArtTherapy #Autism #EhlersDanlos #Dysautonomia #MentalHealth #SelfHealing #healingvibes

My cornucopia of diagnoses doesn’t seem near as daunting displayed all colorful and creative like this 🤣

What beautiful artwork have you all created recently?

25 reactions 8 comments

I'm new here!

Hi, my name is georgiarose73. I'm here because I feel like I am alone in my struggles with all my issues. It almost led to a divorce before my husband realized I was not faking. It took two years to get a disability and I had to retire early from teaching which I loved! I miss my friends, I miss activities I USED to be able to do, but most of all I miss the old me.

#MightyTogether #Anxiety #Depression #Migraine #Fibromyalgia #Dysautonomia #sjogren 'sSyndrome#PTSD

10 reactions 5 comments

# Hot Weather, EDS and Dysautonomia

#EhlersDanlosSyndrome nope, it’s not a good day to enjoy the outdoors, Heat Wave and Air Quality Alert, which means My butt’s staying inside the hospital room or at least I will enjoy the view from the window!

5 reactions 4 comments