Autonomic Dysfunction

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    MCAS and Dysautonomia

    My daughter has dysautonomia, Raynauds, GERD, autism and more. She shows symptoms of MCAS, but no anaphylaxis or severe reactions. She has flushing, skin rashes to basically everything her skin touches, and itchiness. Could this be MCAS? #POTS #MastCellActivationDisorder #Dysautonomia #AutonomicDysfunction

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    Compression Socks!!!!

    Compression socks and leggings are great when you’re going to be standing for a while. It’s best to get ones with 30-40 mmHg (the higher the number the tighter they will be, meaning more support) #POTS #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #LivingWithPOTS #potslifehacks #ChronicIlless #dizzy #Lifehacks

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    POTS Life Hack!

    When you’re feeling dizzy, get a flavored salt tablet and place it under your tongue. If you are nauseous, you don’t have to taste it, but your body will still absorb it. Works great! #POTS #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #LivingWithPOTS #POTS #POTS

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    My Friend the Floor

    Sometimes I say I don’t need people to catch me, because I am friends with the floor. The floor catches me sometimes and laughs at/with me sometimes and sometimes lands a well-meaning punch too hard. I have to be patient with this friend who often shows up unannounced, thinking to surprise me and it will be great fun. When I’m writhing there, if someone is in the room, I know they cannot contain my pain. It hurts me to see them watch me there - someone they love’s body trying to turn itself inside out. They plead, beg and bribe the gods for a way that they can help. There’s not. I dance with the edge of knowing what I can control; where is my power and where isn’t it? But most often able people have not fought this war of attrition, and are not prepared for the blow to the gut knocking all the air from their hearts. Seeing them powerless and unaccustomed to this pain adds the hurt of another too and it weighs so much. But the floor, for all its flaws, is quiet after the initial impact. I scream and it listens.
    #fall
    #EDS
    #AutonomicDysfunction
    #Dysautonomia
    #HEDS
    #PosturalOrthostaticTachycardiaSyndrome
    #LivingWithPOTS
    #MastCellActivationDisorder

    10 reactions 3 comments
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    Guess you can call me an athlete?

    I'm back from holiday with my boyfriend's family. In attempt to fit in, I joined them for a 600m forest walk and ended up with chondromalacia, or as you may know it "runner's knee". It's horribly hilarious how weak my body has become.
    #AutonomicDysfunction #Undiagnosed

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    “You might not know where you are, but the forest knows, the raven knows, the moss knows”

    Hello everyone,
    I have delayed posting an introduction, because I am still in the process of getting my full diagnoses, but I decided that after over 2 years of hiding, it is time to let people see me.

    I got sick with a virus in March of 2020 while working in the hospital as a registered nurse. This picture was taken only a few days before I got sick and captures what I thought was most important to me - movement. When asked what I could never live without, I would respond with, “sunshine, movement, connection, laughter, nature and curiosity”. Over the past couple of years, I have lost all of those things, besides curiosity and laughter.

    I have spent the last half of a year in a dark room, and have been completely bedridden for months. I watched myself get chewed up and spit out by my own profession, as many others have been. I was gaslighted, denied disability and my physical health declined in the absence of medical care. I developed worsening Parkinson-like symptoms, it became hard to speak, chew and my voice changed to a hoarse squeak. I do not know if I have multiple system atrophy, but I have frighteningly been a step ahead of my doctors by treating myself for dysautonomia months before a diagnosis.

    I can’t go outside or open my windows during the day to worship the sun, but I am strengthening my connection to the moon 🌚 in its absence.

    When I close my eyes, I can still feel the soft breeze of the wind blowing through my hair, the crunch of rocks beneath my feet, the sound of a stream, the smell of flowers and the feeling of lightness in my soul as the sun envelopes me. I am far from the mountains, but I can still feel myself in them. I do not know if I will ever get them back, but I am so grateful that I have been able to stand in front of them and feel so grand and yet so small.

    I feel the ache in my chest for all of you that have been treated poorly by our medical system that was not created to help those with chronic illnesses, multisystem problems and multiple diagnoses. I feel the ache in my chest for all of you that we’re not believed by your family, friends or doctors. I feel the ache of not reaching out for help, because in the absence of tests, I could no longer handle the pain of people not believing me. I went from people saying “you don’t look sick” to my doctors saying they aren’t comfortable treating me, because my problems are too complex and I need a full team.

    I started my career as a nurse in the Neuro ICU. I saw incredible miracles and incredible suffering. I helped people live and I helped people die. I saw some that were stuck somewhere in between. I find it ironic that my worst fear was losing control of my body and mind, and now here I am facing my worst fears and laughing often, because the universe really does have a sense of humor.

    Over the past year, I have learned so much about myself and the depth and beauty of the chronic illness community. I have experienced profound healing of spirit, but that healing has not extended to my body. Sometimes I am afraid, but I have found comfort in my curiosity for the unknown. I told one of my friends months before I declined that I felt as if I were either on a path to healing myself in order to help others or I may be preparing to die. The unknown is always difficult and I am trying each day to surrender.

    I recently read a story by my favorite poet Sez Kristensen and found great comfort in her beautiful words. I do not know where I am going, but “the forest knows, the raven knows, the moss knows”.

    Thank you all for sharing your beauty, vulnerability and strength. We are not alone.

    #MightyTogether #AutonomicDysfunction #Dysautonomia #hashimotos #AutoimmuneDisease

    53 reactions 8 comments
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    What type of specialist do you wish was on your medical team?

    Being chronically ill definitely comes with its own set of complications, and we wish there was access to every type of specialist out there for all of the medical needs we have as complex patients. But realistically, not every single geographic location or insurance plan makes that feasible.

    If you had it your way, what type of specialist do you wish you had? What would make that specialist helpful to you?

    P.S. Check out Jeannette Reed’s new Mighty article about this topic: themighty.com/topic/cancer/therapist-cancer-specialist-team-...

    #ChronicPain #ChronicIllness #MentalHealth #Disability #Caregiving #RareDisease #Migraine #Stroke #CardiovascularDisease #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #Spoonie #Lupus #Endometriosis #Hospital #Cancer #Anxiety #PTSD #CheckInWithMe

    43 reactions 17 comments
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    I feel good today!

    I’m in a good mood today! This morning while at the pharmacy collecting my painkillers, I did my good deed for the day - a man was trying to buy some cough syrup for his partner, who has a chest infection, but he didn’t have enough. I paid for it myself and refused to let him give me what money he had. Instead, I said he should spend it on her favourite chocolate.

    I’ve had a lovely relaxing bath, which always exhausts me but I feel alright so far.

    AND, I’ve made a nice start on the second chapter of what I hope to one day be my debut novel. 1,554 words so far today!

    Now I’m about to sit down and have some peanut butter on toast. Lovely-jubbly!

    #ChronicHealthCondition #ChronicPain #POTS #PosturalOrthostaticTachycardiaSyndrome #AutonomicDysfunction #Dysautonomia #EDS #EhlersDanlosSyndrome #NAFLD #Diabetes #InterstitialCystitis #Migraines #Depression #BPD #Feelinggood #beingpositive

    33 reactions 6 comments
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    What accessibility modifications have you made in your house to accommodate your chronic illness?

    Living with a chronic illness can mean making changes to the environment around you to help better fit your needs, and that's 100% OK.

    Have you made any modifications in your home to accommodate your chronic illness? How did those modifications help? Were there any pros or cons?

    P.S. Need a relevant Mighty read? Check out this insightful new Mighty article by Tierra Drollinger themighty.com/topic/disability/walk-in-bathtub-chronic-pain-...

    #ChronicPain #ChronicIllness #MentalHealth #Disability #Caregiving #RareDisease #Migraine #Stroke #CardiovascularDisease #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #Spoonie #Lupus #Endometriosis #Hospital #Cancer #Anxiety #PTSD #CheckInWithMe

    15 reactions 14 comments
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    The Incandescent Light Bulb Ban Harms Many

    I have photophobia and over 10 years dealing with it, I have found incandescent bulbs are the only light I can tolerate for long periods. This year, the US president, Joe Biden has pushed forward on a ban of all incandescent light bulbs in an effort to support reductions in carbon emissions. I am terrified of this because it means I will never be comfortable in my own home anymore. I cannot tolerate the greener options available (fluorescent and LED) and being around these lights cause me significant pain and mental distress to the point where I become non-functional.

    Does anyone know where I can start to get the needs of people with photophobia and other visual sensitivities heard on this issue? I was thinking about contacting an optometry group, a news station, The American Foundation for the Blind, The ADA, writing a letter to local state reps, even the president.

    There isn't really a group specifically for photophobia and light sensitivity and our needs often go overlooked because eye problems that require brighter lighting are more common.

    Also I don't have all the illnesses I hashtagged, I just wanted to bring other people with conditions that can cause light sensitivity into the conversation.

    #Photophobia #EhlersDanlosSyndrome #Autism #Migraine #ChronicMigraineSyndrome #HemiplegicMigraine #ChronicVestibularMigraine #Dysautonomia #AutonomicDysfunction #Meningitis #BrainInjury

    18 reactions 10 comments