Mast Cell Activation Disorder

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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

    1 reaction 1 comment
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    I’m new here!

    Hi, my name is Fireflycatcher. I'm here because I’m being worked up for chronic pain since having a flare with Long-COVID. I have symptoms of dysautonomia/POTS, pericarditis, myocarditis, MCAS and Ehlers-Danlos syndrome. I’ve been diagnosed X 15 years with Rgeunatoid Arthritis and Fibromyalgia.

    #MightyTogether #Anxiety #Depression #Migraine #Fibromyalgia #PTSD #ADHD #RheumatoidArthritis #ehlers-DanlosSyndrome

    4 reactions 3 comments
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    Electrolytes Easy for GI symptoms

    Does anyone have any suggestions on electrolytes that are easy to digest or good for digestion issues? I have POTS and Mast Cell Activation Syndrome and some pretty severe GI problems currently. They stopped making the only flavor of Body Armor that I could drink without reacting. Maybe people with #IrritableBowelSyndromeIBS #InflammatoryBowelDiseaseIBD #CrohnsDisease #UlcerativeColitis #Gastroparesis have some things that have worked for them?

    #LymeDisease #PosturalOrthostaticTachycardiaSyndrome #MastCellActivationDisorder #MastCellDisease #Migraine #Depression #Anxiety #Autism

    9 reactions 4 comments
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    Making progress!

    Yesterday was a good day, I had a lovely visit with my friend and wife. I did 15 minutes of stretches, ate a bit more and sat by the window. I then had amazing conversations with several doctors and other staff members. Everyone is working so hard to figure me out. They are not only working together, they are also really listening to me, and treating me with so much respect. I don’t feel rushed or disbelieved or misunderstood. The doctors and staff here actually understand all of my complications and if they don’t, they are not scared to say that they don’t and ask for help from other doctors or medical staff. There are few people trained to understand mitochondrial dysfunction, and I am incredibly fortunate to have my doctor in charge be one of those few people. 

    I am getting better every day and have so much hope. A few weeks ago I never thought there was a chance I would see Christmas, now, I am dreaming of seeing all my people, sitting by the river, going to the zoo, roasting a marshmallow over a fire, and all the other things I am excited to do.

    When I made the decision to come off of all of my medication’s and go for a reset, I knew that the chances were incredibly low that it would work. I also knew I had no other choice, my body was shutting down. It was nearly done when I got here. I did not think that I would make it; those who saw me in the weeks before I was hospitalized thought the same. That picture of me in bed I posted last week was taken by my wife because she was pretty sure it would be the last one ever taken of me. When it was taken I was at the point that I would randomly stop breathing, I couldn’t eat or drink, I couldn’t move on my own, my heart was struggling to beat, I was hallucinating and vomiting non-stop. But my people and my body were too stubborn to give up. So here I am; I’m not better, I will never have “good” health, I will always be disabled, I will not live as long as I would like, and there will always be pain and struggle. But, even more important is that there will be love, joy, laughter, adventure and life! Life is always more good than bad, bring on those silver linings!

    Today is a good day and they will keep getting better. There will be set backs and it is going to be very hard work, but I have never been scared of hard work.

    #Abunchofrarediseases #AddisonsDisease #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome
    #PTSD #FunctionalNeurologicalDisorder #Migraine #Asthma #MastCellActivationDisorder #CeliacDisease #MitochondrialDisease #Trauma #RaynaudsDisease #MentalHealth #Depression #Anxiety #ChronicPain #ChronicIllness #Disability #DistractMe #dying

    48 reactions 25 comments
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    # itchy eyes

    #EhlersDanlosSyndrome # Help me please my fellow Zebras, my eyes have been itching a lot lately and I can’t figure out what is going on. Could it be a MCAS thing or something that is just a EDS thing?

    6 reactions 8 comments
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    I'm new here!

    Hi, my name is Cadecaleb2. I'm here because I suffer from Ehlers Danlos , fibromyalgia , depression, anxiety, dysautonomia , POTS and MCAS symptoms. I have chronic pain and chronic fatigue syndrome and Spondylothesis. I just turned 50 and everything has been exasperated with my age. I have had hypermobile Ehlers Danlos my whole life yet I can’t find anyone in central Texas that specializes or knows anything about it. I’m exhausted and weary.

    #MightyTogether #Anxiety #Depression #Fibromyalgia #PTSD #OCD #Grief

    10 reactions 7 comments
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    How has God used you lately?

    I teach two year old at church. I have a port and one of them saw it and asked me what it was. I explained it to them as best as I could for a two year old. They said “Well God can use anything to teach others about Him. I’ll pray for you.” And sure enough days later I was able to make a connection between my health and God to someone I know has been reselling with the thought of God. How has God used you lately? #god #christ #POTS #EDS #MastCellActivationDisorder #ChronicIlless

    9 reactions 2 comments
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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