Mast Cell Activation Disorder

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    M I’m valid

    Does anyone else have people treat them as hypochondriacal now that they’ve uncovered their half dozen chronic illness diagnoses?
    Like all of a sudden, now that I’m getting treatment for the sickness I’ve always had, I’m a liar and a hypochondriac?
    #PosturalOrthostaticTachycardiaSyndrome
    #LymeDisease
    #Migraine
    #MastCellActivationDisorder
    #EhlersDanlosSyndrome
    #Gastroparesis
    #Autism
    #ADHDInGirls

    10 reactions 4 comments
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    Just saying hello

    Just wanted to introduce myself! I’m Jody, a fellow #Potsie I am 56 yo, however I feel so much older as I have a total of 15 dx chronic diseases. Unfortunately, a little more than 2 years ago, I was fainting just a little too much (lol… 🤣), as well as having "gray outs", and my wonderful doctor told me that I could no longer get behind the wheel of a car!! It’s really nice to have to depend on your 85 yo mom to drive you around (who we are not sure if she should/should not be driving distances & freeways) to doctor’s appointments, etc.
    #livinglifeinafishbowl #PosturalOrthostaticTachycardiaSyndrome #saltlick #Dysautonomia #SmallFiberNeuropathy #MastCellActivationDisorder #Gastroparesis #EhlersDanlosSyndrome #Subluxations #dislocations #Fibromyalgia #ChronicMigraines #ChronicNausea #ChronicDiarrhea #chronicconstipation #MyalgicEncephalomyelitisChronicFatigueSyndrome #Osteoarthritis #RheumatoidArthritis #Facetarthritis #ChronicPain #Depression #Lonliness #bored #icantpeople

    17 reactions 11 comments
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    I Just Want My People To Understand What My Everydays Are Like…

    I’m not new here, but this is my first time expressing myself. I was first Dx w/ Fibromyalgia in 2013, I didn’t let it define me! I was hit hard in 2018 with #Gastroparesis . A few months later, Hypermobile Ehlers Danlos Syndrome (although I knew I had #hypermobileehlers-DanlosSyndrome(hEDS), I just didn’t know it was a disease… I was a gymnast childhood - early HS). Then came one diagnosis after another. Whammo!!! #POTS , #MCAS , Small Fiber Neuropathy, etc,. So from 2018-Present. I have 15 confirmed diagnosed chronic diseases. I have not driven in a little over 2 yrs b/c of POTS & fainting, & it really sucks!!
    All of my local friends have gone. My college roommates (7) & I have a daily group chat going. Nobody (1 roommate does) ever checks in with me to see how I am. Everyday I’m completely #Fatigued . I have #ChronicPain everywhere!!! I’m #nauseous . I have #chronicdiarrhea & #chronicconstipation . I have #ChronicMigraines It hurts to walk. The rapid electric zaps from the #SFN is excruciatingly painful. My #RheumatoidArthritis & my #Osteoarthritis & now #Facetarthritis in my cervical spine has become so debilitating.

    I don’t want to be a downer, but I would friends/family just to text & say "Hi, I was just thinking about you, I hope today is better than yesterday… remember I always love you!" This way they don’t have to ask how I am doing, thereby don’t get an answer full of negativity, but at least I know that I’m still in their thoughts!

    I’m angry. I’m depressed. I’m sad. I’m lonely. I’m #housebound . I’m bored.

    Being #chronicallyill totally sucks! Yeah, I’m having another #pityparty

    26 reactions 10 comments
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    I Just Want My People To Understand What My Everydays Are Like…

    I’m not new here, but this is my first time expressing myself. I was first Dx w/ Fibromyalgia in 2013, I didn’t let it define me! I was hit hard in 2018 with #Gastroparesis . A few months later, Hypermobile Ehlers Danlos Syndrome (although I knew I had #hypermobileehlers-DanlosSyndrome(hEDS), I just didn’t know it was a disease… I was a gymnast childhood - early HS). Then came one diagnosis after another. Whammo!!! #POTS , #MCAS , Small Fiber Neuropathy, etc,. So from 2018-Present. I have 15 confirmed diagnosed chronic diseases. I have not driven in a little over 2 yrs b/c of POTS & fainting, & it really sucks!!
    All of my local friends have gone. My college roommates (7) & I have a daily group chat going. Nobody (1 roommate does) ever checks in with me to see how I am. Everyday I’m completely #Fatigued . I have #ChronicPain everywhere!!! I’m #nauseous . I have #chronicdiarrhea & #chronicconstipation . I have #ChronicMigraines It hurts to walk. The rapid electric zaps from the #SFN is excruciatingly painful. My #RheumatoidArthritis & my #Osteoarthritis & now #Facetarthritis in my cervical spine has become so debilitating.

    I don’t want to be a downer, but I would friends/family just to text & say "Hi, I was just thinking about you, I hope today is better than yesterday… remember I always love you!" This way they don’t have to ask how I am doing, thereby don’t get an answer full of negativity, but at least I know that I’m still in their thoughts!

    I’m angry. I’m depressed. I’m sad. I’m lonely. I’m #housebound . I’m bored.

    Being #chronicallyill totally sucks! Yeah, I’m having another #pityparty

    26 reactions 10 comments
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    DIAGNOSIS DAY #EhlersDanlosSyndrome #ChronicIllnessEDS #hypermobileehlers-DanlosSyndrome(hEDS)

    Not sure if that should say happy but today is one year since getting diagnosed with hEDS and I'm not sure how I'm supposed to feel about it . It has been a crazy year went from thinking everything was normal because that's what drs told me to finding out I have a defective body. Adding in meds that I never wanted to have to take, a surgery plus healing complications still 4 months out, discussion for another surgery, questioning everything I feel, did I always feel like this and ignore it or am I over thinking it. And extra diagnosis along the way. Answers are nice but sometimes I want to go back and pretend everything is OK. Sorry for the rant :) #EhlersDanlosSyndrome #Anxiety #POTS #allergy #HypermobileTypeEDS #MastCellActivationDisorder

    8 reactions 3 comments
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    New here!

    Hi! I’m new here. I downloaded the app about a year ago, but never used it. I am not a big fan of anything social media related or adjacent. Lol. But…I decided this would be good. I’m still trying to figure it out and how to use it. Haha. I’m sure I’ll get there…eventually.

    #PosturalOrthostaticTachycardiaSyndrome #AutonomicDysfunction #EhlersDanlosSyndrome #CommonVariableImmuneDeficiency #MastCellActivationDisorder #chronicmigraine #ADHD #longcovid #Asthma #SystemicLupusErythematosus #RheumatoidArthritis

    5 reactions 2 comments
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    Let’s engage our senses! Use your senses to describe your most relaxing spot.

    I can smell the green of the grass and trees.
    I can feel the last bit of the warm sun on my face and the slight breeze.
    I can taste the cool water on my lips.
    I can feel the twigs snap under my shoes.
    I can see the beauty of nature all around me.
    I can hear the birds chirping and honking.

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

    17 reactions 8 comments
    Post

    I'm new here!

    Hi, my name is Suniloberoi. I'm here because I am trying to learn about SIBO, FODMAP, MCAS and histamine intolerance to understand cause of the issues that I am observing. Thanks

    #MightyTogether