Mast Cell Activation Disorder

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    Group Leader
    Chris LAmarca
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    @chrislynn1
    Making the Most of Life Last Week
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    Changed the name of the group

    Hello friends! You will notice I change the name of the group, even though the purpose of the group has not changed, I want to focus on the journey and not the destination.

    This summer, I really want to continue my outdoor adventures and have as much time as I can with the people I love. What are your summer goals?

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

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    Weluvmomma
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    @weluvmomma
    Last Week

    I’m new here!

    Hi, my name is Weluvmomma. I've been diagnosed with MCAS back in January, after a yr of labs and back n forth trips to my allergist office. however I suffer with chronic fatigue and chronic pain throughout the day. and a handful of antihistamines daily this is just insane. for 18 yrs I suffered from CHRONIC hives that were a head to toe. still waiting to hear from a GI specialist as I have more GI issues then I’d care to admit. most recently my doctor put me on cromolyn(before meals) but who can remember that before eating. food allergies are short, corn(this is in EVERYTHING even otc meds, I have to have my allerga compounded just cuz of corn byproducts), raspberries,kidney beans, hazelnut/ filbert, and oysters. the rest is a fork ton of environmental allergies. I live in the PNW we are the evergreen state for a reason and I’m allergic to most of the trees here . anyone else?

    #MightyTogether #Depression #Anxiety #ADHD

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    alligirl
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    @alligirl
    The Bendy Bunch Last Week

    New here and undiagnosed

    Hey everyone! I’m new here and I stumbled upon this app and group while researching (as I have been doing a lot of recently!) I have been to doctor after doctor throughout my life only for them to tell me everything is normal and nothing is wrong, or I just have anxiety or simply that they don’t know and give me some kind of off the cuff advise. From skin problems and back pain when I was 16 to chest pain and serious bowel/stomach cramps in my 20s and most recently I’ve had my hormones checked twice the last year and find myself at a rheumatologist only to be somewhat dismissed and I think as I go back today I am going to hear the same thing. Everything is normal. This last year or 2 I have been really having some what I would describe as flares or episodes. I feel fine for a while and then I’m just feeling crappy for days or weeks on end. A friend of mine mentioned I might have EDS and MCAS. Through further investigation i feel I may have POTS as well. And even more research brought up the possibility of Marfan syndrome. I have a ton of markers for these as far as symptoms go and physically as well as looking back on past experiences and even at my children(they have some features that caused me to look into marfans) anyhow I’ve been discouraged lately and often downplay to others how bad I’m feeling and how often I feel that way. I start to wonder if it is in my head but know deep down it’s not. I’m going to a new doctor in October who my friend suggested and says is knowledgeable in these areas so I really hope to find some things out. Just looking for support and advice in the meantime. Thanks for taking the time I know this is a long post! #Undiagnosed
    #EhlersDanlosSyndrome
    #MastCellActivationDisorder
    #PosturalOrthostaticTachycardiaSyndrome
    #marfans Syndrome

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    L star
     • 
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    @laurastar
    Last Week

    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

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    jody
     • 
    ·
    @jodychane
    May 26, 2023

    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

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    jody
     • 
    ·
    @jodychane
    May 26, 2023
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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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    jody
     • 
    ·
    @jodychane
    May 26, 2023
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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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    Group Leader
    Chris LAmarca
     • 
    ·
    @chrislynn1
    Multiple Health Challenges May 22, 2023
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    Group Leader
    Chris LAmarca
     • 
    ·
    @chrislynn1
    Making the Most of Life May 22, 2023
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    DancingRaven
     • 
    ·
    @dancingraven
    May 18, 2023
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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

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