May 15, 2025
Hi, my name is ShelbyN. I'm here because I was just diagnosed with HEDS and fibromyalgia after 20+ years. Most likely I also have MCAS but that appointment is a few months out.
#MightyTogether #Fibromyalgia #Anxiety #Depression #EatingDisorder
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Hi, my name is Spiritbapho. I'm here because
#MightyTogether #AutismSpectrumDisorder #ADHD #PTSD #EhlersDanlosSyndrome #PosturalHypotension #PosturalOrthostaticTachycardiaSyndrome #MastCellActivationDisorder
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Yesterday I was officially diagnosed with mast cell activation syndrome (MCAS) a disorder in which my mast cells produce histamine when there is no threat (allergy) identified in the body, causing allergic reactions for no reason. We’ve known for a while that I’ve had MCAS but it hadn’t been officially diagnosed until yesterday. I often have flair ups and have had to epi pen myself 3 times in the past 6 years. There’s no cure for MCAS but there are ways to manage symptoms. I feel lucky to be alive and grateful to live in a day and age where modern medicine exists. Just as I don’t let bipolar define who I am, I won’t let MCAS run my entire life. I will manage symptoms as they come up and will conquer this disorder. I will not let it defeat me. #MastCellActivationDisorder #Bipolar1 #MentalHealth #MightyTogether
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Does a diagnosis of MCAS make much difference? If there is no real treatment, only managing symptoms, is it worth the fight to get a diagnosis? I'm in Australia.
I spoke with my GP yesterday and suggested I might have MCAS as it is the only thing I can find to explain my anaphylaxis reaction to the fat content of soy. His first step was to send me for a blood test to check if I am Celiac. Given I don't react to wheat I can already tell him the answer to that. (The same doctor sent a friend for a blood test and then confirmed she wasn't post-menopausal after she went to see him about heavy periods 🙄🤦)
I have severe anxiety and agoraphobia so if a diagnosis is not going to make a difference I would rather continue on as I have been for the past 6-7 years and just avoid my triggers where possible, otherwise I think I need a new doctor.
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Hi, my name is Bagota. I'm here because
my daughter has POTS, we also suspect EDS and MCAS#MightyTogether
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“So what are your plans for the future “
My old councilor once asked me .
“ Hope I have one “ I responded with a witty chuckle .
He busted up laughing then said “ No really .. what are your plans for the future “.
I had to be honest and tell him I stopped planning for the future long ago .
Becuase of my illnesses in my eyes life had become an hour by hour , minute by minute situation .
Approach it with no plans , just a “fly by the seat of your pants “ situation. And hope you make it to the “next level . “
Sorrow filled his eyes as he told me .
“ The things you really really want . You have to plan for .
I want you to do one thing that will go towards your future “
And the thought of that terrified me .
( Yep I am THAT big of a commit-a - phobic )
But here I am 3 years later .
And Today I went to the bank and finally took that advice .
And it felt so good .
Most people in my life viewed this act as something super small
Heck it probably is
But it gave me a bit more hope in the big beautiful “ maybes” the future might bring
And in the season of life I am in . That little step meant everything
I challenge you to make one little act , one little plan for the future , and see just how good it feels ❤️ #MightyTogether #CommonVariableImmuneDeficiency #RareDisease #MentalHealth #Anxiety #Undiagnosed #autoimmune #MCAS #ChronicIllness #ChronicPain
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6 comments
“So what are your plans for the future “
My old councilor once asked me .
“ Hope I have one “ I responded with a witty chuckle .
He busted up laughing then said “ No really .. what are your plans for the future “.
I had to be honest and tell him I stopped planning for the future long ago .
Becuase of my illnesses in my eyes life had become an hour by hour , minute by minute situation .
Approach it with no plans , just a “fly by the seat of your pants “ situation. And hope you make it to the “next level . “
Sorrow filled his eyes as he told me .
“ The things you really really want . You have to plan for .
I want you to do one thing that will go towards your future “
And the thought of that terrified me .
( Yep I am THAT big of a commit-a - phobic )
But here I am 3 years later .
And Today I went to the bank and finally took that advice .
And it felt so good .
Most people in my life viewed this act as something super small
Heck it probably is
But it gave me a bit more hope in the big beautiful “ maybes” the future might bring
And in the season of life I am in . That little step meant everything
I challenge you to make one little act , one little plan for the future , and see just how good it feels ❤️ #MightyTogether #CommonVariableImmuneDeficiency #RareDisease #MentalHealth #Anxiety #Undiagnosed #autoimmune #MCAS #ChronicIllness #ChronicPain
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6 comments
Years ago when I was heavily dealing with some of “side effects “ of life threatening chronic illness
My councilor gave me probably the best advice I’ve ever head .
“ Live every day like your waiting for an exciting package from Amazon “
And explained to me that often the joy and excitement we get , is not really from the item itself . But it comes in the waiting , the planning and the prepping for something great to arrive.
( I think I can low key blame my shopping addiction on him 😂😉)
But with the chaos I know is coming
I’ve found myself
Re learning the importance of that statement
Though illness has turned me into a realist .
Most of the time being a realist is vastly overrated.
Sometimes you have to mentally plan that interior design room makeover
( that may take a year or more to actually get done )
Step by step plan the dream garden
( that your probably to sick to actually do )
Dream of moving to sea level ( to help your crap lungs ) to an equestrian community
and start from scratch
( You all live in this economy and have seen the housing market.. you know this is the biggest day dream of them all 😂)
But gotta dream of vacations your going to take , places your going to see , things your going to do .
Even if it’s just for the fact that , dreaming about a brighter tomorrow
Makes getting out of bed today a bit easier .
Sure there is a GIANT chance the things you dream of won’t happen .
But even the most harsh of realist , can’t deny that there is a chance that they might .
I say , believe in the good that’s to come ❤️
#smileon🐷 #ChronicPain #ChronicIllness #raredisease #hope #MightyTogether #pcos #CommonVariableImmuneDeficiency #autommunedisease #MastCellActivationDisorder #MightyTogether
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3 comments
Hi, my name is sophplus5. I'm here because I have EDS, POTS, MCAS, Lyme disease and have been in extreme constant pain for 2 1/2 years. Withdrew from high school because of the pain, nausea and dizziness. Finding support / friends would help the isolation
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