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Mast Cell Activation Disorder
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Mast Cell Activation Disorder
Mast Cell Activation Disorder
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Working with Chronic Illness
Hi friends!
I really need some sort of remote job to afford, ya know, general living costs and trying to be a healthy human being. I’ve tried to get reliable remote positions but I can’t find anything other than freelance work.
I have experience with marketing and AI, but I don’t have a ton of experience. If anyone has any recommendations, that would be amazing!!!
#chronicsyncope #MastCellActivationDisorder #EhlersDanlosSyndrome #AutonomicDysfunction #ComplexPosttraumaticStressDisorder #RheumatoidArthritis #BrainInjury
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I’m new here!
Hi, my name is hanniebananie.
I was just diagnosed with MCAS, POTS, and either EDS or Lipodema (we don’t know which one yet). I’ve been on a long journey with chronic syncope and I’m just now getting some answers! I would love to connect with people who relate and understand, or don’t! Let’s talk :)
#MightyTogether #PTSD #MastCellActivationDisorder #RheumatoidArthritis #PosturalOrthostaticTachycardiaSyndrome
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Masks off, accepting where I’m at with my illness #Journaling #Grief #MastCellActivationDisorder #Emotionalexhaustion
Here’s a portion of a email I wrote to my husband. He is struggling to see me.
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I’ve been grieving—quietly, deeply. Grieving my health, yes, but also the emotional weight I’ve been carrying for a long time. I’ve spent years hoping for more support from my family, from my marriage, even from myself. And I’ve realized that I’ve been overextending in relationships, pretending I’m okay when I’m not. That pretending has taken a toll.
I’m working hard to accept the reality of my illness—what it means for my body, my energy, my capacity.
Another part of what’s been incredibly hard is learning how to actually speak about how sick I am—how much pain I’m in, how exhausted I feel every single day. For most of my life, I didn’t have the language to explain it. I wasn’t taught to. I was taught—especially by my mom, who still refuses to accept her own illness—to push through, adapt, ignore it, survive minute to minute, day to day. I learned to turn inward and believe that I was the problem.
I am not a complainer and it's been hard for me put my pain into words without feeling like I'm complaining or repeating myself.
I’ve only ever lived in this body, so I didn’t know that what I experience isn’t normal. I didn’t realize that this kind of pain, fog, and fatigue is rare—not everyone is walking around like this. And now, I’m slowly waking up to the truth: I’ve been pushing beyond what I can handle for years. I’m not just tired—I’m in a body that is shutting down from being forced to function like nothing’s wrong.
The consequences of that pushing are showing up right now. I’m getting sicker. The toll it’s taken on my cognitive function, my ability to work, and even my self-perception is devastating to me—both intellectually and emotionally. I’m not okay. And I’m just beginning to understand how deep this goes.
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I'm new here!
Hi, my name is MOElovealways. I'm here because I live with Mast Cell Activation Disorder, Connective Tissue Disease/EDS, POTS, TMJ, chronic pain, complex headache disorder, neck/spinal instability and have been disabled since 2014. I have knocked at death's door several times and barely survived CACS surgery (celiac artery compression syndrome) and am just now able to start reaching out to other people who understand what I have been and continue to endure. I am terrified by everything happening in 2025 politics, public policies, healthcare, research, Medicaid, Medicare, and Social Security Disability programs.
#MightyTogether #Migraine #Anxiety #Depression #Fibromyalgia
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Hi! I’m new here.
Hi everyone!
I was recently officially diagnosed with MCAS (mast cell activation syndrome) after a rare reaction to a nerve block prior to my styloidectomy. The wildest part? You could literally see the nerve path light up on my neck (photo attached)! My neurosurgeon, Dr. Bolognese, said it was an extremely rare presentation.
Before diagnosis, I had been managing seasonal allergies with daily low-dose Pepcid AC and Xyzal, plus Benadryl as needed when hives flared up. Now that we know what’s going on, my PCP is collaborating with an allergist at the clinic to dial in a more appropriate treatment plan.
My MCAS seems to flare hard with weather changes — which has had me seriously considering a move to the Southwest for more environmental stability. But if I can manage symptoms effectively without uprooting my life, that would be amazing.
I’d love to hear from others — what’s helped you get symptoms under control? Is there a go-to protocol or routine that works for you?
Thanks in advance, and feel free to check my profile if you’re curious about the rest of my journey. I’m so glad to be in this community.
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Story of the Week: What do you want others to know about living with chronic pain?
Living with chronic pain affects every aspect of life, including sleep, physical activity, relationships, social interactions, work, focus, and mental health.
What has your experience with chronic pain been like? What do you wish others understood?
📖 Need some insight on the topic? Check out our story of the week here:
7 Things Healthy People Need to Know to Understand the 'Pain...
#CheckInWithMe #Fibromyalgia #ChronicPain #ChronicIllness #RareDisease #Spoonie #BrainFog #MentalHealth #Migraine #Anxiety #Depression #ChronicFatigue #MastCellActivationDisorder #Lupus #Cancer #RheumatoidArthritis #ComplexRegionalPainSyndrome #MultipleSclerosis #Endometriosis
7 Things Healthy People Need to Know to Understand the 'Pain Experience'
"Chronic pain changes everything in life, most entirely invisible to outsiders."
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I’m new here!
Hi, my name is GracefullyDisabled.
I was diagnosed with hEDS, POTS, and MCAS several years ago and was recently diagnosed with gastroparesis. I’m here to connect with others like me—share health tips and resources and engage in community.
#MightyTogether #ehlers-DanlosSyndrome #PosturalOrthostaticTachycardiaSyndrome #MastCellActivationDisorder #Gastroparesis #Anxiety
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I'm new here!
Hi, my name is RareFlycatcher192. I've been diagnosed with MCAS. I have had this for 12 years. I was pleasantly surprised to see the pictures and quotes on the subject.
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