Mast Cell Activation Disorder

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

Here’s a portion of a email I wrote to my husband. He is struggling to see me.
————-
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.

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

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

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.

#MightyTogether

Hi, my name is Susancl70.

#MightyTogether #MastCellActivationDisorder

I really want there to be something as easy as diet change to fix my symptoms but it doesn’t seem like the low histamine diet has really been proven to be helpful. I’m having a bad flare up right now. I just don’t want to make my life harder than it has to be by following a restrictive diet for no reason. I have identified a few food triggers over the years and I avoid those strictly.
I’m continually confused by cheese. I can’t seem to understand if I can have it or not. Another stumper is soy (soy milk, tofu, soybeans). The fact is I may never know what causes my flare ups. It’s just hard to accept the reality that I have no control in this.
I know this is not a very active thread but I hope we can breathe some life into it. I would love some support for MCAS.
Anyone tried this diet?

Hi, my name is IntersexEnbySeahorse. I've been diagnosed with Mast Cell Activation Syndrome , Post or static tachycardia syndrome, and hEDS….

#MightyTogether