Mast Cell Activation Disorder

Hi, my name is UpliftingDeer3522. I'm here because

#MightyTogether #AutismSpectrumDisorder #EhlersDanlosSyndrome #ChronicPain #MastCellActivationDisorder

Lately I’ve been being hit hard again with waves of grief. They come and go, and often are interspersed with severe depression.

It’s been almost a year since I was diagnosed with hypermobile Ehlers Danlos Syndrome. It’s been a year and a half since I initially decided to focus on improving my physical health which, ironically enough, has led to a snowball effect of diagnoses and a decline in my health as well.

I’m in the beginning stages of being evaluated for Mast Cell Activation Syndrome also. I just started double doses of Zyrtec and Pepcid to see if that helped with my chronic pain and constant state of flaring. Shockingly, it has helped, which has been amazing. Next step is to get assessed by an allergist or immunologist and probably two more medications if I do have MCAS.

With all of the stress associated with chronic illness, my eating disorder thoughts have cropped back up too. Hard to believe I’ve been living with anorexia (currently in remission from ED behaviors but the thoughts still pop in from time to time) for 20 years. Twenty years. That blows my mind.

It’s just a lot. I don’t have answers right now or anything super positive or optimistic to say. I’m just very tired. Managing my health is a full time job. I have multiple appointments per week. I’m on a raft of medication. I need to find a therapist who is comfortable & familiar with chronic illness/grief but I haven’t had the time or the spoons yet to do that. It’s on my to-do list though.

It’s a lot. I’m here, and I’m safe, but I’m not okay. I will be, but I am not right now.

was listening to a podcast this morning 🎧and they mentioned something along the lines of (this is totally reworded as i already forget) "what is everything right now is okay?" or "what if right now you're okay and for this moment, everything is okay?" ☁️i found this to be super comforting. i know it can sound a little woo woo and like logical mind comes and says "it's not though" or "so many things are not figured out or are not okay right now" or "you have so many things to do that are stressful!" but what about just like for the moment - cant everything maybe be okay? ☁️meditation hasnt been my calling - and being in my body in that sense, as sometimes being "in my body" makes me very aware of my fast heart beat or exhaustion or *too* focused on my breathing so i start feeling like i can't breathe (haha) -- or even triggers that air hunger sensation because with dysautonomia, breathing isn't always so easy to regulate! but for me, painting, doodling, drawing - all of these are my form of meditation and taking mind/body breaks. ☁️☁️this was a big circle i promise it relates! i think that it can be kind of calming and meditative to just think "It's okay right now." a this teensy tiny moment in time. or this big moment in time - whichever resonates. and maybe when hard things come, "i'll figure this out" or "i'm okay for now, i'll figure out tomorrow when it's tomorrow" and even when not feeling okay, maybe just telling your body that it's safe - it is okay, and you are there rooting for it? ☁️☁️just pondering - would love to know what you think about this sort of focus on the now, but really just reassuring yourself that "you got this!" ? and also holding space for the moments when it's not okay right now, and when this isnt what you need in the moment to support yourself. i think there's a time & place & moment for anything and everything - so do whatever brings you the most peace, comfort, or strength ☁️🌵✨

#Dysautonomia #ChronicFatigue #encouragement #MastCellActivationDisorder #Spoonie #Hope

Hi, my name is chronicridiculous. I have POTS, CEBV, and MCAS. I’m looking for community and thought I’d check out The Mighty 😃

#MightyTogether

Hi, my name is Ljharrison91. I'm here because

#MightyTogether #Fibromyalgia #Bipolar2Disorder #Migraine #EatingDisorder #AnorexiaNervosa #BulimiaNervosa #OrthorexiaNervosa #OCD #Asthma #PTSD #ComplexPTSD #GastroesophagealRefluxDisease #IrritableBowelSyndromeIBS #Gastroparesis #EhlersDanlosSyndrome #MastCellActivationDisorder #PosturalOrthostaticTachycardiaSyndrome #Hypoglycemia #MajorDepressiveDisorder #SocialAnxiety #GeneralizedAnxietyDisorder #AutismSpectrumDisorder #ADHD #Alpha1AntitrypsinDeficiency #ChronicPain #ChronicIllness #RestlessLegsSyndrome #NeuropathyHereditary #TemporomandibularJointDisorders #Bursitis #OccipitalNeuralgia #TrigeminalNeuralgia #ChiariMalformation #Dystonia

In a world where we often believe our personalities are fixed, chronic illness becomes an unexpected catalyst for transformation. Before my first diagnosis, I was the embodiment of vitality – the life of the party, a nocturnal soul working multiple jobs, and relishing in the carefree indulgences of life.

Then came the diagnoses: Postural Orthostatic Tachycardia Syndrome (POTS), MCAS, Raynaud’s disease, Meniere’s disease – a cascade that reshaped not only my health but also the core of who I am.

1. Becoming an Introverted Health Enthusiast:
The vibrant extrovert turned inward. Friday nights that once resonated with laughter in social settings now find solace in the calm of my home. Health consciousness replaces late-night culinary adventures, steering me towards the mindfulness of the keto diet, meditation, and yoga to find serenity.

2. The Evolution of “Fun”:
The reveler who once embraced the night now finds joy in low-key moments – a quiet evening outdoors or tending to a garden. The definition of “fun” transforms, teaching me that joy can be found in subtle, gentle experiences.

3. Redefined Career Significance:
The question “What do you do?” loses its defining power. I discover that my career does not dictate my identity but is merely an aspect of what I do. The fluidity of life becomes evident, encouraging me to listen to my body and embrace uncertainty.

4. Adapting to the Unpredictable:
Planning gives way to going with the flow. #ChronicIllness teaches me the fragility of certainty, urging me to appreciate the present and cherish the flexibility that each day brings. Learning to be content with the ebb and flow becomes a cornerstone of resilience.

5. Reassessing Values:
The pursuit of wealth pales in comparison to the importance of health. The profound realization that money does not define well-being becomes a guiding principle, emphasizing the invaluable nature of good health.

In the crucible of chronic illness, both positive and negative aspects emerge. Yet, as the dust settles, adaptation and understanding become the cornerstones of self-discovery. The metamorphosis is not without its challenges, but in navigating these changes, one learns to uncover a resilient and authentic self.

Hi. I have a slew of health issues for 30+ years now, including Crohn’s, epilepsy, endometriosis, fibromyalgia, migraines, history of TIA strokes, history of reversible cerebral vasoconstriction syndrome, POTS, along with a new, undiagnosed auto immune disease that they cannot figure out yet.

Recently, I have had a series of bulging discs occur in my spine (currently at 6 with 4 compressed nerves) that they have marked as degenerative disc disease. Upon my neurosurgeon inspecting the MRIs of my spine, he said that it is autoimmune related, degenerative in nature, but that he has no idea what it is, cannot fix or help it, cannot operate on it, and cannot stop the pain.

At this point, the pain is so intense that even with an opioid patch, Norco, and a muscle relaxer, I am still shaking in pain. Does anyone else have anything of this nature? Does anyone have any idea what this might be? I know that my doctor is currently toying with the idea of Stills Disease One of my unknown diseases could be as well as the possibility of mast cell activation syndrome, being present.

Any help is much appreciated! Thank you so much.