Mast Cell Activation Disorder

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Metamorphosis: Embracing Change Through Chronic Illness

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.

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How “ The Trolley Problem” Relates To My Experience With Life Threatening Rare Disease

The “ Trolley Problem “ has been on my mind all day today …

It’s probably because , As I should have predicted yesterday’s infusion of 4mg of IV Copper ( instead of my usual 2mgs ) to treat my dangerously low copper levels that just won’t seem to rise .

Has not been my friend 🤢.

I’m one who hates to be still . But Ive spent all day in my bed sleeping or watching tv .

As I’ve been nauseous , felt like my throat and entire body has been attacked by sand gnats , I’ve had body aches beyond control , and exhaustion belief .

My nerdy little brain has been thinking over and over abb“ The Trolley problem “

If you don’t know what that is Wikipedia states that

“ The trolley problem is a series of thought experiments in ethicsand psychology, involving stylized ethical dilemmas of whether to sacrifice one person to save a larger number.”

I thought of how relates with some of the treatments I’ve had

With the big car being my future . Then current me would be tied to the tracks , completely and utterly being held against my will .

When I first started oral chemo ( for my connective tissue disease ). , my hair started falling out and my head rarely left the inside of a toilet .

My IVIG I need to stay alive due to my CVID has tried to kill me multiple times , and still tries to ,
( It causes anaphylactic reactions thanks to my Mast Cell Activation Syndrome )

And the reaction I’m having to copper on this higher dose is everything an IVIG reaction minus the part where my throat closes off ( thank goodness )

Often it feels like I’ve had to a sacrifice what I want my life to be , So that big train can drive through

Sometimes we have to sacrifice the comfort and convenience we CRAVE now ( often leaving us feeling like we got hit by a train )
So big beautiful things can “arrive “ to our future

And in my case , so I can have a future at all .

So here is to suffering , that leads us to a big beautiful someday

Keep going ❤️

#RareDisease #copperdeficency #Infusion #MastCellActivationDisorder #CommonVariableImmuneDeficiency #MixedConnectiveTissueDiseaseMCTD #IVIG

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Advice? Thoughts? Ideas?

Ello. Im fairly new here. I have had one of the roughest years of my life. Last February I had to stop working due to heaps of weird symptoms that have been taking me down. Its been difficult getting help due to living in an incredibly rural location, not being able to drive, no support system and drs not believing me. ( Really - they told my aunt they think its an emotional reaction to my mom passing away. Even though she passed a full year before my symptoms showed up. My mom had been given 5 years to live but lived 16/17 years - so it wasn't a shock either. )
I have a connective tissue disorder called ehlers-danlos- which I've handled fairly well up untill now. But something else is going on. I feel like I'm a car with a dashboard and all the lights are blinking.
For about a year - my lympnodes have been swollen and painful. However I didn't know until fairly recently that they were lympnodes- I called them ouchbumps or swollen squiggles haha.
I've asked my other groups and so far the consensus has been that yes eds can have some swollen lympnode problems - but it usually is one or a few - not all.
There are MANY other symptoms going on as well. Like I said - its been a long year.
I've finally got a rheumatologist appointment in a few weeks ( I got really lucky - there was a cancelation- originally it was supposed to be in September!)
I'm worried that it will get brushed off again as it has so many other times. Im worried that they will dismiss it as EDS and ill get steamrolled like I usually do.
I'm having a hard time keeping up hope.

Any advice on approaching that appointment?
Advice on how to get the lympnodes to chill out? ( Im on a bunch of meds atm including cromolyn and h1 antihistamine- but I don't think its mcas related? Nothing seems to be effecting it).
Many ppl have suggested it is lupus ( which does run on my dads side of the family).

Thank you for your time and consideration!

Below is one of the bumps on my neck - they are very hard to get pictures of. I think because of the eds its hard to see swelling? Idk I can feel it under the skin but pictures are hard!

#EhlersDanlosSyndrome #MastCellActivationDisorder #Lupus

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Back Pain to the Max

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.

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#Weird skin rashes and spots;

I have been "around the block" with a variety of stuff all my life. I am 75 with hEDS, POTS, dysautonomia, MCAS, CFS/myalgic encephalopathy/ SEID, and small fiber neuropathy.

As I age , the management and science has expanded. I feel lucky that there is so much more info. However, this non itchy, nonpainful, bright red flat pinpoint rash stumps me. It is on my lower aarms and lower legs. Is it an auto immune thing or what?


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My Story

The thing about Mast Cell Activation Syndrome (MCAS, a little-known chronic illness that affects the entire body), is that while it is believed to lie dormant in approximately 14-17% of the population, it typically requires a “trigger”, or major life event/physical trauma to “kick it into gear” and get those mast cells overreacting. For some people, this trigger might be a difficult pregnancy, a severe car accident, or a major surgery. For myself, it was a rather nasty bike crash in May of 2021 that triggered daily migraines, benign lump growth, approximately three months of daily suicidal thoughts, and other various maladies.

If my mother had not already been diagnosed with MCAS (after a major surgery and a decade of searching for answers and a diagnosis), I’m sure there would have been no way for us to link my bike crash with the intense mental illness I was experiencing. I might have gone on to treat my condition as symptoms of Post-Traumatic Stress Disorder (PTSD), perhaps adding new antidepressants or other meds, but I would not have recognized my issues as stemming from overactive mast cells.

Since that fateful May, my life has been spent in and out of hospital waiting rooms, waiting for results, emailing doctors and calling nurses, and paying medical bills. I’ve never hit my insurance deductibles so early in the year. From the time I first started suspecting that my struggles might be the result of MCAS, I’ve had approximately twenty vials of blood drawn, three rounds of testing ordered, two biopsies, and six expensive hours of talking with an MCAS specialist. I’ve dropped a couple thousand dollars (of my parents’ money) to visit said specialist in New York and pursue a diagnosis. After my first three-hour appointment, I was told that I “reek” of MCAS, and that once an official (laboratory evidence-based) diagnosis was achieved, there were many options for treatment, including a “perfect cocktail” of antihistamines and other MCAS-specific medications.

I remember being relieved. Chronic depression, nausea, and fatigue continued to plague me on a daily basis, but at least there was a plan in place. Every two weeks, I could try a different medication until I found the one that worked the best for me. It took months–years and even decades less than the vast majority of MCAS-havers–but eventually I was officially diagnosed with MCAS, though that was just the beginning of my health journey.

About halfway through my final semester of college and almost a full year after my bike crash, I had a severe flare-up of another chronic illness I didn’t know I had. The statistic representing American adults with one chronic illness (60%) is not that much higher than the statistic representing American adults with two or more chronic illnesses (40%). For five days, I was unable to get out of bed. I felt weirdly high, constantly on the verge of passing out, and utterly exhausted. My heart beat alarmingly fast at rest, and when my blood pressure dropped to 88 over 56, I decided to go to the emergency room. One panic attack and three normal lab results later, I was released at one in the morning.

None of the doctors I saw that week were able to give me any idea what might be wrong with me. It was only after consulting with my cousin who has, among other things, lupus, clustered migraines, Ehlers-Danlos syndrome, MCAS, and Postural Orthostatic Tachycardia Syndrome (POTS) that I was able to find some answers. It was POTS. Known anticlimactically as the standing-up-too-fast disease, I was surprised at the psychological element of distress I was experiencing during the flare. I was assured by my cousin and other POTS patients that this was typical. And so, I bought a pair of $70 compression leggings, found a way to work two tablespoons of salt into my daily diet, and started taking supplemental electrolyte pills. Standard POTS treatment. I ended my bed-bound spring break and prepared to finish senior year in whatever state of health I could manage.

Since then, I successfully graduated college and found a job where I can work from home (and often, from bed). I continue to break my monthly budget with the number of doctor’s appointments I attend per month, and even though I’ve found my “perfect cocktail” of antihistamines, I’m still adjusting my medication to counteract my anxiety, depression, and OCD. Some days, the feeling of being trapped in a body that hates me is so overwhelming that I come to hate my body in turn. But I try to remember that the things I often hate about my body are the things that make me slow down, appreciate the little things in life, and connect with you wonderful people. And for that I am endlessly grateful. <3 #PosturalOrthostaticTachycardiaSyndrome

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I'm new here!

Hi, my name is Renniehopping. I'm here because I care for my adult daughter who is disabled from hEDS, MCAS, POTS, and more.


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Does your illness(es) change with the seasons?

Spring has sprung! I know it can be difficult to feel excited like the majority of people when the weather changes. While most are welcoming the warmer temperatures it can be a trying time for those of us with chronic illnesses. For instance, the heat can oftentimes exacerbate symptoms. What are some of the tricks you employ to keep cool and stay safe? Remember to keep hydrated! #Spoonie #ChronicIllness #ChronicFatigue #ChronicFatigueSyndrome #MyalgicEncephalomyelitis #Fibromyalgia #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #Dysautonomia #MastCellActivationDisorder #MultipleChemicalSensitivity

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"I'm So Sorry You Have To Deal With That"

Not too long ago one of my doctors wanted to make an adjustment to the dosage of one of the meds I take for #PosturalOrthostaticTachycardiaSyndrome .

It went very poorly.

Anyway, I had to control my symptoms fairly publicly one day. I even sat out in the rain for a bit to help with self-regulation. I was barefoot, without a jacket, and it was maybe in the 40s, but my CNS did not care about facts at that moment.

So I ended up sharing about my chronic illness with a few new people after that.

After my follow-up w/ cardio, we determined that I'd be staying at my usual dosage. From there, I let myself get back up to maybe 75% baseline functioning and then basically put it out of mind. Since I was just returning to a prior dose, I figured the rest would come.

I saw one of the people who had recently found out about my diagnosis, and she asked for an update. It took me a second to figure out what she was talking about, having already filed it away in my mind, but I brought my brain up to speed to have the conversation.

I have different levels of routine answers about my medical issues depending on how much the person asking really cares to listen/ is actually asking.

I ended up explaining how POTS was actually one of a system of medical issues I have stemming from a genetic condition #EhlersDanlosSyndrome .

It was then that she said she was sorry I had to deal with things like that, and I genuinely had to sit back and think what that meant.

"Things Like That".

I then was probably more honest than I needed to be with her, and more honest than I usually am, with general intro conversation about my 'genetic stuff, but I was talking as I was processing... ' [Especially because I saw her tear up while I was saying it- whoops]

I told her I have no concept of what it is like not to be dealing with it. I don't know what it is like to not be in pain. I don't know what it would be like not to be thinking about when to take my next medication or what my water intake is. I don't know what it is like to go more than a week or two without seeing a doctor. I just have never had that room empty, and I can't comprehend what it would be like to have that space.

#ADHD #Asthma #ObsessiveCompulsiveDisorder #PTSD #Depression #MastCellActivationDisorder #Migraine #ChronicVestibularMigraine

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