so fun fact. if you sprain your ankle or something, tissue repair is supposed to go like this:

Inflammation

Then

Make more collagen (etc) and repair what's damaged

If you're perpetually inflamed because of immune system shenanigans, this process gets borked

#NEISvoid
Also, I know this is going to sound fake

But apparently the "inflammatory phase" after an injury lasts...a few days

A

Few

Days

(I guess if your immune system isn't perpetually in fight mode)

ncbi.nlm.nih.gov/books/NBK47044…
This is *probably* part of why there's a lot of overlap between MCAS and EDS

EDS causes all kinds of connective tissue injuries

Mast Cells are... theoretically supposed to help rebuild that connective tissue
Scientists who are looking into the overlap between EDS and MCAS are kind of dealing with a "which came first" scenario

(In medicine they call whatever came first "primary," and all the bonus complications "secondary")
The problem is, we really don't know if EDS is usually primary

And all the constant tissue repair kind of borks the old mast cells, leading to MCAS

Or if all the Inflammation from MCAS just means your connective tissue doesn't work right (causing EDS)

Plus...POTS 🫠
This is also kind of an oversimplification, because there's lots of ways that

mast cells (MCAS)

connective tissue (EDS)

the autonomic nervous system (POTS)

interact with each other, and problems with one can start a domino effect
Here's more details on some of the ways EDS, MCAS, and POTS are related

(Mast Attack is also a great resource for learning about this kind of information)
mastattack.org/2017/06/mastat…
Anyway, if you have any kind of autoimmune or autoinflammatory condition

Or if you're dealing with another source of Inflammation, like say an infection or a herpes flare or whatever

All the Inflammation can affect if and how your body repairs your connective tissue
Also, if you are... perpetually getting connective tissue injuries for some reason 😅

Each injury pushes your body back into that initial inflammatory response

Which can then exacerbate any immune system issues you're also dealing with

Love this for us 🙃
Our immune systems can affect... basically every other system in your body? Because pathogens like viruses can go so many places

This is good for like, surviving an infection

But not so good if your immune system is yelling "the sky is falling!" at your body all the time
Also it does not help if your autonomic nervous system joins the party and keeps setting itself to "fight mode"

The immune system is also...hard to turn off

This is good for like, surviving viruses

And also so pathogens don't just go directly for some "set immune system to sleep mode" receptor or whatever

But it sucks if your immune system wants to challenge everything to a duel
If you're dealing with immune weirdness or connective tissue problems or dysautonomia

Or some combo of the above

The list of things that can potentially send your body into a giant flare is... honestly overwhelming
And trying to keep your body from like, dueling your vital organs

Or dumping a bunch of chemical messengers that will set your nervous system to "fight mode"

Is like herding three cats in a trenchcoat

that keep biting each other

and demanding attention
I know when I'm really flaring, it's so frustrating how much of my limited energy goes to boring stuff like "staying hydrated" and "taking meds"

And it feels like I'm not "accomplishing" anything important

Well, this is just to say: trying to survive is actually hard work
I'm not the first person to say this, by any means. (If you have spoons, try reading Audre Lorde's Cancer Journals)

But resting is hard

And this capitalist system is not going to give you any praise or prizes for resting, or for doing self care
Anyway this started off as a brief explanation of how chronic inflammation can mess with your connective tissue

But uhhh apparently I went on a tangent about how your worth is not determined by being "productive"

And that rest is, actually, productive
Speaking of endless work taking care of my body, I should go hydrate

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More from @UntoNuggan

Jan 30
pros: had a good appointment with my GP where I explained all the weird things about my headaches that make me think it's not a migraine

cons: my GP agrees that whatever is going on probably doesn't have a diagnostic code or like, any well-researched treatments

🫠

#NEISvoid
I explained some of the things I've been doing that have been working

My understanding of current research around positional headaches and EDS/MCAS/POTS

And possibilities indicated by extremely hot off the press medical research
My GP was like, "well we're officially outside the bounds of things I'm familiar with, so I don't know enough to say whether you're onto something....but I also don't immediately disagree with anything you've mentioned"
Read 34 tweets
Jan 17
[medical diet]

So at this point in thinking about B5 and my microbiome, I feel both hopeful/excited and incredibly frustrated

Because it feels like I have tried all these complicated things to get some of my functioning back, and I don't know which ones are actually important
[medical diet]

And also I feel like I might have figured out the biological mechanism behind my own autonomic dysfunction

As well as my "I accidentally did too much, now my body is super angry, and I have crashed and lost functioning"

[medical diet]

Both of them seem to be tied to trying to reboot my microbiome

And what happens if I start to do it right, and then something goes horribly wrong

Autonomic dysfunction feels similar to refeeding syndrome
Read 41 tweets
Jan 17
[Medical diet, illness]

Ok so in my continuing "what the heck is up with my microbiome and B5?" thoughts

I decided to try and make a list of what has worked for me and what hasn't, and try to figure out some kind of way to reproduce it
[medical diet, illness, death, food insecurity]

This is partly because I want to try to help other people

But also because when I spoke to a nutritionist knowledgeable about MCAS about how to actually feed myself the next time my body just...stops digesting everything...
[medical diet, illness, death, food insecurity]

Her recommendation was to contact a personal chef now (lol?)

And tell them my dietary restrictions, so that if/when I get sick they can cook for me

But I know that if I get this sick again, that...is not a thing 🙃
Read 23 tweets
Jan 17
[illness, food, trauma]

This next section of my ongoing B5 and Microbiome thread is really about...

Things clearly happening to my body that have been really confusing and frustrating

I want to just include some caveats first
[illness, food, trauma]

I don't know if this is happening for other people, or for how many other people

I'm Autistic and I've had the experience of "surely everyone has this exact physical experience...wait just me?....oh not just me....but not everyone"
[illness, food, trauma]

I haven't even really been able to articulate this experience for a long time.

I knew that I was really struggling, and i tried a lot of things.

Some of them seemed to help, some didn't, and sometimes it would seem to randomly change.
Read 61 tweets
Jan 16
Ok today I'm going to try to share most of what I talked about yesterday

But make it more brain fog friendly

Overall topic: B5, our microbiomes, and MCAS

🧵
Probably going to take energy breaks myself

And sorry, I really can't rush to the "what might help?" part

Because pacing

ICYMI, here's part 1 of the low 🥄 version

Ok: imagine you are sharing a house with someone

It's their house, and they let you live their mostly for free

All they ask is that you help out with chores sometimes

You're both good at different things, so usually this works really well
Read 26 tweets
Jan 15
[food intolerances]

Starting a new 🧵 on my B5 deficiency, microbiome, and post-viral illness hypothesis

This one deals a lot more specifically with food intolerances and difficulty eating, just PSA
[food science]

We last left off here, with basically our microbiomes yelling for food

And a bunch of people asking me, "can't we just give them B5?"

[food intolerances]

I had this question, too

And I couldn't figure it out until I realized that I was, once again,

Forgetting that we have a symbiotic relationship with our microbiomes
Read 26 tweets

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