#Mast Cell Activation

[chronicallydragons]

anyone else ever wish they could lie down harder? Like, I'm already horizontal, but I need more horizontal. I need to be absorbed by the floor. I think that would fix me

[thebibliosphere]

I had a severe mast cell reaction to something last night for the first time in the longest time* and I can honestly say, hand on heart, I have no idea how I lived like that 24/7 for years.

I have no idea how I dealt with that nightly as a child, only to be yelled at and told to stop attention seeking, while last night my partner held me while I shook and prepared to stick me with an epi pen.

Thankfully he didn’t have to. Thankfully my airways cleared after my body purged itself of everything I’d eaten yesterday** and my heart rate began to climb down. But Jesus Christ, I am wrecked this morning.

* no idea why, only thing I can think of is hormones + sugar which can sometimes raise histamine levels

** everyone thinks anaphylactic reactions start with visible swelling and airway constriction, but for me it’s always been the much slower reaction of severe gastric symptoms which progresses to rapid elevated heartbeat, followed by agonizing acid reflux that burns through my whole chest and then if it doesn’t stop, my airways start to close while I simultaneously start to “fall asleep” (that’s the shock.)

Very rarely do I get visible swelling or hives unless whatever triggered the reaction was from skin contact or injected into my veins. So, just so you know, anaphylaxis doesn’t always look the way it does in the movies. I tell you this only in case it saves a life one day.

[thelastwhimzy]

i really wish that ehlers-danlos syndrome wasn't basically just thought of as the "bendy" disorder. firstly, there are more than 13 types of eds, and they all have varying relations to and degrees of hypermobility. secondly, eds are a collection of congenital connective tissue disorders - connective tissue makes up a vast majority of your body and, because of this, eds, hsd, and other congenital connective tissue disorders like loey-dietz, marfans, stickler syndrome, and osteogenesis imperfecta are multi systemic.

having eds or another connective tissue disorder is SO much more than just some flexibility and it's especially frustrated that they're often thought of solely in relation to that one aspect of them because it leads a lot of people down the path of misdiagnosis.

as an advocate and educator regarding ctds and especially eds, i have spoken to SO many people who simply wrote the possibility of them having a ctd like ehlers-danlos off simply because they aren't flexible. it's such a dangerous misconception and really frustrating to see especially given the fact that the muscles of hypermobile people often overcompensate to make up for joint laxity, which can actually lead to a lack of flexibility/high tone/spasticity

so yeah, tl;dr: if you have a bunch of multisystemic symptoms that seem largely unconnected, look into connective tissue disorders. they're much more common than people think, frequently go under the radar, and can really wreck havoc on your body - ESPECIALLY when you aren't aware that you have one

[98lindsey]

Having a chronic illness that isn’t deadly doesn’t take your life. But it does take your life. 🫤

[3liza]

maybe any doctor ever should know about this. this psoriasis activity seems to be caused by a thing propranolol does where it gets through cell membranes in places it's not supposed to be (like your skin), experiences a positive charge from being acidified, and becoems too fat to get back out through the same cell membrane, thereby getting stuck and fucking up cell turnover in a sort of low grade, systemic garbage buildup operation. also causes telogen effluvia which causes balding, and it can also cause nail warping/cracking/deformation. fyi

[kirby-the-gorb]

a couple people coincidentally reblogged my rare disease day post from [last year] so. here's how that's been going. (some of this is repeat info if you click the link)

I have mast cell activation syndrome (or MCAS), an immune disorder in which my signaling cells are way too jumpy and can trigger all kinds of symptoms (up to and including anaphylaxis) in response to seemingly harmless stimuli. this is distinct from allergies as whether or not I react to a trigger can change from day to day based on how many other triggers are present, and the chemical mediators released cover a broader spectrum than just the IgE release in a classical allergic reaction. plus oftentimes symptoms are a mix of episodic and chronic, rather than being acute episodes like allergies.

triggers can be commonly understood things like certain food ingredients or scent chemicals, but can also include things like hormone fluctuations, physical or mental exertion, and the sun. I have reacted to ginger, laundry detergent, and a natural gas furnace, for example. I also do a lot worse in summer because it is both sunny and warm, and I always have to be very careful how much energy I use up or I might trigger anaphylaxis.

it's common for people with MCAS to have some level of symptoms all their life, that go unnoticed or dismissed until some precipitating event causes a substantial downturn in their condition. for me it was mono, but other infections (especially covid) and significant stressful events have also been anecdotally reported to precipitate downturns if I recall correctly, or simply being uncontrolled enough for long enough can also snowball.

diagnostic criteria for MCAS were first proposed in 2010, so the true rarity is still very up in the air. (personally I believe a lot of common wastebin diagnoses (ibd, fibro, cfs/me, etc) should be scrutinized very carefully as potential "specialty silos" of MCAS, especially given how often they tend to travel together.)

firstline treatments for MCAS include cheap medications available over the counter like loratadine, aspirin, and famotidine. my condition has become severe enough that I'm currently on third-line treatment (omalizumab injections), which does finally seem to be getting me somewhere. (this is, of course, in addition to still taking all of the first- and second-line treatments. I take 24 units of 13 medications in a given day, it's a lot to keep track of. to the point where I'm not actually sure I've counted it correctly :v then there's my monthly injections and my emergency medications on top of that.)

(those injections btw? can cost thousands of dollars even with insurance. thankfully I'm able to use the company's assistance program, so I don't pay anything out of pocket. for that one.)

being sick is never fun, but if you have a disease perceived as rare it introduces a ton of new complications. (which get even more complicated when the disease is legit super rare!) it took me a long time to figure out what was wrong with me, and I had to do it almost entirely by myself, because doctors simply don't have the knowledge. they're not taught to look for it and there's no simple reliable test. but by yammering about it, it might make someone else's slog a tiny bit shorter <3

[ehlersdanlosdarling]

[talkethtothehandeth]

If you wear strong fragrances in public I hate you ♥️

[thatchronicfeeling]

Medical Person: What are your symptoms? Disabled/Chronically Ill Person: This is a trap.

[dearchronicme]

So you were diagnosed! What should you have in your go bag? A master list

Electrolytes: I cannnot stress the importance of this. Even if you don’t have POTS or dysautonomia, it’s always good to replenish your levels of sodium. Liquid IV is affordable, but also has added sugars. I use LMNT, and Nuun Mostly, all of these should be available at Target or your closest pharmacy!

Medical Card/ID: When I experience an episode, I often lose the ability to hear and speak. Having a card that has that information can be extremely helpful, especially if you are about to faint.

Fomatadine: Good for MCAS and GI issues

Pain Reliever: Aspirin is the most popular as it’s compounds can have anti-inflammatory properties, that may help with other symptoms but Ibprofen and Acetaminophen will work just fine!

Face Cooling Stick: Found at five below, and can also be found on Amazon! Works so well

Salt Packets: In case you need some sodium in a pinch

Pulse Oxometer: to check your pulse or have others do it if you faint.

Blood Pressure Cuff: helps keep track of BP and what else is going on when you’re experiencing a flare

Zyrtec: Best for Allergy Management or Histamine intolerance. Literally what they give you at the ER for an Allergic reaction

Benadryl: Controversial as it has been linked to studies of dementia. However, always good in case you need it in a cinch

Cool Pack/Heat Pack: have both just in case. Can’t express how much it has saved me.

Gum/Tic-Tacs: Keeps your breath fresh especially after the occasional vomit episode.

Medical ID/tag: if you have one, keep i5 on your med bag.

Emesis bags: just in case you have to throw up

Dramamine: motion sickness

Zophran: best of the best. Has really helped nausea, you do need a rx though

Ginger Gum/chews: helps with nausea

Hand towels/tissues: my palms often get sweaty, so it’s good to have something just in case

Alcohol wipes: Good for if you need to do a finger prick, or just want to be extra clean

Hand Sanitizer: again, good for clean hands, especially when traveling

Portable fan: great for cooling off or when you experience a hot flash

[thebibliosphere]

tw: content under a cut for talking about calorie counting (in a positive way), restrictive medical diets, and MCAS 'remission.'

So it's been 5 months since I last saw the GI doctor who took me seriously regarding my mast cell dysfunction, and not only have I gained a LOT of foods back into my diet under his care without experiencing idiopathic anaphylaxis, but I've also managed to eat 2000 calories almost every day for the last 5 months.

Prior to his care, since 2020, I had been mostly surviving on a liquid diet with the odd bit of solid carbs and protein when I could handle it.

Which was better than the 2 things I could digest safely prior to 2019, which were oatmeal and filtered tap water toward the end when I was dying. But even after I recovered from that, any time I went over 700 calories a day in solid food, I'd be writhing in pain.

I still have days when the pain hits, and all I can manage is liquids, but those days are so much less, and thanks to being able to eat more foods, I can at least liquidate more nutrients to make sure I'm getting what I need.

Things will never be 100% healed. That's not the nature of this kind of immune disease. But they're better. I'm better. I'm still so scared to say any of this is in remission because MCAS is wildly unpredictable. But I'm so much better than I was.

And I'm going to go happy-cry and eat a gluten-free cupcake about it.

[lilac-set]

Ya ever think about how when you dont receive medical treatment for something you have to sign an “against medical advice” form saying that you understand if you dont follow medical advice you could experience increased and unforeseen problems including death, but if you do receive medical treatment for anything you also have to sign an informed consent form saying that you understand if you do follow medical advice you could experience increased and unforeseen problems including death

[crippy-tangerine]

More silly memes we have made today for you 😵‍💫. Apologies for the poor editing, we are tired.

If we do not joke about these things, we will throw stuff!!!

Yes, that is our actual eye 😅. Lighting is not very good in the photos but hopefully it shows the “blue” well enough hahah.

Sort of ramble + information below!

“Blue” sclera can actually be a grey, blue or purple-ish colour! It’s basically when the white part (sclera!) in your eye thins out/becomes more translucent, and you start to see the blood vessels and uvea more clearly. It is usually caused by the collagen (which helps make up your sclerae!) being affected. It can be caused by multiple things, including iron deficiency, certain medications, and genetic connective tissue disorders like osteogenesis imperfecta, Marfan syndrome, Elhers Danlos syndromes + other disorders that cause hyperpigmentation of the uvea and general eye area 🤍. It is really interesting to learn about actually, would recommend looking into it! (/genuine but not forcing tone.)

Anyways, we are still on our diagnosis journey, but we’ve been told that we likely have (h?)EDS, MCAS, POTS, CFS/ME by our specialist. Goodness me what a collection… Now it is just a waiting game + probably a lot of testing too 🫡. It’s good to have potential answers though! Much better than the past medical gaslighting!! (/genuine but slightly bitter tone.)

[scholarlycoffee]

mcas is an objectively stupid condition btw. wdym my day is ruined because I'm having an allergic reaction to... snow? ok sure

[demiboydemon]

Trying a new ADHD medication today that comes in a capsule made with pork. I’m very, very allergic to pork. I’ll let y’all know how it goes!

[kirby-the-gorb]

we are about an hour into rare disease day in my timezone! (it's always the last day of february, whether that's the 28th or the 29th.) the true prevalence of mast cell disorders is unknown, as they are often misdiagnosed or ignored. and mast cell activation syndrome, the most prevalent kind of mast cell disorder, only had diagnostic criteria laid out for the first time in 2010. so whether or not it's truly rare is really up in the air!

(personally I suspect it is just aggressively underdiagnosed but I'm not a research scientist or diagnostician right now. and even if it is rare, it's gonna be a lot less so than it was 5 years ago as certain respiratory infections are known to trigger it into visibility. that's what happened to me when I got mono at the end of 2015, further compounded when I got covid in 2022.)

all chronically ill people face a lot of hurdles when it comes to seeking diagnosis, accommodation, and treatment (all of which can be severely complicated by any intersecting marginalities), but rare diseases present a special challenge.

for example, I have an immune disorder. my immune system does not like being alive, my mast cells are way too jumpy and throw a tantrum over every little thing. you'd think an immunologist would be the one to treat me, right?

I've had 6 immunology referrals rejected in the past 9 months alone. multiple major immunology clinics in my major city tied to a major research university outright refuse to see patients with "mcas" written anywhere in their chart.

after 8 years of being debilitatingly ill, and suspecting it was immune mediated for 6, and getting it confirmed beyond a shadow of a doubt by the bone marrow biopsy last month, I will have my second ever appointment with an immunologist. another 2 1/2 months from now. the first immunologist lied to me about the reliability of the one available blood test, when I first came up with the hypothesis by myself 6 years ago, and forced me to abandon my (correct!!! now proven!!!) hypothesis for 3 entire years while we wandered around lost and got nowhere other than even more thorough process of elimination.

okay, well if my immune system is attacking me, maybe it's technically autoimmune? that's the rheumatologists instead of the immunologists, what do they have to say? dick all my dude, I don't have rheumatoid arthritis so they just shrug at me and go "idk, fibro? I don't know why you're here" and send me home with nothing. (I literally had a rheumatologist say to me, verbatim, "I don't know why you're here." buddy it's your job to read the chart and decide if I get seen or not, you tell me. at least he had a snazzy outfit.)

being chronically ill can be a terrible struggle no matter what, but a disease that is perceived as rare, accurate or not, adds a whole new layer of bullshit. (and of course there are much much rarer diseases out there, with even more hoops and dead ends and struggles and all-new layers of bullshit that even I don't have to deal with!)

anyway I'm having a shit time and using this awareness day as an excuse to productively bitch about it 👍