@adhdmarie There's a lot of correlation with #MCAS as well. One of the things I deal with now also is that inflammation cascades, so trouble in one part of my body triggers a full flare event. Exert or strain myself, even, and I can get brain fog. A stomach upset can trigger other events/responses in my body these days. I had confidence at one point maybe I could figure it out, but it's frustrating the way "something happens", and causes something else.

@UntoNuggan Thanks for this amazing thread. I would describe my #MCAS as being in a chronic state now, with a wide range of connected symptoms. Pretty much live on a strict diet, avoiding environmental triggers (exertion, paint, gasoline, perfume, some artifical flavors), anti histamines, and quercetin, though I think I've reached the point where I need to go on a proper med like Ketotifen. I only learnt a few years ago that my phantom UTIs (which a cause was never found), can be caused by mast cell issues, along with a laundry list of pain, exhaustion, breathing issues, brain fog, headaches, joint pain etc.

Got admitted to the hospital last week. Discharged after three days with a #PICCline and training to self-infuse at home. Currently I don't have as much fluid prescribed as I'd like but hopefully I can get that resolved soon. Doing much better in general though, despite the #CFS flare that is, predictably, hitting hard. My body is completely wrung out but my brain feels like it's finally awake again after 5 months of deep fog. #ChronicIllness #MCAS

Alright, time to revisit the intro message!
I'm located near Portland, OR in the PDX. I'm an infosec technical editor/writer by day, and a massive plant nerd by night.

I've been collecting aroids off and on since the early 00s. I'm beyond stoked that they're becoming so easily accessible today (even if they're still weirdly overpriced in some instances).

Outdoors, my spouse and I are growing a food forest and specializing in foods/plants native to our area. We're slowly turning an acre into a lovely orchard/salad bar.

We've got chickens/goats/sheep plus 3 cats and 3 tortoises. All this is to say we're creating our own little neurospicy disneyland/happiest place on earth.

Still very much taking Covid seriously, even though that's becoming a hella lonely proposition. We're both high risk and not keen on getting any more health issues than we've already got.
#NEISVoid #CovidIsNotOver #HousePlants #Aroids #MECFS #MCAS #POTS

RT @sibylle_berlin
@Karl_Lauterbach @Markus_Lanz Bilanz: 100.000e #LongCovid Erkrankte mit überlappenden Krankheitsbildern #SmallFiber Neuropathie #PoTS (posturales Tachykardie Syndrom) #MCAS MastzellAktivierungsSyndrom #MEcfs Myalgische Enzephalomyelitis. Versorgung: KEINE. Aufklärung: KEINE. Wie schon die Jahrzehnte zuvor‼️

RT @sibylle_berlin
Als Mahnmal für die Kranken, vergessen worden von Gesellschaft, Politik, Medizin, Wissenschaft & Forschung.

#KrankUndVergessen
#Gesundheitsskandal
#POTS
#SmallFiber
#MCAS
#Gefässschäden
#MitochondrienSchäden
#Bindegewebsschwächen
#FQToxicity
#LongCovid
#Lyme
#MEcfs

Good morning #NEISVoid.

I have a new physical therapist.

She had never heard of #MCAS and #EDS.

So she researched and found a great article to read. She shared it with me to see what I thought.

I am now sharing it with you.

https://academic.oup.com/ptj/article/99/9/1189/5510431?searchresult=1

I wish more doctors would read it!

It isn't perfect. I would disagree with the "Anxiety and panic disorder" under Cognitive issues. I would call that a misdiagnosis by doctors who do not recognize an actual need for the concern of the patient. Legitimate reasons for caution.

Other than that, lots of good information.

I loooooove to sleep for 2 hours and be unable to stay asleep because I'm just that itchy. #MCAS

Exhaustion. Exertion. Brain tired. Body tired.

Rest day.

#Disability
#EDS
#MCAS
#DeafBlind

Hello Fellow #EDS #MCAS friends,

Basically, I have a form of hip bursitis.

Only treatment is physical therapy, or a steroid shot.

The steroid shot is counterindicitive for EDS.

Any oral pain meds are counterinditicitive for my single kidney and high kidney values.

So back to physical therapy I go. Since it had continued to get worse, she had wanted me to stop (About Thanksgiving), to verify it wasn't something like a chipped hip. So exrays and all show very little. Plus insurance had stopped covering it until the new year.

So, I need to find the studies I have seen about steroid shots and #EDS. How many can we get, if I can stand them, before they do worse damage?

Do they really make any difference in pain or mobility?

@ohtwist

#AmReading Assassin's Apprentice by Robin Hobb on day ?? of #MECFS crash. Really thankful to have my ability to focus on reading back so I can escape the pain somewhat. Though now I'm having an #MCAS reaction to something and I'm experiencing itching from hell so we'll see if I can read through that. Needless to say, I'll be having trouble falling asleep 😭

Someone mentioned weightloss for the new year.

Here is some weight I want to lose -

2 pounds - winter hat worn inside a building to keep head warm

1 pound - gloves worn inside a building to keep fingers warm - interferes with typing.

5 pounds - heavy sweater worn on top of four layers to keep warm inside a building.

10 pounds - winter coat.

10 pounds - fur lined boots.

3 pounds - sweater worn on top of two to three undershirts to keep warm inside.

1 pound - each for two undershirts worn to keep warm inside a building.

3 pounds - fleece long johns, worn under heavy pants to keep warm inside a building.

5 pound fleece blanket wrapped four times to keep my upper legs from losing body temperature (even with fleece underpants, and winter pants on.)

(Yikes! 40 pounds of excess clothes that should not be needed indoors!)

And that would still leave a nice long sleeved shirt, pants, and winter socks on.

Other types of weight I wish to lose:

That fiery, knife twisting pain in my hips and upper legs.

Brain fog from the pain.

Exhaustion from the pain.

#EDS #MCAS #Disability

RT @coco_chatel
Spending my first Christmas with #LongCOVID. It’s tough for me but even tougher for people who have been sick for much longer. Sending much love to the LC, #MECFS, #POTS, and #MCAS folks out there. May the year ahead bring fewer flares and more upright time for all of us. ❤️

Ah we've reached wanting to chew through the walls stage of the #MCAS flare aftermath! My favorite (not). Feeling so restless and tired at the same time is the worst ugh.

#ChronicIllness #NEISVoid

Of course yesterday's #MCAS attack means a horrific wave of histamine in my brain, not JUST stomach pain nuking my ability to eat almost completely. I also have to contend with intense and overwhelming anxiety depression and need to stim that can't be satisfied. I just want to cry and scream. But all of that would engage my core which would make my stomach hurt more lmao. I'm so tired of this. I'm so done.

Yesterday I said my ongoing rolling health crisis might be resolving; today I spent 3 hours in the ER and I still feel like shit. I remember first learning about #MCAS and being glad I didn't experience *that* chronic illness... surprise! I'm so tired. Nothing to do but keep dealing with this shit but I really just want to curl up in a burrow in the ground and sleep. Need some hibernation time.

#ChronicIllness #NEISVoid

RT @mcas_hope@twitter.com

Du hast ein paar Minuten Zeit für #MCAS? Dann nimm gerne an der Studie der Uniklinik Aachen von Joana Salomon teil. Ach wenn diese schon eine Weile läuft werden noch immer Teilnehmende gesucht!

#mastcell
#mastzellen

https://mcas-hope.de/blog/neue-mcas-studie-zum-thema-ernaehrung-nimm-teil/

🐦🔗: https://twitter.com/mcas_hope/status/1602915004310773768

Another night another bout of #MCAS induced insomnia. Sigh. I'm not going to get too upset about it, as that won't help anything. I know I'll fall asleep once my brain and body have calmed down and trying to make myself calm will only make things worse. Frustrating though. Ah well! I've had many nights like this and I'll have many more.

Trying to get boosted but I keep being in this brutal #MCAS flare and it's a *really* bad idea to throw a new injection at my body in the middle of the "I can give you anaphylaxis just because whenever I want" disease flare. Really frustrating though. I'm late for the next booster and though I've had outrageous luck not catching it so far, the risk always has me antsy.

#MCAS really gives me sympathy for pre-germ-theory people. Sitting here describing my most recent reaction to my friend (who thankfully, also has MCAS and knows how weird this shit gets), explaining that it was probably caused by water in a glass jar with a metal lid touching the silicone seal on that lid for just a while too long.

My body is normal and reacts proportionately to things it dislikes. ❤️