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#mcas

5 posts5 participants0 posts today
Public
JSkier :archlinux: :debian:

Apparently, my heat tolerance is way lower than it was last summer (previously 94 F). Running 5 miles in 80 F weather today triggered a mild asthma attack (I always have my inhaler with me), and my heart rate hit 190. The high HR was probably a combination of the temperature outside, pushing too hard, and all the medications I'm on. Classic fuck around and find out 😖

I will be inside on the treadmill until it's low 70s from now on.

Looking forward to starting IgE inhibitor shots in a week or two, hopefully knock down the pre-existing asthma and urticaria, and new severe allergies I now have this spring. Additionally, cut down on the medications I'm on. My doctor is unsure if I have secondary #MCAS from #longcovid, but those three symptoms, combined with the neurological ones, sure aren't helping my quality of life lately.

I want to conclude with, I don't believe I have PEM, CFS, or POTS. My recovery plan is to stay as healthy as I can for as long as I can, and is not typical for people suffering from long covid.

#running#runnersofmastodon
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WearyBonnie

I'm only a few minutes in to the latest episode of the Make Visible podcast, but it's really good. If you're interested in long covid & other complex chronic illness with poorly understood pathophysiology, you may like to check it out.

> Make Visible: Understanding Complex Illness: #14. Wearable technology and patient-led innovation with Dr. David Putrino

Episode webpage: madevisible.podbean.com/e/14-w

madevisible.podbean.com#14. Wearable technology and patient-led innovation with Dr. David Putrino | Make Visible: Understanding Complex IllnessData gathered from wearable technology can warn of impending symptom exacerbation in complex chronic illness a new study has found. In this week’s episode Dr. David Putrino discusses the findings.  He, in collaboration with leading immunologists, microbiologists and data scientists, tracked data points from 5000 Visible app users (who enrolled in the study) to establish that HRV and resting heart rate can be used to predict a crash.  Analyzing more than 55,000 readings over 1000 days they were able to see changes in the autonomic nervous system of contributors using this biometric data.  The largest study of its kind, these findings have the potential to provide the basis for individualised care strategies for this enormous cohort of patients. Here we discuss the function and dysfunction of the autonomic nervous system.  Dr. Putrino gives us an overview of heart rate variability, the way in which it fluctuates, what its readings can determine about our health and ways in which these can be influenced. We talk through the power of breathwork including two of Dr Putrino’s studies – on resonant breathing and hypocapnia – showing the way in which breathing impacts our physiology but determining that we have innate power to influence our health. As Director of Rehabilitation Innovation Mount Sinai Health, Dr. Putrino‘s focus is on real-world solutions for this patient cohort. In a world where new drug approval takes 10 years and technologies in this field can take 17 years to reach market, his aim is to bring patients tangible treatments and protocols in a practical timeframe. Currently involved in clinical trials for rapamycin and vagal nerve stimulation, Dr. Putrino endeavours to re-purpose drugs and technologies that are already approved in other situations to create personalised strategies for this engaged cohort.   Make Visible @visible_health @visible.health
#LongCovid#MECFS#POTS
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Valerie Roney

After peeling back my immune meds this winter (because I am getting better yay!) I am now layering some back in for 🤬 allergy season.
As it's top of mind these days I'd like to share a list of weird symptoms that can be histamine driven:

Heartburn
Poor sleep
Nosedives in mood
Loss of appetite, poor digestion
Global body pain
Rag-doll tired
Brain fog
Clumsy
Weepy or irritable
Itchy (no rash)

Best indicator I have is "histamine flush" across my nose and cheeks.

#mcas#cfsME#longCovid
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conscientious objector🇨🇭🪂

Heute vor 5 Jahren, nach dem ersten vom #Bundesrat & #SRG / #SRF ausgerufenen Ende der #Corona-Pandemie, habe ich mich bei Handwerkern mit #Corona angesteckt. Obwohl wir uns, wie vom #BAG empfohlen, die Hände wuschen und sogar 2m Abstand hielten.

Was folgte waren 12’000 Franken Arztrechnungen, 3 Monate Krankschreibung und 1,5 Jahre krank mit Teilzeit. Zurück blieben #MCAS und #Asthma. Verlorenes Vertrauen in Medien & Ärzte und ein verständnisloses soziales Umfeld.

#Aufarbeitung
#LongCovid

Public
Juchti

Tobias ist schwerstkrank, er hat #MECFS und die typischen Komorbiditäten #POTS und #MCAS. Da es noch keine für ME/CFS zugelassenen Medikamente gibt, muss alles aus eigener Tasche bezahlt werden, was helfen könnte. Tobias ist 24/7 bettlägerig und auf Hilfe angewiesen. Ihm wurde Sterbehilfe gewährt, aber er möchte leben. Vielleicht könnt ihr ihm helfen und diesen Post teilen und/oder spenden. Danke.
gofundme.com/f/help-save-tobia

gofundme.comDonate to Help Save Tobias: His Last Hope to Live, organized by Tobias SchweikertHi, my name is Tobias. I am 32 years old and from Germany, and I am fighting… Tobias Schweikert needs your support for Help Save Tobias: His Last Hope to Live
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Juchti

Ich möchte euch noch auf die Arte-Doku "Chronisch krank, chronisch ignoriert" hinweisen, die die Schwere der multisystemischen Erkrankungen #MEcfs und #LongCovid thematisiert, aber auch die Zusammenhänge zu den Erkrankungen #MCAS, #CCI, #EDS, #FQAD, #POTS etc.

Die Doku ist auf YouTube und in der Arte-Mediathek und zeigt eindrücklich das Leid der Betroffenen.

Wann passiert endlich etwas?
youtu.be/YnnDSHPaAsY?si=aSaNk1

YouTubeChronisch krank, chronisch ignoriert | Doku HD | ARTEBy ARTEde
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Carter

Hello! I'm a disabled author sharing my #poetry #chapbook! I have #MCAS and for me, it caused significant neuropsychiatric symptoms before treatment so I documented my normal in poetry.

From a period of misdiagnosis and desperation,
Allergic to Sanity turns struggles into stanzas to document the everyday calamity of an unpredictable bodymind. When mast cell activation causes madness, Allergic to Sanity pulls skeletons out of the closet to examine the dislocations of reality.

bottlecap.press/products/aller

bottlecap.pressAllergic to Sanity, by Carter Hemion
Continued thread
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Anna

In case it was missed in the post above, this is my updated article:

👉 thecanary.co/global/world-anal

My doctor predicts I will die if I don’t leave soon.

I need a solid, safe, home I can go to and recover to at least a stable baseline. It’s not full recovery, but it’s better than a slow death.

Help please 🙏

#PwME #LongCovid #MECFS #Hypothyroidism #ChronicIllness #Neisvoid #Abuse #Housing #Dysautonomia #SocialWork #MedMastodon #PWLC #MutualAid
#HumanRights #Press #Housing #Journalism #MECFS #SevereME #Abuse #Neglect #MutualAid #Narcissist #Psychopath #MCAS #MCAD #Endometriosis #ChronicPain #CostOfLivingCrisis #Melbourne #Australia #DomesticAbuse #DV

@chronicillness @longcovid @neisvoid
@disabilityjustice
@disability @socialwork
@dysautonomia @mutualaid
@mecfs
@chronicpain
@mcas
@australia
@melbourne

Canary · Nearly a year on and severe ME patient Anna is still trapped in life-threatening domestic abuseNearly a year on and severe ME patient Anna is still trapped in life-threatening domestic abuse from Canary on 1 April 2025
Continued thread
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Barbara Wimmer - shroombab

Vergessen hab ich außerdem oben in der Liste:

- Menschen, die mir ihre alten E-Book-Reader schenken, die sie nicht mehr brauchen und die seither regelmäßig im Einsatz sind
- Menschen, die mich bei mir zu Hause besuchen, auch wenn wir vorher gar nicht so "nah" waren, dass Hausbesuche auf der Tagesordnung standen

Auch euch DANKE.

#MECFS#postcovid#mcas
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Barbara Wimmer - shroombab

Ich weiß, dass nahezu alle Menschen da draußen ihr "normales" Leben wieder aufgenommen haben. Dass ihr da draußen lacht, weint, was trinkt, euch verabredet, bastelt, lötet, oder einfach Spaß habt.

Ich fühl mich wirklich gefangen in meiner Wohnung, die ich nur gegen einen schlimmen Preis (... starke Schmerzen & Symptome) verlassen kann und gefangen in meinem Körper. An meinem Leben ist nichts mehr wie früher.

Damit hab ich sehr zu kämpfen.

#PostCovid#MCAS#POTS
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🅐🅛🅘🅒🅘🅐

New #introduction post!

I'm Alicia and I'm a fibre artist (#dyeing #handspinning #felting #needlefelting #weaving #crochet #embroidery #upcycling #sewing) with interests in #mandala #art #psychedelicart #sacredgeometry #neurographicart and #watercolors.

My family and I run a business called @Fibre2Fabric where we dye all sorts of exotic #fibre #yarn, and #fabric.

I live in the country with my partner and our 6 #cats, 3 #dogs, #snake and #crestedgecko where I enjoy my many interests. (#gardening #plants #herbalism #fungi #music #ukulele #piano #dancing #flowart #reading #writing #tarot #poetry #haiku #cozygames and I'm getting more into #opensource / #linux)

When I say flow art, I mean spinning props like #hulahoop #leviwand #puppyhammer #poi #staff #silkfans #firefans etc.

I love #languagelearning. I studied #German and #Spanish as a kid, took #Japanese in uni, and I'm currently studying #ASL #Cree #Tokipona #Spanish and #Chinese. I also dabble in #French and #Latin sometimes and I'm learning #Greggshorthand to write faster. Cree is my favourite language and Spanish is my second.

I've been cursed since childhood with that lovely trifecta of #heds #pots and #mcas. Healing slowly but surely.

Hope I get to meet even more cool people the algorithms would normally drown out on other social media sites. I love it here!

A person with long brown hair with blonde tips. They are wearing a purple and black hat, rainbow glasses with gold rims and have multicolored metal snakebite piercings. They are smiling. They are wearing a black, purple, and white top.
#intro#yeg#edmonton
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