u/microwavedwood

I'm trialing a few meds for MCAS at the moment. One of the changes I noticed was a drastic change to my fatigue levels, it was almost instant

It's so much milder. I can still feel it a little bit, but it's just so much more manageable. I was actually really confused at first because I couldn't identify the feeling in my body (I'm autistic, I struggle with that), but I realised that it was a much milder version of the fatigue that I'm used to.

I'm in a bit of a crash after an appointment, and yet my fatigue levels now are pretty much what unmedicated me would consider a pretty decent day in terms of fatigue.

I'm really happy about this. Of course I'm still being very careful and pacing, that won't change, I'm just very happy about this win

Seriously, I would be so happy if I could exercise again!! I would love to go to the gym and get in shape. I'm not like this by choice. I catch myself daydreaming about being able to exercise frequently, remembering that I can't is always depressing.

I'm not even like super athletic or anything. Never was. I had a few sports I was interested in when I was younger but didn't pursue. But as I get older I WANT to exercise more and more. I get really frustrated that I can't, I feel trapped. I wish I didn't have the disease that prevents me from exercising. I'm really out of shape and my muscles are so weak it scares me sometimes. I do really wish I was healthy enough to go to the gym and freely exercise 😭

I found out very recently that I have MCAS. I'm relieved to finally have an explanation for my symptoms.. but at the same time I feel lost. I don't know what I'm meant to do from here.

I'm lucky that I have a good doctor who is treating it and I feel grateful that I don't need to worry much about the medication side of things currently. But there's so much I need to figure out.

Like what triggers my MCAS. I'm very bad at identifying things going on in my body and I don't connect the dots easily. I eat the same thing every day (I'm autistic + have a mental condition that severely limits what food I eat) which should make it easier to identify.. but at the same time my diet is already so limited, I'm really scared of having to limit it even more 😭

Idk I just have a lot of mixed feelings at the moment, I don't feel like I've had enough time to figure this entire thing out yet. Hopefully it'll get easier with time

There are a lot of symptoms I'm currently looking back at and wondering if they're MCAS related.

This is going to be gross but after my body started going crazy one of the first things I noticed was that I have so much mucus.

I used to have so much in my throat and it would get stuck and I would end up gagging loads or sometimes choking trying to get it out. It really sucked. It never really got better either.. I constantly feel like I have phlegm in my throat. It gets so bad that I end up using a neck pillow at night because it can make swallowing harder. It's slightly scary if I'm honest

I cough up loads of mucus, I also regularly have issues where large amounts of mucus in my throat tries to dislodge itself but it takes a really long time to be able to swallow it because it's sticky and there's so much of it. I regularly use a saline nasal spray to try and get rid of some of it with varying levels of success or failure.

I also have this weird thing where after eating certain foods I cough loads then spit out mucus. That's what has me wondering if it could potentially be related to mcas since it's worse after I eat specific foods. Alongside the timing of the other symptoms only starting after my body decided being healthy was overrated

I'm just curious, does anyone else here experience anything similar?

Oh my god I LOVE chewing gum I used to tear up my skin and mouth and stuff but I have since discovered the wonderful world of chewing gum

It tastes yummy

It redirects my harmful stims

And there's multiple ways I can stim with it

I LOVE CHEWING!! I LOVE CHEWING GUM!! I CHEW ON SO MUCH GUM THROUGHOUT THE DAY!!!

I especially love strawberry chewing gum I love my pot of strawberry chewing gum 🤤

After a very long time of having weird and seemingly "random" symptoms my doctor told me about mcas and recently he has prescribed some meds, specifically antihistamines, a mast cell stabiliser and a H2 antagonist

I'm a little excited to start because my quality of life isn't fantastic because of various health issues, if I could get this issue under control or at least make the symptoms a little more tolerable it would increase my quality of life. But at the same time I'm also quite nervous about starting, I don't really think I have a reason to be nervous but I am anyway aha

I would really love to hear from people who have received treatment and your experiences with it if that's okay, thank you so much if you're able to share! I would really appreciate any reassurance or to hear about your experiences

(Also quick disclaimer just in case, I'm not looking for medical advice or anything! I'm leaving medical advice to my doctors lol)

I can't handle anything anymore. Things I used to be able to handle cause me so much more distress. I think it's partially because it's so much harder to handle emotions and things that cause distress w/ autism when you're so exhausted

My sensory issues are a lot worse than before. Everything's more overstimulating and more distressing. Not to mention how overstimulating being constantly uncomfortable is. I'm constantly uncomfortable and the mental load of constantly needing to think about every little action you make because you have no energy adds to it.

Before mecfs I could generally handle things that distressed me because of autism, I didn't get many meltdowns. But now everything leaves me on the brink of a meltdown, if not a full blown meltdown. Just had a meltdown over a slight change in routine that wouldn't have caused a meltdown before I developed mecfs. It was already hard to calm myself down after becoming distressed, but trying to regulate your emotions when your always exhausted is awful. It makes negative emotions so much bigger and much less easy to handle. I feel like a cranky toddler

Meltdowns suck even more now because they used so much more energy. I try and hold my meltdowns in until evenings if I can handle it (which isn't very often) because if I have a meltdown during the day I can't keep my eyes open for the rest of the day and I'm just so much more exhausted after. It's harder to recover from

Then there's the social side of things. I already struggled but thanks to the isolation of this disease I've pretty much lost the few social skills I had. I can't even think about messaging someone without distress. I never know how to reply and I can't mask the way I used to.

Generally mecfs has made my autism harder to manage. I hate mecfs for a variety of reasons, one of which being how it impacts my other conditions like this.

Are you also autistic? Do you struggle more now?

In school I would always dread language classes. I didn't enjoy these classes very much and I found them quite tedious.

But when I started learning languages independently and for fun instead of for school I fell in love with it. It's difficult of course, but it's so satisfying when everything starts to click into place and you notice your progress. I really enjoy setting aside a portion of my day to learn languages, such as Russian (TL). I plan to start to learn a few more too. There isn't as much pressure as there is to learn a language in schools and I can go at my own pace which is something I greatly appreciate.

I would love to know if anybody else relates to this

Everything hurts. I haven't slept well in ages. All of my symptoms have decided to get worse. Heatwave. I just feel so bad

I don't really have the energy to complain loads but everything is bad and I am sad and I just want to feel good

(Not looking for advice)

When I get too overwhelmed by everything sometimes I just go completely blank. I detach from reality, I lose the capacity to mask and essentially just turn off if that makes sense?

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Like I become the embodiment of the "😐" emoji, can't make facial expressions, can't properly socialise, barely talk and can hardly think. It feels like my brain turns off until I'm able to get away and recover by resting alone in a quiet place

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Normally I tend to just have meltdowns when too overwhelmed but every now and again this happens. Does anyone else here get like this?

I tend to have trouble telling when people aren't being genuine towards me. I usually don't realise I'm being bullied until ages after

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On one hand it doesn't give the bullies as much satisfaction because I just take things at face value, but it can also make me a target which sucks

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There have been so many times I haven't realised I was being bullied or made fun of for years and then one day it clicks and I realise. Had one of these moments last night, I was thinking about a memory I had from school which wasn't great, but I didn't realise it was bullying until last night.

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If I knew I was being bullied so much as a child I would have been a lot less happy. In a way ignorance was bliss for me, it sucks that I couldn't tell what was happening at the time but I'm glad that younger me didn't know how other people perceived and treated me, I was already going through a lot and I doubt that this knowledge would help with that

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I'm curious, does anyone else have similar experiences?

Being hyperfixated on something can be helpful in the moment (when it isn't impacting my ability to do other things), but it really sucks knowing that all of the focus and motivation will go away. I would much rather have less intense but more prolonged interests instead. I hate that it never lasts

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Every now and then I will become hyperfixated on languages. I study extensively and obsessively, it takes over my mind and then it eventually goes away and leaves me with less focus and motivation to study. Hyperfixations for me can be enjoyable in the moment and allow me to get a lot done quickly, but I always experience dread knowing that the productivity won't last which sucks when hyperfixations are language oriented because consistency in learning is something quite important.

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The change between hyperfixations taking up all of my brain space to them just being.. gone is something I always dread. It's embarrassing going from talking nonstop about something to never mentioning it, I don't like becoming obsessed with things then forgetting about them. I worry in case others judge me for it a bit honestly.

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I would really love to know if anyone else feels similarly

I have been sleep deprived for almost 3 weeks and it makes me so fucking meltdowny literally any mild inconvenience is making me tweak someone put me down

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Literally on the brink of a meltdown over chips oh my gof

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(Not looking for advice for the sleep deprivation, it will be sorted professionally soon. Waiting for the appointment is just hard but it's soon and I will be ok eventually it's just very sucky when lack of sleep triggers meltdowns)

When I first got prescribed LDN I was also given the suggestion of trying antihistamines which I started soon after. They've helped me a lot

This year I saw another doctor, he brought up the potential of MCAS and told me to stop taking the antihistamines so that I could properly document my symptoms.

I tried it once a few months back, but I couldn't manage the symptoms and went back on. I'm trying again at the moment (because my follow up appointment is in a few weeks) and hey would you look at that everything sucks more

The most inconvenient symptom is that my sleep is so much worse. My mecfs does not seem to be a fan of the lack of sleep. I'm also autistic and get meltdowns when I'm exhausted which isn't very fun.

I also really don't like how much I'm overheating and how itchy I am. I'm uncomfortable all the time. I don't like it. There are other symptoms that have worsened but the lack of sleep, worsened overheating and itchiness are the most annoying

I think the lack of sleep is probably going to lead to pem, it did last time I tried to stop the antihistamines. I'm really not enjoying this.

I'm not looking for advice or anything, moreso just complaining. I'm exhausted and uncomfortable and weepy, I'm just not having a good time and want to complain. I'm tired

I see other girls talking about it and how much they want to have a partner and romance is portrayed a lot in media for teen girls and women but I just.. don't get it

Like it brings other people joy so I wish I could care about it, but I just can't. I have no interest in it. I'm 18 and I've never really wanted a relationship. I don't feel embarrassed by not having had one or anything I just feel really apathetic towards the concept. This part might sound cringey but it does kinda gross me out and make me uncomfortable. I'm still the type to look away when people kiss in movie. I don't want a relationship or anything else that comes with it. Sometimes I get (gently) teased for not having had a relationship but I just don't want one. The idea of being in a relationship feels unpleasant to me if that makes sense. I just can't imagine myself in one.

This isn't intended to come off in an "I'm not like other girls" type of thing, I just feel kinda weird about not seeing the appeal in something this common and I want to know if there are any other autistic women in this situation since I don't really feel like I can talk about this in quite a lot of places

I don't have money in my PayPal account, but I do have money in the bank account I have attached to my PayPal. If I transfer somebody money would PayPal take the money from my bank or would I end up with a negative balance?

Apologies if this is a silly question, I'm new to paypal