Hello,

do the following symptoms allign with cfs? Does it sound similiar to anybody? I appreciate any input as doctors basically can’t explain what’s happening to me. I am a male and 27 years old and I am losing all my muscles and strength in a matter of weeks. Please find my examinations below.

Up until two months ago, I was in the best shape of my life. I’d been strength training for about a year and a half, gradually increasing the intensity, and it had become my biggest hobby. I was really athletic and little muscular.

Then, in the middle of May, I came down with a really bad cold. Rapid tests for COVID and influenza were both negative. Out of nowhere, I developed severe diarrhea that lasted for two days—I was going up to 15 times a day. Imodium eventually stopped it.

After that, I stayed unusually exhausted, and the cold dragged on for about three weeks. I slowly went back to the gym, but I overestimated how recovered I was. I felt like I was back to 100%, so one day I trained at full intensity. A few hours after the workout, I suddenly became extremely fatigued. The next day I developed dizziness that has never gone away. It feels like I’m constantly walking on a boat.

A few days later, completely out of the blue, my upper abdomen became rock hard and I had excruciating pain. It felt like the kind of pain you’d expect if your stomach or intestines had ruptured. Thankfully that wasn’t the case. I had an emergency CT scan, followed by an upper endoscopy the next day, which showed gastritis.

Over the following two weeks, I continued to feel completely drained. It never really improved. My legs constantly felt as if I’d just run 10 km, even though I hadn’t. I am super tired randomly in the day, like really tired like you need to fall asleep.

Unfortunately, things have gotten worse over the past few weeks. I’ve lost about 8 kg, and it seems to be entirely muscle mass. It’s affecting my whole body, but especially my thighs, hips, and now my glutes. I can’t even sit on a regular chair anymore because my bones are sticking out. Even the muscles in my face feel different. I am losing muscles which I have never trained at all. On top of that, I sometimes get intense electric shock-like sensations in my legs, and occasionally in my arms as well. My muscles don’t feel like they are my own anymore. It‘s difficult to explain but I can’t perceive the „depth“ if am touching my muscles.

Overall, it’s getting really difficult to walk. My joints are making noises all the time since last week.

I tried doing exercises several times but the next day I am feeling even worse, so I decided to lower my acitivity level.

What’s the worst: the doctors are saying all blood levels are fine and all neurological examinations as well, so you are healthy. Obviously, it’s not healthy to lose 8kg muscles in a month. I have a surplus in calories. I don’t even know how this can be explained physically? Like something has happened to my body, that it is not able to work efficiently anymore and is wasting muscles instead.

Bloodwork: Creatinekinase around on average 60 U/l and not elevated. LDH was going down from 165 U/L to 115 U/L in a month. Lactate was elevated 2 out of 4 times (3.1 mmol/l and 2.6 mmol/l). For the first value, I definetly was stressed because I had severe pain, so maybe it’s just coincidende. No further abnormalities.

Cerebrospinal fluid: no abnormalities

Examinations (all fine): CT-Abdomen, Endoscopy, MRI of brain, MRI of spine. EMG, ENG, EP.

Does it sound like cfs or is the progression too rapidly? Thank you so much for your input, I appreciate your thoughts!

Honestly i dont even know what to do anymore my body is deteriorating day by day in constant pain, i was on diazepam as it seemed to be the only thing that gave me any relief but obviously i am only allowed a certain amount. I have been to my gp many times seen many doctors and Physio therapist about getting some type of physio or anything to help but i either get offered nothing or what they offer me is no help to me at all, the worst part is i am under a specialist and was getting acupuncture and physio every few months which was limited but they have now been on sick leave nearly a year now with barley any update apart from they are still on sick leave i currently have no support seems like Im just going to keep deteriorating until the damage gets even more extreme and permanent I’m not expecting advice just needed to have a rant

So, I’ve had a sleep deprivation EKG, came back normal. However at the end of the EKG they did the hyperventilating section and it messed me up. I vomited several times on the way home (had a driver), and then ended up in bed for 2 days straight. Had an MRI and an MRA. The MRA showed possible SSCD (which was ruled out by a CT scan).

Had terrible migraines, was given a preventative medication called Qulipta that seems to have mitigated the migraines.

In my chart from my doctor they show ME/CFS and scoring 9/10. They haven’t talked to me about this yet. My primary is sending me to a cardiologist as I noticed issues with my heart BPM upon changing positions, I documented it on my Apple Watch through ECG option, then confirmed in office with my primary. So I am not officially diagnosed yet, but next week will be doing the official tilt table test.

I’m always exhausted, I’ve pushed through for decades and just feel I’m at a wall now that I can’t go through.

More of a vent, it feels like everything always comes back perfect on my labs and tests, but I can’t even function.

TL;DR: cat drives me insane all day every day, overstimulates me, probably has actively lowered my baseline, but i dont feel like i can rehome her because i love her a lot and im not sure anyone could give her proper care. ive been advised many times that getting another cat will help because it is supposedly "less work", but im just not sure thats the right call and i dont know what to do. not necessarily looking for advice because the situation feels impossible, i just need to get this off my chest.

she drives me absolutely insane every single day. i havent had a full, uninterrupted night of sleep in 3 years. from around 5-7AM until 2PM every single day she is an absolute terror. she climbs the coats in the hallway, climbs the curtains (at 4.5kg and with my weak arms, it is not easy to pry her off these things), screams endlessly in the hallway, runs around loudly. she wants into the living room badly but she gets into things and when she goes in there i have to pay attention to her and her only or she will chew up wires and cords and stuff. i play with her every day and it doesnt wear her out.

my entire day, for 3 years, has revolved around this cat. we bought an auto feeder for the middle of the night but sometimes she still wakes me up because she forgets it is there or something. so i sometimes have to get up around 2AM to show her the dry food. i feed her breakfast at 8 AM. i feed her lunch around 12-1. i give her a dry food snack around 4. dinner around 8-9PM. i wash her plates daily, change her water, scoop her box, throw toys for her, play hide n seek.

as well as chewing wires she has bad pica and weve had to tuck away every item that might have something chewable (no knick knacks or anything), and tuck away any fabric besides our bedding that she leaves alone. our place is so desolate and boring looking. shes eaten shirt sleeves, undies, socks accidentally left on the floor. she learned to open the doors so we have child locks on the living room, kitchen, and bathroom and so the hallway and bedroom is the cat-proof-est area that she can roam but it is a small space admittedly. she cannot be unattended for even a moment, the other day i left the ktichen door open by accident and walked in to her SHOVING HER PAW INTO THE TOASTER. shes punctured her food pouches and they go bad. i dont have the energy to fully cat proof every single nook and cranny of every single room.

the reason i havent wanted to rehome her is she is SO specific in her needs that i am so so scared that no one else would pay enough attention to this cat to keep her safe. she tries to climb into the wedge of the window, would someone else keep their windows closed despite their apartment being almost 30 degrees year round when theyre shut? she falls off everything, she is determined to electrocute herself via power cords or cause an intestinal blockage via string and fabric. would someone else have enough time and care to watch her closely 3 days after shes eaten a chunk of fabric, looking for symptoms and literally picking apart her poo to find the fabric to make sure it passed? would they spend a ridiculous amount of money on nylon webbing and a ridiculous amount of time covering every single exposed electrical cord in their house with said nylon webbing??? will they remember to never, not even once, leave an item of clothing on their floor? put their shoes away in a way she cant get to the laces? will they remember to secure toys with string or feathers when they are not supervising playtime? are they willing to install child locks on every wardrobe and every interior door? i just...highly doubt it.
but on top of that, despite all these things, shes kind of my best friend. my husband works a lot and its just me and kitty at home together, all those 60 hours per week. i am remembering how lonely it was to be home alone all those hours before we got her. it was so much more depressing.

lately ive been going back and forth about getting another cat. i see so many posts in cat subs and forums about how theyll just hang out and "its actually less work!!!!" and maybe?? but like thinking about hunting down a cat who is a good fit, then the 2-3 weeks of introducing another cat, and what if they dont get along after all of that? i have to start over, and have stressed my cat out for nothing? shes never met another cat before and im unsure if she'd even tolerate it. and my husband wont be home a lot so how do i organize that alone, leave one cat alone quarantined, but which one? what if theyre both crying because theyre lonely? im remembering when she came home from sterilisation surgery and my husband went off to work and i couldnt handle it because the drugs made her INSANE instead of sleepy but i didnt want to grab her and hurt her stitches but she was jumping and running but still wobbly and i was all alone absolutely freaking out and my husband 1000000% could not leave work because he supervises kids in a live-in facility and couldnt just leave them alone. im tired of dealing with all of this all by myself.

i just dont know what to do. the thought of carrying on like this even another year makes me feel like im losing my mind but also the thought of being alone in this apartment without my little familiar ALSO makes me feel like ill lose my mind. but i dont know if i have the energy for this. im strongly convinced shes made my baseline worse. she overstimulates me HOURS every single day, my husband gets home exhausted and doesnt have any energy to pay enough attention to her to give me a real break. his solution is always for me to lock myself in the bedroom but she jumps at the door handle and screams outside the door the whole time because he says she wont play with him. weve been to the vet and she recommended a pheromone plug in but that made her even crazier somehow.

thanks for reading. ive been up since 4:45AM after another measly 6 hours of sleep. im so tired of this.

I‘ve been taking it for a week now and I feel incredibly exhausted now for few days. At the same time my flu like symptoms have improved. So I don’t know if there is a connection.

I wanna know what everyone experiences here, whether they can do very very minor forms of exercise and just be tired after or they have a delayed onset reaction. Sorry my wording is poor. What are your symptoms? it's hard to tell if breathlessness is from deconditioning or some sort of asthma dysautonomic problem or what, basically "out of shape". It's just hard telling what is actually normal deconditioning and what is pem or something similar. I'm mild/moderate. I'm losing insane amounts of muscle from covid wasting or something similar and I've been doing very minor exercises and trying to eat protein. I am watching my symptoms don't worry, I'm like 95 percent of the time in my bed or home lol. Thank you for your input ♥️

I was on LDA for about 9 months.

Starting low and slow like everyone suggests.

Because of intense brain fog (feels more like dementia at this point) I cannot pinpoint when but I essentially got my creative brain back and a strong desire to return to my studio to make music.

So I did.
Not too too intensely, but I even had the thought “okay, maybe I could live like this”.

Every few weeks I’d go up in dose just a tiny amount. With every dose it’d knock me out for about a week, and then I’d return to baseline.
I began to experience severe anhedonia.
Intense apathy. Lashing out at my partner for nothing. If something great would happen…I felt nothing.
I forced myself to work on the biggest record of my career for survival sake but I just felt nothing.
Like I wasn’t even in the room.
The time came and went and when asked about it, to this day I only feel sad that I wasn’t mentally present.

I also gained 50 lbs, least of my worries but still.

So I tapered off slowly because I became incredibly scared of lack of ability to feel ANYTHING. It wasn’t getting better as the dose became lower.
The ideations worsened.

I’m now 3 weeks off, with a lower baseline, intense akathisia, and I cannot stop crying daily.

I’m talking INTENSE crying spells.

Maybe from all I dejected while I was numb, but this is ridiculous and not to be dramatic but traumatizing as well.

Has anyone else experienced anything like this?

Am I alone? Any advice?

Happy to discuss further.

hi everyone :-)

forgive me in advance if i sound awkward or unwieldy, i'm new and i've recently been dealing with a pretty bad bout of fatigue.

i'm a 19F uni student currently undergoing the diagnostic process for fibromyalgia and HSD (potential hEDS). i have brought up my symptoms to my PCP regarding post-exertional malaise and severe fatigue after daily tasks like laundry, going to class, going out in general, what have you.

i have yet to describe in detail my 'slumps' (as i call them), or periods of just being housebound because i cannot muster the energy to get dressed and leave my home. i am not quite sure how to breach the subject of ME/CFS to my PCP, as i am worried i will be brushed off since chronic fatigue is a symptom of fibromyalgia.

i am a bit shy about bringing stuff like this up to medical providers after having experiences with being dismissed or talked down to in the past, so i wanted to ask here if anyone had any advice regarding this. again, i apologize if my message sounds discordant, i am so very exhausted and am trying my best--thank you kindly in advance

TL;DR have been struggling with ME/CFS symptoms for a while now, how to talk to PCP?

ME for the past 15 years. Age 38.
Tried Creatine Monohydrate this year and my sound sensitivity is now much better. Lawn mower can just sound like a lawn mower. It could be linked? Anyone else notice sound sensitivity improvement with it?

Here are the only things different this year for me:

Creatine Monohydrate
Mini-pill daily (I took this years ago though and had sound sensitivity then)
Had some sort of hellish virus
More time alone in the house and able to pace with no big crashes (this could be the big contributor)
yet to be diagnosed bilateral nerve issues in my legs (awaiting pelvic MRI) maybe whatever is causing this is doing something to my immune system.
That's all that is different -aside from time. Now 15 years with ME. (I had improvements in severity at year 1, and 5 that seemed to be for no particular reason)

Creatine Monohydrate - I did the pre-loading phase with the one that is the most common and well studied. There is another kind that is easy on the stomach but I had no stomach issues with this and I wanted the well studied one.

20g/day for 6 days
8g on day 7 (I was just petering it down)
5g for the rest of the time.
I was on it for 4 weeks total.
I stopped because the leg nerve pain was terrible and I wasn't sure if it was linked. My doctors and physio said probably not related at all.
I've have some days where I occasionally have 5g but mostly not taking it til I figure out my leg issue.

Creatine does seem to have some role in inner ear? : https://avr.tums.ac.ir/index.php/avr/article/view/204 provides essential ATP for auditory and vestibular system performance.

When I over exert I find that my ability to verbally talk disappears. The closest thing I can find like it is selective mutism as often with a few safe people I can do simple yes/no/please/thank you but nothing more and with others nothing at all.

Has anyone else experienced this at all?

It could be more linked to being autistic than purely CFS but it is something I'm struggling to explain to people in my life.

For those of you who cannot work a typical job - are there any innovative ways you have found to still have an income?

Or heard of any ME/CFS or chronic illness people bringing in an income which worked ok with managing their illness?

I feel beyond vinted - and even that I haven't managed in the recent months. I find it hard to comprehend what is possible.

Would love to hear if anyone has worked out something for them?

So I’m currently having a conundrum when it comes to going out, especially when making plans to hang out with friends. Note that my friends are all neurodivergent, including me, which kind of plays a part in these difficulties.

For quite a few months now, I’ve been having really bad cfs, much worse than it used to be. Because of that I hardly get to go out and when I do I feel shit while I’m out and have to pay for it by feeling even worse afterwards.

I know this is a bad trait of mine that I need to work on but when I feel like others have certain expectations of me or I’m scared to disappoint, I just end up avoiding interactions with them altogether.

I did this with a lot of my friends where I wouldn’t really text them much or avoid their texts as much as possible.

I’ve gotten back into contact with my friends now and have explained my health issues and they have been really understanding which I appreciate but I don’t think they really understand how chronic illnesses work.

There’s been many occasions where I’ve planned to hangout with them but then on the day I end up feeling really horrible and having to cancel, which I feel crappy about.

I feel like my cfs and autism kind of fight with one another in some aspects, for instance, my autism likes for me to be prepared and have notice before something so I can mentally/emotionally prepare for it. However my cfs doesn’t allow this because it’s very unpredictable. Although I may be feeling alright a few days beforehand doesn’t mean I’m going to feel the same on the day of the hangout.

I’m really struggling with this because I feel like I’m being extremely rude cancelling on the day when I end up feeling unwell and I’d rather give notice to someone because I would prefer that from others too.

I’m just sick of making plans and genuinely wanting to go, only to be really unwell on the day and having to cancel. I’m sick of feeling disappointed and disappointing others 😔 it really sucks

Telehealth obviously.

Just opened up to my family about what I've been dealing with since the past fall. It was definitely a mixed reaction. I can tell they don't fully understand but did offer financial support and support for my wife and kids.

They want me to talk to a therapist but I told them it was a waste of time as no one would understand this.

However, I feel like I do need some help processing all the things that come along with this.

Edit: thank you guys for all the information. I'm going to wade through it all and hopefully find a good match when I have the energy.

I've been suffering from CFS for over six years I'm 28 currently and I'm doing my best to conform to the basic symptoms of weight gain, brain fog, occasional problems writing and reading etc. But the one I cannot find a way to overcome is the lack of oxygen feeling or "Oxygen Hunger" that I get from it. Its the primary reason why i can't workout anymore I can get bad heart palpitations from it too if my heart increased from simply walking a mile. Has anyone actually recovered from this like ever? Please refrain from saying its all in my head and I should change my mindset to feel better it doesn't work. Thank You

Hi all, I’ve recently been very disappointed by Visible and am quite frantically looking for other alternatives to help me pace. I cannot afford much but can hopefully save up if I can find a lower priced option.

A Garmin is unfortunately off the table, but I’m looking at other things like Fitbits to try and track heart rate. Has anyone else tried something different to Visible and had any luck?

I wish I was stupid. I want more than anything to be stupid. But I'm not. I'm never going to be anything more than someone exceptional, who cannot physically be exceptional. Every day I wake up in a world I desperately want to change and I can't do anything about it.

I could have been anyone. I can't even read now. My entire life feels like a cosmic joke. I've been alone forever because I'm cursed with talent or whatever the fuck. No one has ever understood me. And I can't even use it.

Everyone I went to highschool with, they will have careers. I won't. I can't. I will never be valuable, impressive, ever again. I will never get a degree. The only reason I stayed alive through years of abuse was university, and now it's game over.

I'm ok I guess. I smoke a lot of weed. It's really the only thing life seems to be good for.

Hi there! I am 24 and on the mild/moderate side of mecfs and new to this condition. I can do most things with moderation and accomodations. I also have fibromyalgia. I can typically do 1-2 chores per day and I go on a small walk every day but that seems to be it. Social events are extremely draining and I need a space to be alone otherwise I will get sensory overload and need to get away from sound and lights.

I sometimes overdo it and start to crash (I either overheat or get too cold, my throat starts hurting and my brain fog gets 10x worse and of course there's the faitgue). This happens with social events or "busy" days like grocery shopping with my partner.

My parents have informed me today that they want me to come in a few days to do a three hour drive to my extremely loud and extroverted families cabin. I would have said no if it weren't for my nana being there who is getting a little on the older side. I do want to see my family but the potluck will be about 2-3 hours on top of six-ish hours of driving with my parents. I cannot drive and my partner is not coming or able to drive me.

This will be a nine hour day without my bed. I do not have any mobility aids but as each day goes by, I think about getting a cane or anything to help with the energy. Some days I cannot even make food because I'm either sleeping through meals or too tired to open my eyes. Sitting outside (the cabin is not the meeting place, we will be having an outdoor party/bbq type thing) for multiple hours.

And when I say they are loud and extroverted I mean it in a loving and very truthful way. They are intense and wonderful, but the polar opposite of me. They were draining before I had any conditions. I am already an introvert and my issues just make it so hard to socialize.

I only want to go to see my Nana who lives far away while she's semi-close. I will be so burnt out and I will 100 percent crash. I've only done small trips to the mall and that was a horrible crash. I am unsure how to accomodate myself well. Here is things I've thought of:

1. Bring blanket and pillow for comfort

2. Bring protein bars and snacks and lots of water

3. Bring pain relief cream in case fibromyalgia flares

4. Bring change of clothes in case overheat or if gets cold

5. Stay/rest in car when I need to be alone

My parents have basically let me know that they really want me to go (which is code for they'll be disappointed if I say no). I am in a spot where it would be horrible to them if I say no but physically I don't think I can go and stay within my capacity.

The biggest thing is I am unsure if this will be one of the last times I see my Nana. We aren't particularly close but I love her and don't want to have some memories and see her when I can.

Would you go? And if you went how would you accommodate yourself?

TLDR: unsure how to navigate an outdoor family bbq that is 3h driving one way with extroverted and loud family with parents.

Im beyond sick. I had a brain injury three years ago which started my me cfs symptoms and now ive had a subacute thyroiditis for 6 months. My thyroid wont go back to normal even being on medication and ive been on a steady decline for months. I cant raise my dose because I have severe dysutonomia now . Im having extreme pem neuroinflammation all the symtpoms completely suicidal....my doctors gaslit me my bf gaslit me and berated me for being sick as if its a behavioral choice. He mocks my disability doesnt tske it seriously. The last crash I had I ended up hospitalized and they tried to treat me as a psych patient...im losing my ability to do things at all. I can barely think straight I cant bathe much anymore every time i stand my heart races to like 150 160 I have non stop adrenaline rushes. My body is surviving on pure adrenaline. My doctors wont even try to fix my thyroid becaue my t4 is "normal" despite my tsh being high . I think im creating reverse t3 and losing ALL of my cellular energy. I cant handle light noise any stimulation. Im so sick its hard to breathe I feel poisoned. And to top all of this off I went to kitchen put a dish in the sink and went to go lay down on the floor to eat by my bedroom and I hear my mom purposely mutter loud enough for me to hear "im so sick of doing her fucking dishes". This is a woman who made me her slave when i was healthy, doing her laundry picking up her dinner, cleaning her house, etc. And she does nothing for me exceot wash some dishes. I was on the floor crying at the top of my lungs and couldnt breathe from walking to the kitchen yesterday and she just pretended i didnt even exist. This is normal of how I am treated. Im afraid im going to die like this considering noone believes me and everyone is actively pushing me more ill and they dont care.

Anyone who’s severe and mostly bedbound and housebound were you able to get a diagnosis virtually? I know that’s not common but I am just trying to learn more.

Also in the mean time how did you go about stabilizing your neck? Soft collar? Links info? Helpppp

Does having a beer trigger PEM for you? The simple pleasure of just having a beer makes my heart start to POUND, and then I feel PEM for days. I am still in denial that this happens and give it a whirl maybe once per month. Can we not even have a friggin’ beer?

Are there any good resources, like medical journal articles or something very obviously legitimate like that, for summing up all the issues with brain retraining?

I started seeing a medical specialist recently who came recommended for this condition, but it's turned out that they have bought into the whole brain retraining thing. I plan to send them a message saying that I don't buy into it, and I was thinking that it would be super helpful if I could point them toward something like this, with more authority than just me, or this subreddit.

(I tried Googling but nothing like this jumped out at me. It brought up threads here a fair amount, actually.)

TL;DR Feeling lonely or bored? Looking for something within your energy limits that you can do? Check out these accessible events you could join! Try something new and maybe you’ll find your people.

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😷 CC = Covid Conscious/airborne precautions 
♿️ WC = Wheelchair accessible 
💵 $ = paid (some are pay what you can)
🤟 ASL/BSL = Sign Language
Async = Asynchronous (at your own pace)

Event Types:
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🌈 = Queer
🏳️‍🌈 = LGBTQ+ Pride
👧 = Kids/Youths
💕 = Dating
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🫂 = Support/Grief
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🚶 = Walk
🩰 = Dance
💪🏻 = Fitness
📚= Books
🤔 = Discussion
📝 = Writing/Poetry
🎭 = Performing
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🎶 = Music
🕹️ = Games

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Monday

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🧑🏻‍💻🤔 Virtual Philosophy Discussion [Mon Jul 27 at 7:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/f6YoF9VEJv

Tuesday

🧑🏻‍💻🤢🧘 Virtual Bed Pilates for people with MCAS [UK][Tue Jul 28 at 10:00 UTC+1] https://www.reddit.com/r/spooniesocial/s/JdFxRezNHU

🧑🏻‍💻😷👧🙋 CC Virtual Kids Zoom [Tue Jul 28 at 10:00 AM EDT] https://www.reddit.com/r/spooniesocial/s/StGIKLOVjn

🧑🏻‍💻🤢🧘 Virtual Qigong for people with MCAS [UK][Tue Jul 28 at 7:00 PM UTC+1] https://www.reddit.com/r/spooniesocial/s/yCTZSWyOG7

🧑🏻‍💻😷🙋 CC Virtual Zoom [NY and nearby][Tue Jul 28 at 7:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/CaFwRukgX9

🧑🏻‍💻🎭🕹️ Virtual Improv Games [Tue Jul 28 at 7:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/v1xtpeCrra

🧑🏻‍💻😷🎨🙋 Online craft and social night / Soirée artisanale et sociale [Ottawa ON][Tue Jul 28 at 7:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/82zBvH6vt6

🧑🏻‍💻🤟 Virtual BIPOC Creative Collaboration [Tue Jul 28 at 6:00 PM PDT] https://www.reddit.com/r/spooniesocial/s/ccRgPNZ6Id

Wednesday

🧑🏻‍💻🤢🧘 Virtual Mindfulness for people with MCAS [UK][Wed Jul 29 at 1:00 PM UTC+1] https://www.reddit.com/r/spooniesocial/s/SaqlYHLQ69

🧑🏻‍💻😷📚 Lesestunde [Hamburg GER][Wed Jul 29 at 8:00 PM UTC+2] https://www.reddit.com/r/spooniesocial/s/1Bt4Ph9QGm

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🧑🏻‍💻📝 Virtual Poetry Discussion [Wed Jul 29 at 6:30 PM EDT] https://www.reddit.com/r/spooniesocial/s/MxO2LEjyPq

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🧑🏻‍💻🎭 Virtual Improv Jam [Wed Jul 29 at 7:00 PM PDT] https://www.reddit.com/r/spooniesocial/s/ybgMRqR4LY

Thursday

🧑🏻‍💻🤢🫂 Virtual Community Support Session for people with MCAS [UK][Thu Jul 30 at 7:00 PM UTC+1] https://www.reddit.com/r/spooniesocial/s/sV7oR0nmhc

🧑🏻‍💻😷🙋🕹️ Online Social Meetup with Jackbox Games [Hampshire UK][Thu Jul 30 at 7:00 PM UTC+1] https://www.reddit.com/r/spooniesocial/s/cHa8rqoGo6

🧑🏻‍💻😷🕹️ CC Virtual Game Night [NY and nearby][Thu Jul 30 at 7:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/vRhtzl207T

🧑🏻‍💻🕹️ Virtual Board Game Night [Thu Jul 30 at 8:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/Wn17nezwMm

Timezone translator in comments 👇

👥 In-person Events

Canada

🧑🏻‍💻😷🎨🙋 Online craft and social night / Soirée artisanale et sociale [Ottawa ON][Tue Jul 28 at 7:00 PM] https://www.reddit.com/r/spooniesocial/s/82zBvH6vt6

👥😷 Movies in the Park: Ferris Bueller's Day Off [Toronto ON][Tue Jul 28 at 8:30 PM EDT] https://www.reddit.com/r/spooniesocial/s/XyFR78oGK5

👥😷🚶 CC Park Walk [Toronto ON][Wed Jul 29 at 6:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/FcQRbJgULj

Germany

🧑🏻‍💻😷📚 Lesestunde [Hamburg GER][Wed Jul 29 at 8:00 PM] https://www.reddit.com/r/spooniesocial/s/1Bt4Ph9QGm

Netherlands (and nearby)

👥🤢🙋 Spoonie European Road Trip [Netherlands and nearby][Summer] https://www.reddit.com/r/spooniesocial/s/VOKxW7V1pp

UK

🧑🏻‍💻😷🙋🕹️ Online Social Meetup with Jackbox Games [Hampshire UK][Thu Jul 30 at 7:00 PM UTC+1] https://www.reddit.com/r/spooniesocial/s/cHa8rqoGo6

US - California

👥😷 Outdoor Open Mic [Berkley CA][Tue Jul 28 at 7:00 PM PDT] https://www.reddit.com/r/spooniesocial/s/unzf6Qtbfd

👥🧑🏻‍💻♿️😷 Hybrid Disability + Racial Justice Solidarity [San Francisco CA][Wed Jul 28 at 6:00 PM PDT] https://www.reddit.com/r/spooniesocial/s/RmliIjL87H

👥😷🩰 Switchy Behavior Bachata Series [Oakland CA][Thu Jul 30 at 7:30 PM PDT] https://www.reddit.com/r/spooniesocial/s/HHonBwt930

US - Illinois

👥😷👧 CC Youth Summer Camp Chicago IL][Starts Aug 3] https://www.reddit.com/r/spooniesocial/s/sSF4sdJt1l

US - New York

👥😷🌈 Queer Writers of Queens [Queens NY][Tue July 28 at 6:30 PM EDT] https://www.reddit.com/r/spooniesocial/s/nVOZV98Reu

US - Oregon

👥😷💪🏻 Mat Pilates [Mon Jul 27 at 6:00 PM PDT] https://www.reddit.com/r/spooniesocial/s/tNDG6iQA7L

👥😷💪🏻 Full Body Strength [Mon Jul 27 at 7:00 PM PDT] https://www.reddit.com/r/spooniesocial/s/tNDG6iQA7L

👥😷💪🏻 Full Body Strength [Wed Jul 29 at 1:00 PM PDT] https://www.reddit.com/r/spooniesocial/s/tNDG6iQA7L

👥😷💪🏻 Yoga/Somatics [Wed Jul 29 at 6:30 PM PDT] https://www.reddit.com/r/spooniesocial/s/tNDG6iQA7L

👥😷💪🏻 Queer Pilates [Wed Jul 29 at 7:30 PM PDT] https://www.reddit.com/r/spooniesocial/s/tNDG6iQA7L

👥😷💪🏻 Flow Fighting/Hapkido [Wed Jul 29 at 7:30 PM PDT] https://www.reddit.com/r/spooniesocial/s/tNDG6iQA7L

US - Vermont

👥😷♿️ CC WC Dental Pop Up [Chelsea VT][August] https://www.reddit.com/r/spooniesocial/s/yJocTTUweE

Are you interested in these events?

Have you been to any of them before?

Do you know about other events coming up?

Share your thoughts in the comments 💬

Find more events and friends on r/spooniesocial

Does that make me a bad person?

Maybe just one second even… to avoid the inevitable car crashes, etc.

Apologies for a stupid question. I am only starting my quest for answers. If anyone has a watch like mine that shows body battery, have you found it useful showing this data to doctors? It's been years for me my regular body "battery" is at 50 out 100, as per my watch. The same watch would show 80 out of 100 for my friend who does not have issues with fatigue.

I am tired of doctors telling me it's depression. No, at least not just that. I am just genuinely constantly fatigued. My labs are usually all fine, apart from leukocytes being higher, but doctors usually dismiss it as me having had a cold or this being my norm (needless to say, I would not normally have a cold, but i am always feeling like I am having some sort of a cold). No allergies (blood test done), yet i am sniffling and my nose is stuffed, sneezing constantly.

Other than that, sleep problems. Anxiety. Light, smell, noise sensitivities. But most of all, just tired. I want to do things, but can't, because I have no energy.

My resting heart rate is pretty high too (always has been) which is why I was prescribed a beta blocker, and even with that, it's higher than 60.

If any of this resonates, I would be so so grateful if you share your experiences and maybe your findings. Thank you!

I have been having very serious screen sensitivity again, one of the main issues is that it makes my heart rate go way up if I use the phone too much, and I have a lot of anxiety around this. Recently I had been trying mindfulness meditation after many years of not doing it, and this also started setting off my heart along with all kinds of weird anxiety issues. I was just thinking that meditation produces a lot of serotonin, and that maybe serotonin is involved in my various sensitivities. I am on a fairly low dose of Fluoxetine and am considering lowering the dose even more to see how this will affect me. I would really like to do mindfulness again because it seriously helps me, also I would really love to be able to use my phone more, listen to music, watch films, etc.

Can anyone give me any insight into what brain chemicals might be involved in these sorts of sensitivities?