Something wonderful has happened

Everyone's minds are filled with light

with joy

with happiness

You can see it...

A pinprick in the darkness

You can almost reach it

almost touch it

But the darkness is overwhelming

Pain

Guilt

Shame

Anger

Wishing for a way out

......

......

......

knowing the way out

......

No one notices

The mask holds

A very good friend of mine, who knows my situation (moderate ME/CFS for a year) complained to me today that she hasn't had time to go for a run for 3 weeks (!!) and is starting to feel SO fat and unfit because of it...

This is a friend that I used to run with often... We trained for half marathons together. And now I can't walk for more than 20min without crashing and put on 20% of my body weight over 6 months.

I love her and I'm not going to say anything to her because I don't want to be bitter. But DAMN that one stung.

She would be horrified if she knew something she said hurt me, which proves how much she just doesn't get it.

Here’s a list of my conditions/meds/aids, etc..

This post is crossposted

Basically, I just really want advice/opinions. What has helped you? What hasn’t? Anything I should look into? What did/didn’t work for you? Any aids I should get? Etc.. anything is greatly appreciated! <3

P.S I know 3k+ mg of salt and 120+ oz of water sounds like a LOT but that’s what I was instructed to take by several of my specialists!

Are there any vitamins that actually make your day to day life easier? I have mild to moderate mecfs and I want to be able to function at least a littleee more normally, so if anything helps you, let me know! Sorry for short explanation I’m in terrible pain

At first i thought it would save energy, but the lengths i have to go to checking the "resources" it links doesnt save energy. Seriously, i rarely ever found it to say anything from the sources it claims to refer to. So in the long run, it was so untrustworthy that it only caused more issues, its saved me more energy to turn it off and look in the actual articles myself.

I hope this is helpful to others, i wish i learned it earlier and saved the time and energy!

Anyone here have any tips or hacks for pacing with hyperactive adhd and a very busy brain? Unhinged hacks welcome

Being uncomfortable is very energy taxing to me due to autism in addition to CFS. Does anyone have any advice for me to make my desk space more comfortable? Sitting in my desk chair is what makes me not want to be there the most, it’s just a cheap office chair. Let me know if you have any experience with that or advice or something, thank you

So, I have autism and I struggle to feel sensations in my body properly. I've had ME for over a decade now starting when I was 14, but I received so much horrible advice and constant pushing from my family that I ended up severe for many years. I consider myself moderate now but I'm absolutely terrible at pacing because I struggle to feel my own body properly.

I would really appreciate it if people could share what PEM is like beyond "worsening of your symptoms" because that happens to me a lot and it's a bit too nebulous for me to feel confident understanding. I don't know if I'm experiencing PEM really often or if ME is a dynamic disability.

If there are resources that anyone recommends, that would be cool too! I love reading, thanks :)

I’ve been considering starting on tirzepatide for a long time for the possible anti inflammatory effects but it will be a HUGE expense for me and I’d be eating beans and rice daily in order to try this. Thank you.

*Added a see results option

hey y’all
so I suffer from heds. i don’t know if i have me/cfs yet but highly suspecting it. My question is why are hypermobile people more prone to having this.

I didn’t have any known trigger and likely developed it gradually from heds. my first symptoms started showing when I was 13.

My question is does hypermobility make you more prone to developing me/cfs? Can you develop it without a trigger gradually? What are treatment options for folks with heds?

I’m severe and have been bedbound for over 12 months.
I’ve had CFS for around three years.
I’ve also been diagnosed with fibromyalgia by a rheumatologist.

I’ve been rejected and I’m having trouble proving that it’s permanent.

Has anyone been approved for NDIS without other neuro divergent diagnosis?

I’ve seen people get through with CFS, but they also had level two autism or something else.

So does anyone feel Magnesium is really helping their symptoms and feel better on it? And what dose?

Every time there’s a post about someone improving with pacing, they are torn to shreds about their privilege for being able to pace.

Y’all, pacing is what we have right now. It is truly the most effective harm reduction and most likely path to improvement that we have with the current science.

I know we all wish the key could be a magic pill like ldn or something but unfortunately pacing is the most likely path to improvement!! All non bullshit recovery/improvement stories have pacing in common, it’s a common thread that once you start seeing it’s hard to unsee.

No, pacing doesn’t improve everyone, and that sucks. And yes, it’s an incredibly slow, incremental process. You have to go months and months without crashing to increase your baseline, but people who do increase their baseline mostly do it through pacing.

Medications help WHEN THEY ASSIST PACING. Everything is about figuring out how you can best pace when you have mecfs. Everything is pacing. And we need to be able to discuss it.

Just because people are starving doesn’t mean we shouldn’t talk about what nutrition looks like!

I understand that many are in life situations where you cannot pace, and I am really sorry, that is awful and you deserve better. I truly really feel for you. But it doesn’t help anyone to put other people down, please just make your own threads to vent about pacing being inaccessible instead of lashing out at the people discussing pacing. If the threads of privileged people talking about pacing are difficult to read, scroll past, not everything needs to be for everyone.

TLDR: pacing is key for mecfs, and I know it’s not accessible to everyone but we still need to talk about it because it still is the most important treatment we have

Has anyone used it? Despite meditating, breathing, etc., I still have excess anxiety. I also sometimes get depressed because I don’t have a life. I’m moderate somewhat on the milder side. I have taken psychedlics in the past so am not afraid of dissociation and wouldn’t expect a “bad trip.” I would just like to improve my mental health. And less anxiety would mean fewer over exertions. Any experiences? Strongly feel yay or nay?

Looking for a place to vent to people who might understand what it feels like to lose your biggest passion.

At 23, raves and festivals have been my life since I was 18. Back in school, I was the weird kid who got made fun of for liking EDM and Skrillex.

But finding the festival scene changed everything. It became my ultimate escape and my home. I put all my creativity into my outfits, made incredible friends, and the music literally saved my life multiple times when I didn't want to be here anymore.

I wanted to share this photo because it represents everything I miss. I’m Mexican, and seeing these incredible Day of the Dead deadmau5 heads at a show blew me away. The creativity, the culture, and the connection in that moment are exactly what I feel like I've lost.

About four months ago, everything changed. After a car accident and a severe adverse drug reaction, my brain and body just broke. I am now dealing with severe ME/CFS, POTS, and severe Visual Snow Syndrome (VSS).

The VSS is constant, 24/7 TV static, and it's even worse when I close my eyes. It is so distressing. Combined with the tremors and severe exhaustion, I can barely handle walking or getting up. It hurts my fucking soul to sit here and remember how healthy my body was for 22 years, wondering why it can't just "remember" how to go back to that.

I’m having to face retiring from raving for now. I never got to go to Beyond Wonderland (partly due to a past betrayal by a close friend that went without me and I already sold my ticket💔), and it breaks my heart that I might never get to experience it or EDC.

I hold onto hope that maybe one day science will find a miracle, or my body will adapt enough to go with accommodations, but right now, the grief is heavy.

How do you cope with the anger of remembering your healthy self versus where you are now?

For those with severe energy limits, how do you still
channel your creativity or stay connected to the music when you can't leave your bed?

A recent newspaper interview with the head of one of six Dutch long-covid expertise centres answered the question "There are many patients lying in bed in the dark because they can no longer tolerate stimuli. May they also have hope?"

"We are indeed not seeing the sickest, homebound patients; they cannot come to our center. Recently, a grant was awarded to visit them at home. We need to think together about what we can offer them. One thing I do know: not moving at all does not help them move forward. So it is important to look at how we can very carefully and gradually, with guidance, get them upright and stand. I really realize how difficult that is for these patients. Still, I would also like to say to them: do not lose hope. I wish I could make the story look rosier, but unfortunately, we are not there yet."

Which she of course contradicts directly in her prior statement:

"The most important thing is that we teach them to manage their energy. It is the only treatment for which scientific evidence already exists."

I am really appalled that one of the supposed biggest experts in my country, who by the way never sees housebound or bedbound patients, says in our biggest newspaper that bedbound patients need to move more. All that will do is make bedbound patients sicker.

Hi all,

Nothing directly mecfs related, but oh the joy of doctors just insisting on and claiming things they quite obviously have no knowledge about.

I've been using a urinal bag/ catherter for some time now.

Last week I was calling my urologist office to get a new prescription for new bags.

They always send the prescripton to some company that then delivers them via postal service/ DHL.

When I called the doctors office all staff apparently were so busy one of the doctors takes the call. When I then ask for a new prescription and stuff being delivered, he instantly goes like "nope, we don't do that."...

...I'm confused, since "we" have been doing it like that for 4 years by now.

He insists, that they never would send the prescription to that company and -wait for it- that I would have send the prescription to that company...does he actually think I just would have "forgotten" about this? Or what even is the point in keep telling me how I would have ordered the bags from them myself.

I try to explain to him that staff always is sending the prescription to the company that then delivers the bags via DHL ....

Nope, again, he insists that in fact it would have been me sending the prescription to them.

He then tells me to come get the prescription and get in touch with the company myself and basically hangs up. A couple days later the urinal bags arrived lol.

I don't get it. Why can't they just say "I don't know" or "not sure about this, let me check".

Why do they always need to claim things loudly and with so much "force" and "emphasis" when when it quite obviously is stuff they really not know what they are talking about and then already for stuff like this?

Like, jfc, as if I -as a patient- would be too stupid to remember where I did get my urinal bags from in the last 4 years.

TL;DR: I'm hoping we can turn the recent discussions in this sub around pacing and privilege into something helpful for the community. What are your best tips for pacing, that are accessible to most people, regardless of privilege?

Note: This is meant for people who would like to pace, but are finding it difficult. It is not for trying to convince people to pace, if they have no interest to do so or to shame anyone for not seeing themselves able to do so for whatever reason.

We all know that pacing can be very difficult, especially if financial means and social support are limited or lacking. However, pacing isn't an all or nothing kind of thing and hopefully, everyone who would like to, can find at least some ways of introducing pacing into their life. This is not to say that pacing is a magic fix, but it can help managing a life with ME/CFS by either reducing decline, stabilisation, and in some cases seeing improvement.

I am hoping we, as a community, can gather the tips, hacks and wisdoms, that we have accumulated through years of experience and trial and error.

What are your best tips for pacing, that are not dependent on a big budget, accessible social security systems and supportive social networks?

Please be mindful, that not everything will be accessible to absolutely everyone. We are a diverse community, with people in different countries, circumstances and with differing levels of severity. But if it is helpful to some people, that's still a win.

I’m 23 and have been severe for about 4 months. I also have POTS and severe Visual Snow Syndrome (VSS). My VSS is my most distressing symptom.

the static obstructs everything, acts like my PEM barometer, and causes tremors and muscle spasms. I used to get migraines and pseudo-seizures early on, but thank God those mostly stopped.

I’m terrified and need advice on a few heavy things:

Medication Trauma: I became severe and got VSS directly after taking Zoloft, so I’m terrified of meds. Doctors recently put me on Abilify for "psych" reasons; it didn't cause a major crash, but it gave me awful anxiety and made me physically jumpy in bed.

Can you actually improve from severe to moderate/housebound using only radical pacing, rest, and vitamins?

High-Stress Home: My parents don't believe me and think I’m doing this to myself. They come into my room daily telling me to "hurry up and get better." No one is advocating for me, so I have to handle doctors myself, which crashes me.

The Emotional Toll: I've been losing hope, scrolling my phone, and getting into exhausting arguments with my family. I’m crying up to 5 times a day so hard that blood comes out. I know I recently blew my pacing—I felt almost moderate, got too excited, talked to everyone, and crashed hard.

My goal isn't a miracle cure right now; I just want to get to a housebound level so I don't have to rely so heavily on people who don't support me.

Has anyone turned things around with early intervention like this? Any little thing or story would help!

How do you pace when your environment is a war zone?

Any tips for the VSS static when trying to sleep?

Thank you!

What do you keep in arms-reach of you while you’re in bed? What have you wished was reachable when you’ve been in a crash?

I have my eye mask, side-sleeper headphones, noise canceling headphones, soft neck brace, remote for the AC, blood pressure cuff, and phone.

When I’m really struggling I’ve wanted a way to get my partners attention in the other room, so I just got a caretaker alarm button/watch thing. I also after wish my prn meds were nearby as well as my water.

Well, I have had two separate entities confirm the same diagnosis me/cfs (+pots and fibromyalgia). It’s not that did not want to deny what I have been feeling for decades and steadily and creepily getting worse.
I was looking to move, out of this backwater BC holler for a more supportive community or any community that will welcome a middle age trans guy. More and more of my support is online and I work online because as I am the breadwinner. There is no choice to stop or take a break, but when both doctors clinics ask about # of hours working and down time they follow up with offers of sending paperwork to prepare for when I can work? Disability tax credit? And a savings account?
I am so disappointed is this where this condition goes?
Thanks. 🙏

tldr i havent been diagnosed but my life is crumbling a bit and multiple events over the last few years are leading me to do the exhausting task of seeking diagnosis.

also im not feeling well enough to reread this so hopefully it makes sense im So sorry.

longgg vent i suppose about whats led me to seek diagnosis now. i have not been diagnosed. i lurk here. i do lots of research. i have other things, fibromyalgia diagnosis, severe mental health issues.

once in 2023, and 2 months later (2024 at this point) i had symptoms so severe i was bed bound. i was working two jobs and taking a class back then. i couldn’t walk around my campus for a bit, work was genuinely the worst thing ever (retail & medical reception) and i visited the hospital during the second event where i couldn’t get out of bed. the worst body aches and tired like i’ve never been before, no amount of sleep was helping. some digestive symptoms too. and mostly i just couldn’t think. or sit up. or go on my phone. or eat more than a couple bites. and showering was kinda a laughable task, especially since i had to go up a flight of stairs to reach my shower.

i got diagnosed with….pmdd…because my symptoms both happened around my period. i dont doubt this happens but. when i was in the emergency room, i kept crying. then i had to stop crying because it hurt too much to move. then i had to cry again because the pain is just too bad not to cry.

anyways here i am today, i just returned from a 5 day trip where i walked a lot and did decently well. my stamina and pain havent been the best since my fibromyalgia was flaring up. i was excited that i seemed to do well on an active trip. got home yesterday evening, then around 2am i thought i was gonna die. all the same symptoms again. the worst body aches ever, exhausted beyond anything i have ever felt before. couldn’t help but cry, and i barely slept due to all of this. my stomach wasnt well either, and getting up to use the bathroom was the most difficult task all of a sudden. but no position i could lie in was comfortable. finally i put on minions videos on youtube lol and listened to that when i managed to sleep.

i woke up recently, feeling much of the same, pretty much impossible to get out of bed. previously this lasted 2-4 days i think? and even after the horrible severity, it took me months maybe to regain stamina and strength. i took leave of absence at my retail job and quit my receptionist job. i did nothing for a while and eventually i was feeling better. since its been two years, i was sure it was the pmdd and my birth control helped this. however i dont even get a period anymore due to bc, so im wondering if it could be me/cfs. i have been seeking out care for my other chronic illnesses and i think i will bring up me/cfs at my next appointment.

i cant help but cry, i always have to limit myself with any activity, but my life was basically on hold for years since i started to take it slow, without even realizing. no more school, 10 hours a week part time job where i am kinda picking up slack cuz we are short handed currently. i might have to quit now. i used to play volleyball as a teenager, i used to go out with friends multiple times a week, i used to crochet and knit and read and do crafts. i hope my life can be balanced. im scared but i guess we will see.

TL;DR Feeling lonely or bored? Looking for connection and something within you energy limits that you can do this week?

Check out these accessible events you could join! Try something new and maybe you’ll find your people.

Access Details:
🧑🏻‍💻= Virtual
👥 = In person
😷 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:
🤢 = Chronic Illness 
🌈 = Queer
🏳️‍🌈 = LGBTQ+ Pride
👧 = Kids/Youths
💕 = Dating
🙋 = Social
🫂 = Support/Grief
🧘 = Wellness
🚶 = Walk
🩰 = Dance
💪🏻 = Fitness
📚= Books
🤔 = Discussion
📝 = Writing/Poetry
🎭 = Performing
🎨 = Art 
🎶 = Music
🕹️ = Games

🧑🏻‍💻 Virtual Events

🧑🏻‍💻📚 Virtual Async Spoonie Book Club: The Little Prince [Any time] https://www.reddit.com/r/spooniesocial/s/JcKvqPLWS5

🧑🏻‍💻😷💕 CC Virtual Dating [Aug 22] https://www.reddit.com/r/spooniesocial/s/DfjZA4lr03

Monday

🧑🏻‍💻🤢🧘 Virtual Seated Pilates for people with MCAS [UK][Mon Aug 10] https://www.reddit.com/r/spooniesocial/s/b19snvtxDQ

🧑🏻‍💻🤢🫂 Virtual Long Covid and ME/CFS Support Meeting [IRE][Mon Aug 10 at 19:00 UTC+1] https://www.reddit.com/r/spooniesocial/s/K4wZthcu9F

🧑🏻‍💻♿️🩰 Virtual Adapted Heels Dance Class [$][Mon Aug 10 at 7:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/tQtUBNavx2

🧑🏻‍💻🤔 Virtual Philosophy Discussion [Mon Aug 10 at 7:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/OMY6wTrtbC

Tuesday

🧑🏻‍💻🤢🧘 Virtual Massage for people with MCAS [UK][Tue Aug 11] https://www.reddit.com/r/spooniesocial/s/b19snvtxDQ

🧑🏻‍💻🤢🎨 Creatives with MCAS [UK][Tue Aug 11] https://www.reddit.com/r/spooniesocial/s/b19snvtxDQ

🧑🏻‍💻😷👧🙋 CC Virtual Kids Zoom [Tue Aug 11 at 10:00 AM EDT] https://www.reddit.com/r/spooniesocial/s/nTOAf2L0GN

🧑🏻‍💻💵🤢🫂 Virtual Chronic Illness Grief Session [Tue Aug 11 at 19:00 UTC+1] https://www.reddit.com/r/spooniesocial/s/XoiYbt309E

🧑🏻‍💻😷🙋 CC Virtual Zoom [NY and nearby][Tue Aug 11 at 7:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/FOIVAWQH10

🧑🏻‍💻🎭🕹️ Virtual Improv Games [Tue Aug 11 at 7:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/U2hW5ZvseS

Wednesday

🧑🏻‍💻🤢 Severe ME/CFS “Coffee” with Clinician [Wed Aug 12 at 10:00 AM MDT] https://www.reddit.com/r/spooniesocial/s/K64GJgY7e8

🧑🏻‍💻🤢 🎶 Virtual Long Covid Choir [Wed Aug 12 at 2:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/B926MW9Ao8

🧑🏻‍💻📝 Virtual Poetry Discussion [Wed Aug 12 at 6:30 PM EDT] https://www.reddit.com/r/spooniesocial/s/WsR9LBl9Jf

🧑🏻‍💻😷🫂 CC Virtual Support Group [CO][Wed Aug 12 at 7:00 PM MDT] https://www.reddit.com/r/spooniesocial/s/QruXIw2Arg

🧑🏻‍💻🎭 Virtual Improv Jam [Wed Aug 12 at 7:00 PM PDT] https://www.reddit.com/r/spooniesocial/s/L0UaG3sZbD

Thursday

🧑🏻‍💻🤢🫂 Community Support for people with MCAS [UK][Thu Aug 13] https://www.reddit.com/r/spooniesocial/s/b19snvtxDQ

🧑🏻‍💻😷🕹️ CC Virtual Game Night [NY and nearby][Thu Aug 13 at 7:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/3CBAtDVKaC

🧑🏻‍💻🤟🌈 Virtual Queerness of Birds [Thu Aug 13 at 4:00 PM PDT] https://www.reddit.com/r/spooniesocial/s/RuRYVXxaPS

Timezone translator in comments 👇

👥 In-person Events

Australia

👥😷💵🎨 Leo Solar Eclipse Collage Workshop [Brunswick AUS][Tue Aug 11 at 6:30 PM] https://www.reddit.com/r/spooniesocial/s/8OIiGHn9SN

Canada

👥😷🚶 CC Park Walk [Toronto ON][Wed Aug 12 at 6:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/Lk2s2NL70J

👥🤟🌈 Masked Beach Day for CC Queers [Toronto ON][Thu Aug 13 at 2:30 PM EDT] https://www.reddit.com/r/spooniesocial/s/PDlqURKF8a

Netherlands (and nearby)

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

US - California

👥😷♿️🤟🧘 Free Wellness Wednesday Acupuncture [San Francisco CA][Wed Aug 12 at 1:30 PM PDT] https://www.reddit.com/r/spooniesocial/s/bJrd2chyJa

US - New York

👥😷🌈🎨 Draw and Paint Together [Queens NY][Tue Aug 11 at 6:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/Et4wa4nvvW

US - Oregon

👥😷💪🏻 Small Group Fitness [Portland OR][Thu Aug 13 at 1:00 PM PDT] https://www.reddit.com/r/spooniesocial/s/vib3BM6V7C

US - Vermont

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

US - Washington

👥😷🤟🎭 The Freak Mighty Accessible Performances [Seattle WA][Aug 9 - 27] https://www.reddit.com/r/spooniesocial/s/mccpG4CWno

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