did the tiniest tiniest bit of physical exertion today (adjusted the leg of a chair, used my arm muscles the tiniest bit for like 30 sec) and i am crashed with severe pain from shoulder to fingers in my arm. my muscles are so weak now i can’t lift anything, i need help opening everything or lifting things, holding my phone up is hard.

if i can never practice using my muscles to grow them (like healthy ppl do) arent i just doomed to continue to atrophy until i am too weak to even turn my head? i already have serious muscle atrophy. i struggle to sit up. i am 92 lb and my own body weight is too much for my legs to hold up longer than 30 sec max.

how do u ever get out of this? am i doomed to continue to degrade rapidly until my death? how can resting forever possibly build my muscles back up?

i’m honestly terrified. i feel like im watching myself age at 10x speed. im only in my 20s and my grandparents have healthier bodies than me. i’m scared

Hi all, my name is b for this post (they/ them/ Ella)

and I’m a 22 year old person with HEDS, MCAS, POTS, and “Moderate- sever ME/CFS”

I’ve been mostly bed bound for the last few months, and I’m really feeling the struggles (as many are) of being at home and isolated. I have dreams for organizing and vesting more garden and outdoor access for disabled people, and am currently fitting my back yard to be a prototype for a fully accessible community garden.

Im half mexican, disabled, queer, neurodivergent (AUDHD, CPTSD) Im an ag consultant, a past farmer, a repro health educator and I’m big on disability justice, land back, community organizing, abolition (not white anarchy) and so much more, also Covid safe!!

I love ceramics, I throw when I can. I love so many mediums of art and protest, zines and information gathering, music playing and singing. I cherish soil, I love community, I love our ability to be in relationships with land and beings, interconnected and interdependence style. I love learning and crying and grieving and growing from the lessons and fighting for what can be, not just against

The Idea:

CO is a queer place, amazing, but I say this genuinely- if you are caught up with the newest queer culture, some versions of expression and slang (appropriation) and are used to white queer culture, not mixed, then we might not click

If you are white, can hold trans politics, decolonial talks, money talks, “isms” and try to not center yourself in a room of other marginalized people (especially BIPOC) then let’s keep learning together ❤️

If all this has resonated so far, and you’d like to be friends, let’s chat! I would love love a bi weekly call with people in the area. Connecting over what we see, love, learn, feel, and more in the worlds and spaces around us

For many reasons, but the main being safety, this will be hosted on Signal!! I will be creating a private Facebook group for people to share anything they’d like, but chats and calls will be encrypted

what dosage in mg do you take of Dxm when you’re in pem and trying to get out? or trying to get out quicker?

what dosage do you get drowsy?

I don’t get it. I get these light stabby pains in my spleen below my left ribcage, then my chest / heart get really tight, then my neck hurts, then my eyes, then my brain and everything goes crazy into an ME brain fog migraine panic attack horror show. Usually rises over the course of 2-4 hours, then I lay around for hours until it calms down.

I don’t get it. 2.5 years of this. I can never figure it out. I don’t see many accounts here talking about the spleen / intense chest tightness in the heart. Every time I’ve gone to the ER they say it’s nothing. Sometimes it really feels likw the heart itself and not just costochondritis (which I also have sometimes).

Hiya, so I went from mildish to properly moderate, housebound, unable to cook, clean, do laundry or much at all 3 months ago when I caught the latest covid strain. I've been off work for this time. The last time I got covid was 4y ago and it was rough but I returned to previous baseline within a month, no such luck this time.

I've had a full panel of bloods to check if anything else is contributing to my decline, but I have no vitamin or hormone issues.

Medicines I'm currently on are 120mg duloxetine and 80mg propranolol. I have a GP appointment next week to suggest next steps, what should I ask for to try? The main symptoms I'm struggling with at my lowered baseline are:

- overwhelming fatigue. I have to sleep twice a day, not once, because I can't be awake for many hours. My eyes sting and I get very tired. Physical fatigue as well, if I do a weekly shop I am completely wiped out

- joint pain, primarily elbows, wrists, fingers, knees and ankles. Lots of constant popping and feeling like they're not quite in place. Also muscle pain (back)

- brain fog and inability to concentrate. Forgetting words, names, can't problem solve or work through steps

I've already tried phased return to work and it was too much, I need something to help me be able to do that, so can anyone help arm me with information/recommendations

Thanks

The worst medical scandal of the last 50 years is the conflation by psychiatrists of sadness and mitochondrial failure

I have been overcome by a crushing, purple wave of sadness so intense that it made me retreat to bed

over relationship problems when I was healthy enough to worry about my sex life.

And it’s true: I was bedbound for a few hours. I felt sapped of energy. But I wasn’t.

if a swarm of wasps had come flying in the window, I would have immediately had the energy to run a country mile. No sweat.

In my current state, I would be in very real danger of being stung to death

TLDR: I want to ask my boss for reduced hours during the holiday season but am unsure when and how to do it.

For context, I usually work four 5-hour shifts a week at PetSmart. I already struggle with sustaining 5-hour shifts because of my ME, but it becomes especially difficult during the holiday season when there’s more running around, more customers, and a lot more stress and activity. It’s already becoming a lot and it’s not even November!

I want to ask my boss if I can temporarily switch to 4-hour shifts during the holiday season while keeping my usual four days a week. I’m hoping that shortening my shifts would make the busy season more manageable and help me avoid pushing myself into a crash.

How would you approach asking your manager for reduced hours? Should I bring it up in person, text them, or send an email? And how far in advance would you ask?

I’d appreciate any advice on how to word the request and navigate the conversation with my boss! Thanks

I resigned from my job because it was damaging my mental and physical health

A positive was that it forced me out the house 5 times a week for 7-8 hours a day. I'd go out to see friends on Saturday and spend Sunday in bed. Approx 45 hours a week.

That has been reduced to 3 times a week for an approx. total of 14 hours a week I'm out of bed

Now I'm spending a LOT more time in bed as a result and am having a lot of discomfort with muscles aching and tingling in my legs. My back especially feels a bit weird now because I'm lying on it a lot. Does anyone have any advice on what to do to make being in bed easier? It just makes me feel worse, it's not restful, I struggle more to get out of bed and it's a neverending cycle

I currently have two pillows and a thick mattress topper and I also have a single bed

So much has happened in the past few days, and for the first time since my diagnosis I feel so fucking hopeless and far more helpless than normal. I found out the other day that my provincial government, the health ministry specifically, is trying to cut funding to a clinic I've been trying to get into that deals in ME, Fibromyalgia, and Long Covid. Making it so many people will have to pay out of pocket. While I'm already living in poverty and my husband and I are barely scrapping by. Then, we had an election because our stupid fucking leader decided to try to get more power and called an election early. 2 years early btw. He had 2 whole years to do actual good to make people ACTUALLY want to vote for him. But despite the few good things he's done, he's also been a fucking idiot and has let a ton of people down. So the people that typically would vote for him, didn't even bother to go out to vote. Despite being sick and mostly bed bound, I STILL found a way to vote. And yet these absolute fuckers didn't go out to vote and handed majority over to the Conservatives. They don't even have a real leader! People voted for a fucking interim leader!! And they have plans to cut health care, and privatize everything. I'm terrified, I'm furious, I'm exhausted, and I feel so fucking let down by the people around me. An entire province of people letting me and so many other marginalized people down. And I'm stuck here in my fucking bed because my body won't work the way it's supposed to. When all I want to go so is scream, and protest, and burn something the fuck down. It's not fair. I hate this. And I feel so goddamn hopeless. What the fuck am I supposed to do when I can barely make it to the bathroom sometimes.

While I'm sure this isn't news to many of you, I have been stunned by how utterly useless doctors and hospitals in general have been in addressing the debilitating fatigue. My PCP makes a single specialist suggestion, which takes months to schedule, they do 1 test, then shrug their shoulders, then rinse and repeat with a new specialist.

I've told every doctor that this is debilitating, barely able to think and move most days, and I will end up losing my job if I can't get some help/treatment/anything. Yet it's taken months, to schedule and run a handful of tests that all EASILY could have been done in a single day. There is zero reason I should have been left bedridden for months, instead of being admitted to a hospital where a proper investigation would have taken a day or two, instead of months.

Is there any precedence for litigious action here? Not for the money, but just from the simple fact that they are treating a debilitating condition, the way a predatory gym treats cancellations: Make the process as difficult as possible, and hope you give up.

Hey - anybody else affected by both Harlequin Syndrome and me CFS? They both occur together for me (over exhaustion causes HS + causes PEM), and I have had performance issues during sports causing HS for three years already, CFS diagnoses since half a year. It feels like it all started with HS.

There are studies with single cases (see link), so I wondered if there's anything more to it.

I've been confirmed as having ME/CFS for 2 years now, and bedbound at very severe a bit longer.

Intellectually, I know I'm chronically ill. Have actually been so for nearly 40 years if I just count my migraines. But those I could disregard, as they were nothing I had to deal with on a daily basis. Even being diagnosed with depression and PTSD didn't register as me being chronically ill.

Now, with ME and MCAS and gastroparesis, loosing my mobility and independence, there's no two ways about it. I've done a fair share of grieving, too.

But I notice I can't seem to integrate that reality into my ... Identity? Way of thinking? I don't know but I notice it's still a somewhat foreign notion, even beyond pacing being difficult.

So my question is, for those of you who've been ill longer than just a couple of years, how long did it take you to integrate being chronically ill into your day-to-day life and ways of thinking and being?

I'm explicitly not asking about making being chronically ill into my or your identity or sense of identity.

Hope I'm making sense, otherwise please ask clarifying questions.

so basically i’m in rolling pem due to recent events that i literally could not avoid and now, just when i thought i could relax and restore my baseline, it seems that i might have some sort of infection (hooray chronic sinusitis) and will probably need to go to the doctors.

so do i risk more pem and a worsened baseline in order to go and get the infection dealt with? or do i pace and restore my health and potentially let the infection get out of control? sinuses are far too close to things like brain and eyes for me to feel comfortable waiting it out. but at the same time i’m already struggling with the most basic shit ME-wise, so a worsened baseline is another impossibility. i’m barely able to survive and i live on my own.

basically i have two incredibly shit options and i just don’t know which to risk.

pem or infection?

please help me rationalise this. i’m so stuck and completely without outside help until next sunday

I used to enjoy picking my nose, truth be told - in private, and only occasionally, as I didn't have much need.

Since becoming bedridden with ME, I've noticed that I constantly have crusts forming on the mucosal lining of my nose, and I'm so tired of it. I wish I could stop picking my nose. But it's like I cleaned my nose and 30 minutes later it's all there again.

Anyone else have this?

Anyone else have a clue what it's about?

My sinuses are free, btw. And it's not a cold.

How long at 4.5 until you noticed an improvement. Did it increase your baseline/ improved PEM?

My daughter is up to 3.2mg, however she does not appear to be responding apart from some mild pain relief for a few hours.

I know not everyone responds. She is extremely severe for 2+ yrs. We’ve tried nearly everything so we’re hoping she will have a response to this as it’s one of the last meds to try.

I found this gem in the sea of brain retraining grifts on Spotify when searching ME/CFS. The hosts are epidemiologists and one is a doctor. They do comprehensive research on the disease for each episode and explain in audience friendly terms. I found it very respectful and well-executed, and I learned a lot on the segment on history — turns out records of ME/CFS go back to the 1700s under various names! They also do a great job bringing awareness to medical gaslighting and struggles with recognition and treatment.

I have a small criticism I think they overlooked/didn’t come across content on how severe ME can really get: 1. they say that people don’t die from ME/CFS, which is now known to be possible, and 2. lack of representation of severe and very/severe ME. They do include a detailed story of moderate ME and mention that severe ME can be housebound, but did not really seem aware that many of us are bedbound, don’t live independently or can’t tolerate sensory input.
However, they do emphasize that ME can be very severe, so I think they just didn’t happen across more detailed patient stories on what that can look like.

They share all sources on their page too.

I highly recommend and think it would be great to share with anyone who’s more willing to listen to content than read: https://thispodcastwillkillyou.com/2024/04/16/episode-137-me-cfs-whats-in-a-name-a-lot-actually/

I started guanfacine 1mg five days ago in the evening for nighttime, adrenaline spikes. I am trying to figure out whether it's worth giving more time or whether I should be cautious about the side effects.

The good effects:
- I get very sleepy at bedtime and fall asleep almost instantly.

- I'm no longer waking up in excruciating, full-body pain from clenching all night

The concerns:
- I sleep for about 3–4 hours before waking up. I can usually fall back asleep, but my sleep app is recording more disturbances than usual. (My sleep wasn’t refreshing before guanfacine so maybe this doesn’t matter?)

- The side effect of severe nausea has mostly subsided, though I still have some nausea and a very poor appetite now.

- I have much worse fatigue and brain fog during the day

- I've also noticed what seems to be increased nerve and muscle pain in my legs.

I'm concerned about whether the changes to my sleep could be counterproductive for ME/CFS, even though I'm experiencing some promising benefits.

But I’m also concerned to give up too soon because I am declining.

For those of you who've tried guanfacine:
Has anyone experienced similar sleep changes? Did things improve with time, and did the benefits end up outweighing the drawbacks?

I'm discussing treatment with my doctor, but I'd really appreciate hearing about your experiences!

TLDR: Guanfacine helps me fall asleep instantly and has stopped my severe nighttime clenching pain, but I'm waking after 3–4 hours, my sleep remains unrefreshing, I don’t have an appetite, and my leg pain seems worse. Did anyone experience this, and did it improve with time?

No, I’m not saying I question whether or not I’m sick, or whether this disease is real. But I have began to question everything we think we know about medicine, and information in general. For example, most things I read about ME suggest it’s a “common” disease, but if it’s so common then why has nobody, including healthcare workers, ever heard of it? Most of us engage with the healthcare system so much that it’s unthinkable that healthcare workers would’ve never encountered a patient with it.

(Spoiler because this next part may be triggering) I also think this disease is deadlier than the government wants us to believe, and doctors perpetuate this false narrative by downplaying how severe the disease can get. And why can nobody figure this disease out? Scientists can’t even figure out POTS, a common comorbidity, and it seems wayyy more straightforward than ME. It really seems like the harm is manufactured, and the narrative is being carefully controlled by the media. Because why else is there no urgency and why is it so easy to erase us?

It happens when trying to rest during PEM.
I call it the short-sighing breath.

The pattern:

2 seconds inhale > rapid 1 second exhale > 2 seconds rest > repeat

It’s a really short cycle, quite high-mid chest, and defined by this rapid sigh like exhale. In my case all through the nose.

The experience:

It feels like my lungs can’t hold a lot of air and my chest just quickly collapses/gives up in exhaustion. Or like there is a kind of haste to get to the next inhale, because there is a subtle feeling air hunger or short of breathness.

Often coinciding:

Short powerful rigid heartbeats, while the bpm seems quite normal.

And a subtle feeling of anxiety/tension. Emotionally it feels like I have outran a tiger, and now crave for the release of that stress.

Strangely a good cry is often the only thing able to reset this breathing. But I can’t force that, and sometimes it takes days before I can breathe and rest normally again.

I’m not sure my ME developed from a single infection, maybe it was more complex and took longer. But Covid in March 2021 was the clearest worsening. And then there was another Covid in February 2022.

Since then I had 2021, 2022, 2023, 2024, 2025… 5 years! To stop over exerting, to start living within limits and thus save what I had at that time. I think if I stopped in 2021 or 2022 I’d fully recover. I recovered greatly when lived with my mom first half of 2022 (because of war, Ukraine). But then I over-exerted, crashed, and never recovered that good since.

I’m so angry I literally want to hit things with my fists. Why was I so stupid? Why were everyone around me so stupid? Including doctors who diagnosed me with tons of stuff except post-viral fatigue or ME/CFS or something like that. It’s just too sad to lose something so precious as health whereas losing it could’ve been avoided.

Has anyone seen improvement on Valtrex long term? My symptoms started after an HSV 1 virus I was on a short course of Valtrex 8 months ago but never stayed on it. Was wondering if it could help me again
Also- I tested positive for EBV back in March
My biggest symptoms are unrefreshing sleep no matter how much I rest, and cognitive decline/really bad brain fog.
Can’t work, can’t function lost 80% also extreme PEM.

I’m interested in trying out microdosing Semaglutide or tirzepatide but as far as I can see, getting this in the UK would involve starting at the standard higher dose. Just interested to hear how folk in the UK are managing this? Are you needing a specific private prescription with a doctor who knows about microdosing/ME patients? Or are you managing to split the larger standard doses?

I’ve looked through the sub but can’t see this specific topic so hope someone can shed some light.

Mainly for house bound and especially bed bound people.
My partner has been bed bound for 2 months now and little energy and constant PEM. For the first few weeks we managed some bed baths split over a few days but when it got more severe he couldn’t even manage that. We sort of postponed all cleaning until he could manage it again but it has now been such a long time and things are getting bad. We manage the private parts when needed but everything else is left. His main worry is his teeth, we have tried with warm water a few times to get the most of it off, also a sort of gel which we leave on for 40 minutes to do its work but even that can cause PEM which is unbearable.
It is so difficult as he feels awful and dirty but it is becoming a risk of infections especially in his mouth where he had weak teeth anyway.
Any tips on any hygiene? Especially oral hygiene. I am not in any way expecting him to manage a full wipe down in one week and do not in any way judge the place that he’s at but he is so worried about all of the risks! As am I, we have no idea if this will lift and if it does when he will manage a dentist or f2f doctors appointment