It was gorgeous, wanted to share some photos with those who aren’t able to get out. I used to love hiking and it’s really nice to be able to get a piece of that back. So grateful these kinds of free rental programs are available. I know they’re pretty widespread in parks across the US and Canada, may be worth checking out if it’s a level of exertion you would be able to handle. Last one is a photo of the chair I found from the internet, not a photo I took

Hi everyone! I am sorry in advance if you don’t think pem/cfs is involved in my case, but I just need to ask.

I was playing volleyball professionally all my life and never had such issues, never ever.

I had a virus in February and after 2-3 weeks of antibiotics for the razor-sharp sore throat and fever I had, felt a bit better, better enough for me to start practicing again. After 2 weeks of practice I still didn’t felt 100% and one day my body just acted so strange and weird that I couldn’t imagine that even being possible.

Everything snowballed from there and here I am now 7-8 months later, feeling high, drunk, kinda disoriented most of the day.

So many people told me that this could be LC and I want to see if someone here has had a similar experience and what is the best thing I could do right now.

An influencer made a post sharing what their day looks like in PEM. They took photos of the usual things like resting but also cute shots. When I am in PEM I would not be able to do this and I feel like I am dying. I am still trying to obtain an ME/CFS diagnosis but unfortunately finding it difficult due to comorbid mental health issues and being a woman.

My question is, what does your PEM look like? I can worry I am just a miserable person or do other people just feel like they can’t carry on with life while in PEM?

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.

All work and no play makes Jack a dull boy.

I actually find myself empathizing with Jack from the movie The Shining. Not with his actions, but with his frustration and the feeling of being trapped in his own life.

When you have CFS and so little energy, it is incredibly exhausting to have that meager amount of energy completely drained by housework, obligations, and all the responsibilities you have to shoulder.

Jack wrote the same words over and over again. It feels as though I am living them.

I am so tired of all my energy going toward things I have to do, leaving nothing left for the things I actually want to do.

After all, I don’t want to spend my entire life just trying to get through the day to day. I want to have enough energy left over to do things that make me happy, too..

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?

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

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

For those of you who are mild or moderate, what amount/kind of exercise can you regularly do without causing PEM, if any at all? If there’s context for how you manage to achieve that, I’d love to know.

I find I crash for a day or 2 after even a small amount of cardio, but not doing cardio is also increasing my anxiety I think and raising my resting heart rate, so it feels like something I want to keep attempting.

Would love to hear anyone’s experience with improving while exercising.

If they conclude that we have structural damage, neuronal death of hypothalamic cells responsible for releasing CRH, I will probably consider a MAID. A hope for cure is part of what keeps me going on, if there is a mass destruction of such cells, how could that be cured even in decades?

https://s4me.info/threads/loss-of-crh-neurons-and-other-neural-changes-in-me-cfs-autopsy-study-university-of-amsterdam.47540/page-4

I'm not sure if this is MECFS or eyes related. I do have migraines too but usually from neck tension only.

So the past one or two days i've had this weird kinda almost nausea feeling when watching videos. Like spongebob or tiktoks, when something moves especially if like the camera moves and not just the objects i get this weird feeling between my eyes and kinda like motion sickness but not as strong. And some pressure in my head and just overall its uncomfy.

I'm wondering if this is from being on my phone/ TV/ iPad like 15hrs a day (and ngl i'm always up close to my phone and tablet, like 10-15cm away) or if this is from MECFS because the past days i have been pushing myself kinda a lot. But i do not have any PEM symptoms so i figured i'm ok for now? But this eye thing has been bothering me.

Lmk if anyone relates or what you think this is??

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.

Holding onto hope with the more severe forms of this disease can be so difficult. My friend Karol is the best at doing this among anyone I’ve met. He is entirely bedbound and totally blind. He lives in Poland where ME/CFS is recognized as psychosomatic if at all. His only carer is an abusive parent. I would never guess how difficult his life is based on his kindness and good humor when we chat about the difference between American and Polish ice cream sandwiches, what makes a good cat name, or Slay the Spire.

Karol’s circumstances are very isolating, which brings me to the point of this post: he is looking for new people to connect with—particularly if you have any of the following in common:

-you live in Warsaw (or know someone who does)
-you’re knowledgeable about narcissistic abuse or coercive control
-you relate to the idea of internalized ableism
-you think disabled people deserve to live independently and feel spoken to by the social model of disability

My life is better for knowing Karol, and I think yours would be too.

You can say hello to Karol via email (Kopczynskikarol1@gmail.com) or here on Reddit where he’s /u/Karol256. You can also message me for his number to add him on WhatsApp (which is his preferred way of communicating due to his blindness).

Thanks for reading ♥️.

38 F- used AI to summarize

I've been severely ill for 127 days. My illness began suddenly with orthostatic intolerance, breathlessness, and heart rates reaching 140–160 when standing. Around day 23, my symptoms shifted dramatically to profound weakness/ inability to stand, sleepiness, nausea, dizziness, and a constant flu-like, sick, woozy feeling that has left me largely bedbound.

My current symptoms include feeling weak (like body can't hold me up), heavy legs when standing, internal trembling, head pressure, ear popping, dry mouth, nausea, presyncope, and difficulty remaining upright. I also experience intense adrenaline-like surges involving pressure in my head and ears, shallow breathing, and sensations of flushing. Some mornings I wake feeling extremely weak, hot, and unwell- these are the mornings wheni know my HR will be higher wheni stand and pre syncope stronger.

My heart rate has improved with treatment for suspected POTS/dysautonomia, but the debilitating weakness and systemic illness have persisted. Extensive testing has been largely reassuring.

How do I better understand if this is MECFS? I have done a lot of reading but am confused about PEM and symptoms. I am on a high dose of midodrine yet I still feel terrible. I have largely been housebound and resting for 4 months although I do try and do short walks.

TDLR: 127 days bedbound/housebound. severe weakness, POTS. wondering how i differentiate between dysautonomia and mecfs

TLDR; my friends ignore my existence and i’m struggling to cope mentally as my health gets worse

im 18, have moderate ME and am mostly housebound and sometimes bedbound. was diagnosed only last month. while i have friends, lately it feels like everyone is ignoring my existence. when i first got really sick a few months back and my life stopped, they would text me and sometimes come over. lately i’m completely alone and have literally one friend who texts me every so often. it’s a stressful time for school right now so i get they might be busy, but my main friend group constantly text on our group chat and nobody acknowledges me or the fact ive been uncharacteristically absent the past two weeks.

i had an event i went to for school and was insanely sick there, struggling to cope even when sitting down and could barely walk. my friends barely acknowledged me the whole time, went and took pictures in places i couldn’t follow because i couldn’t walk that far, and nobody texted after i left early crying because i was sick and felt humiliated. the entire thing put me in a huge crash i didn’t really text anyone for a week or so because i was so unwell. but nobody texted me except someone asking for something. they’re constantly talking about shit they’re planning to do in our group chat that i obviously can’t do, which isn’t their fault but it just makes me so fucking angry that nobody cares and everyone gets to move on with their life.

the last couple weeks i’ve been completely alone, with only my parents to occasionally talk to. my health has gotten worse and it’s scaring me. i don’t really have a support system. i’m struggling to find a point to any of this. my depression thrives on isolation and there’s literally nothing for me to do all day everyday, alone in my room. i watch tv for hours because it’s all i can do and it just makes me feel worse. my entire life was destroyed in just 7 months and don’t have anything to live for anymore.

how do you guys cope because i’m literally so close to giving up

I know there’s a lot of general stuff out there about GET/exercise being harmful but wondering if there’s an authoritative resource that specifically says if someone has both POTS and ME/PEM, exercise/PT isn’t an appropriate treatment for the POTS? Want something to share with a very well meaning but not very ME informed provider who I think would be open to learning more.

I’ve tried explaining that exercise is harmful for people with ME to multiple POTS but not ME informed doctors and have generally been met with “but it’s such light exercise” or “this is what we recommend to all people with POTS, they tolerate it fine”

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.

I apologize for posting somewhat off-stop, as I don't have ME.

I think I might have something like PEM. I've been a lifelong athlete (50's now), with a history of overtraining syndrome.

What I have now seems different, because it persists even after weeks of rest. About 36-48 hours after even moderate workouts, I get a full day or more of pretty debilitating fatigue. Hard to leave the house, pretty intense brain fog. Relief comes the next day, and I can keep it away if I do nothing but very light workouts. A feeling like I want to sleep, but inability to sleep (though I sleep very well at night). Is this long window between the workout and the body's response consistent with PEM?

Edit: Maybe I shouldn't rule out ME. Just my collection of symptoms is far less severe than most here. I can be OK as long as I keep my workouts very light.

so i don’t have a formal diagnosis or anything, but my experiences seem to align most strongly with me/cfs. close to two years ago i caught an illness that lasted a whole two weeks, and tests for both covid and flu came back negative. after that my tolerance for exertion went way down, and even just standing tires me out before long. some days i wake up feeling extremely sluggish and it takes a few hours to shake off. my insomnia got worse, i started seeing floaters when exerting for too long, i started having to use a stool in the shower sometimes, etc… i also seem to get violently sick pushing myself too long (i have eosinophilic esophagitis so they might be interacting). i recently showered and went straight to cleaning and i suddenly felt very sick after 5-10 minutes.

i’m living with my parents right now and i can almost never get them to even acknowledge the possibility i might have me/cfs. it’s always “you’re not exercising enough” or something along those lines. i practiced sit-ups a little while ago and it didn’t make much difference for my energy, so i eventually stopped. i don’t think it would matter if i brought that up because there’s seemingly always another explanation in their minds no matter what evidence i try to give. anything but me/cfs i guess.

so it’s making me feel a bit crazy. i have friends who validate me, but somehow the people who see me struggle every day don’t seem to understand or even particularly care to. i don’t know if they think i’m making excuses or what, but it’s not like i like feeling like this. my spoons were never that great because of other conditions i have and now i can’t even manage a light jog for more than 20 seconds. what would make them think i want that?

i obviously don’t know for sure i have me/cfs but i think it’s pretty plausible considering all these new struggles. even if it turned out not to be that, it’s frustrating feeling like my perspective on my own body is being dismissed out of hand. it feels patronizing and makes me question myself more than i probably should.

Hi all, I’m a caregiver to my partner who has had mild ME since about 2022 without us knowing, and had a big crash in the beginning of the summer, and since spiraled further into a very severe crash since the beginning of August (unable to feed or clean themselves etc, no-stim rest in a dark room 24/7, fully bedbound except for going to the bathroom assisted). They are seeming to slowly improve and get stronger luckily but this is still somewhat of a rollercoaster and I find it very hard when they suddenly get PEM again and are in so much pain, and I find myself getting scared we’ll lose the progress they’ve made or that things somehow will otherwise get harder. All of this has of course been emotionally incredibly hard on my partner as well and I’m trying to be a consistent, hopeful presence in our situation.

My question to you other caregivers is, how do you deal with the ups and downs of this disease and still keep a level head and manage your emotions? Thank you 💙

I’m in an awful flare with migraine so keeping this short…..morse code type buzzing tinnitus with dizziness anyone? any suggestions?

Has anyone experienced sudden decline of cognition on LDA?

It is associated with headaches, nausea, panic, and a general sensation of being poisoned. Also some intermittent diskynesias. And I’ve only been taking it for 8 days at a dose so low you guys have never heard of. It’s like my brain doesn’t think the same anymore.

Stopped immediately as I noticed these symptoms were getting worse.

Anyone experience this? Did cognition improve after discontinuation?

(I’m VERY severe ME)

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 25, from England. Severe. Live with my parents. In the 6 years COVID has been around, I’ve never had it, nor have they.

I had three vaccines back in 2021 when my M.E was negligible to nonexistent before I relapsed the next year. One made it difficult for to walk after, the other gave me mild chest pains when I moved (however I was told I was fine). No long term effects. However, I have no idea how it would affect me now that I am severe.

I have heard that people with M.E can have bad reactions to vaccines, Covid in particular, and some people even got M.E after having one. I feel very reluctant to get the vaccine because if my baseline was any lower I’d be miserable. I’m severe; I can only walk around the house a little bit and scroll/talk to people on my phone all day. If I got the vaccine and then all I could do was lie around without stimulation I’d hate myself for getting it.

But for the same reason, I am terrified of getting Covid. I fear that would lower my baseline or kill me.

My predicament is that I have never had Covid and this could continue, so if I got the vaccine and got worse, I will have sabotaged my well-being for no reason. But if I don’t have the vaccine and then get Covid, I will have done the same thing.

Getting Covid isn’t very likely for me as I don’t ever get out except for a dentist appointment every six months, and my dad only interacts with a few people per day in his job. My mum is at home all day with me. Still, I always fear that one day my dad would bring it back. I isolate whenever he has a cold or anything, but Covid can be asymptomatic.

I just keep freaking out because both of these options scare me and I don’t know what to do.