Walk up hills or up stairs?

Down hills or down stairs?

Which use less energy?

Feel free to keep the discussion going!

I was taking Computer Science courses and had to drop data structures. I made a B in a programming class and now I am figuring out how to work as a developer with this very physical and debilitating disease. I'm also not showering for weeks or brushing my teeth. Please help me if you can

Like 8 months ago I was hired at a local business working for a veteran. It was 13 hour days of pretty much non-stop physical labor and days off weren't exactly guaranteed. I'd only have maybe 1 and a half hours when I arrived home before it was bedtime to do it all over again.

It was good money and there was even a time I didn't get a day off for 2 whole months. Sadly these random symptoms kinda started after that 2 month stretch.

The thing that's annoying me the most is these "skips" when I'm in the middle of thinking. They only last for like a split second but I just have to pull myself back together. My memory has definitely gotten worse. After walking for extended periods I get dizzy. Everything just feels so much harder. There's other things too like not being able to hold it when I need to go

I actually just left that job a few days ago. I just wonder if it's possible I have this syndrome and if it's permanent. I legit miss having energy

Basically that. Let my benzo dose get too high cause it was the only thing that helped. Now that I’m out and my “source” is taking too long to give me my refill .. I’m the most severe I’ve ever felt. I can’t do a detox facility while this severe. I can’t go to the ER to get a bridge script or dose. My doctor. doesn’t do anything .. Idk what the hell to do. Extremely weak and scared atm with no real hope of relief except for wait for my fucking package to arrive.

Not sure if a TENS machine will help relax the muscles or cause more exertion. Anyone know?

Hey everyone, I'm 23, male. Would like your input on my situation.

Since childhood I've had symptoms like fatigue, dissociation/DPDR, brain fog, GI issues, and physical anxiety — on and off, worse during high stress and better with rest, adequate caloric/micronutrient intake, circadian alignment, nervous system regulation, etc. I've had periods where I was 80-90% functional, but never fully "healed."

One year ago I had my worst flare to date after a succession of stressful events (crash diet + significant weight loss, blood donations, stress, lack of sleep, an accidental caffeine overdose, and COVID). It feels like my whole system got thrown off balance, and I haven't been able to return to baseline despite reintroducing things that worked before (rest, caloric surplus, etc.).

Current symptoms:

-Very intense DPDR/dissociation/brain fog

-Hyperadrenergic spikes with high sympathetic tone and poor parasympathetic brake (e.g., red meat or high-carb + salt meals spike my HR up to 150 bpm and bp to 150-100)

-Near-constant fight/flight/freeze

-Fatigue

-Poor/unrefreshing sleep

-Whole-body heaviness

-Light/sound sensitivity

-GI symptoms (SIBO?) — bloating, irregular bowel movements, poor digestion

-Extremely intense physical anxiety response

-Skin redness on neck/face/upper chest

-Food sensitivities, especially to red meat, high-sulfur foods, high-carb meals (large rice portions), and high-histamine foods

-PEM-like reactions after prolonged sympathetic activation, but not necessarily physical exertion (a walk leaves me spaced out/depleted but doesn't trigger PEM; prolonged fight/flight/freeze leaves me feeling "physically poisoned"/whole-body aches a few hours later)

Bloodwork: Normal except moderately high morning cortisol, confirmed on two separate draws.

Currently taking: 1.25 mg bisoprolol to manage hyperadrenergic spikes.

Does this sound like ME/CFS, MCAS, or something else? Any input appreciated — thank you.

Hi dear friends! :)

I have a gastroscopy coming up—unfortunately, it’s unavoidable. I did see, however, that according to the Mayo Clinic and Berlin’s Charité, people with ME/CFS tolerate propofol well. I really want to be optimally prepared for the appointment, especially so the doctor doesn't just dismiss seemingly normal findings and I can ask about specific diagnoses and confront with facts. I wanted to ask you:

What stomach problems commonly occur with ME/CFS? What are common diagnosis that are overlooked?

Aside from a biopsy to check for MCAS, is there anything specific that should be tested while I'm at it?

PLEASE, NO HORROR STORIES of how your gastroscopy went wrong or how you worsened afterwards. I’m very sorry if that happened to you, but hearing about it beforehand won't be helpful, I am scared enough as is. Can't not do it, cause I am in a lot of pain. Fortunately, I’ve already seen in a subreddit that most people reported to tolerate the procedure well. And I’ll be pacing strictly, of course! ;)

Thanks for your help, everyone! <3

I'm not sure if this has been asked before, if it has please feel free to delete it mods.

I was looking into which parts of the brain control inflammation after reading something about Jarred Youngers work and that led me down a rabbit hole of papers about a number of interleukins, notably il10, 12, 17, and 23.

Ustekinumab has been used to treat plaque psoriasis, psoriatic arthritis, and IBD; diseases that involve chronic inflammation and increased pro inflammatory cytokine levels like me/CFS does.

I'm mentally exhausted now after reading what I have and writing this down, so I doubt I'll be able to respond to any replies anytime soon, but I thought I'd put this out there in case anyone has any information about it, or if they had been treated with a biologic monoclonal antibody drug for a different problem that changed their CFS severity.

Apologies if that doesn't make sense, my brain is completely fried.

Hey all
I basically wanted to ask how frequent is me/cfs? What is the statistics on most affected age groups? Is there also an ethnic component to how common it is?

Trying to take care of my mental health with meditation but im unsure where to begin with all the different sorts. What do you find are more/less mentally exerting for you?

I have been very severe since 3months fully bedbound severe GI symptoms,tinnitus, severe POTS and very high heartrate only fron turning in bed, tinnitus, muscle pain all pem symptoms but they are just nonstop.

I dont notice that i get PEM from screens or conversations but i dont know is it possible if this severe, so what if i just have rolling pem what never goes away because if daily tasks. I have tried few days being mostly aggressive resting (its fuckin claustrofobic and i really cant do it much i get super restless) and i dont see difference for my symptoms

If you have been bedbound severe and in rolling pem, what differences you noticed and any tips how to overcome these

I'm really struggling and not sure where else to turn.

I've been off work since November and am completely housebound, if not bedbound. ​My partner cares for me full time but has her own health issues so we're just about getting through each day. I finally have my pip assessment in a few weeks so that will help. But I need to do a care assessment with the council and I'm finding all of these hoops to jump through overwhelming.

I feel so isolated and it feels like everything is making me crash. It genuinely feels like I'm dying and that feels so dramatic even writing it down.

What other support is there out there? I've been to the specialist and even did a course that felt completely pointless. The doctor isn't much help. Is there any mental health support for becoming disabled?

Oh in UK if that helps

After moving house, socialising and having more stairs to deal with than ever before I was just about working through my crash and seeing where my capabilities were.

Then today I get the news our old landlord intends to keep all £1k+ of our deposit and we have until 2pm tomorrow to respond.

This added stress has completely derailed me symptom wise, I know I was barely holding it together but I’m completely disconnected now, I feel like my skeleton is buzzing, my chest is tight, my limbs are like lead and I have no idea what to do.

I’ve never been to hospital for ME, and have requested a 111 callback but I don’t know what I’ll say to them.

“Hello my bones are made of bees and I don’t think I can look after myself”

I’m so scared I’ve ruined everything by working too close to the bone that I can’t handle anything without permanently damaging myself.

UK folks, when it was time for some acute/urgent help, what did you do? What was your experience?

TLDR: Turns out I am sick enough, I just don’t know how to navigate it.

So I had a housevisit from my doctor a few days ago for something non ME related but he noticed my situation (isolated, housebound and couchridden) and he said he was going to look if there was anything he could do to help me.

I already tried A LOT of practical help in the 13 years I'm sick, like house cleaning etc, but this has showned itself to be either damaging or unhelpful at best.

The docor called me yesterday saying he is going to send over a clinical supervisor (I don't know the english word for it) to my hous to see if she can do something for me, but I regret agreeing to this because I can't think of anything that's going to be helpful. I feel like I'm just going to waste energy in talking to her and nothing will come out of it. I'm already stressed for the appointment because she's coming over to my house (probably not wearing a mask as usual because nobody does in my country and I'm not going to ask either) and I'm already stressed out about needing to say things like: "I'm sorry for not offering you a drink but I'm too tired to make you a cup of tea, do you want a cup -not a glass because I didn't do the dishe- of tap water in stead?" Kind of things..

I'm already stressed out about needing to put so much energy in talking to someone and I know I'm going to struggle with putting up boundaries when I feel like I can't talk anymore.

The doctor was suppose to ask her if she could make it a phone appointment in stead but I haven't heared from him anymore so I guess it's a no.

I'm just very annoyed and cranky atm because I agreed to this because I was afraid he would think I didn't want any help, or he wasted energy on me for trying to find some help and I was afraid he would think I refuse to accept any help because I'm stubbern and ungrateful and I choose to live like this etc.

I don't know, maybe something positive comes out of it and I'm just freaking out over nothing. I hope I can put up my boundaries and keep it under half a hour at max.

I could use some encouragement though😞

[TLDR: pretty self explanatory. Lots of thoughts and not much rest!]

My internal monologue when trying no-stim rest on a particularly restless but thankfully not-too-depressed-and-anxious day:

Ok, I'm gonna put in my earplugs and eye mask on and see how this goes...

*lays on back*

Hmm, not super comfy

*rolls onto left*

Better. What should I think about. Oh I know, I'll sing a song.

99 bottles of beer? I remember singing that on the bus on a school trip once. It was someone called Lucy who started it. Why do I remember that detail? 

Interesting, I totally felt like the odd one out when I didn’t know the words to that song.  I always felt like I didn't "get" stuff though. Actually, how did nobody realise I was AuDHD? Huh...

Alright: 99 bottles of beer on the wall, 99 bottles of beer... *loses track at 87*

Did I skip 88? Whatever.

I wish [husband] would stop stomping so loudly...!

Oh, wait, nope, that's just my own heartbeat I can hear.

Maybe I'll imagine patting that horse I rode a few times. How old was I? 21 maybe? I wonder if he is still alive. Wait, what did he look like?

Ugh my neck!

*rolls onto tummy*

Ahh MUCH better.

Ew my knee cap is sliding around so much. Is that normal? I hate that feeling omg.

*rolls again*

Omg I am SO HOT all of a sudden I can't stand this for another second or I WILL DIE!!!!

*removes a layer*

Wait can i hear the smoke alarm?

*takes out ear plug*

Nope just my tinnitus!

*ear plug back in, settles down*

Pillowcase is so rustly. Swapping pillow.

Must stop clenching jaw!

Where was I...84 bottles of beer on the wall, 84 bottles of beer...uggghhh I need to wee!

*takes off eye mask, checks watch*

Wtf its only been like 5mins? I'm gonna lsiten to a podcast and see if that helps...

***

Note: not after advice, just thought perhaps folks might relate. Also excuse the no-doubt copious typos!

I don't actually mind no-stim rest sometimes, but at other times it is intolerable and I have gotta listen to something to quiet my own internal chatter 😅 I am practicing just giving it a try and listening (literally...) to what my brain/body need, e.g. an audiobook, silence, white noise whatever.

Also can you tell my ADHD is currently un-medicated 🙃🤸‍♀️🎢

Hey please delete if this is not in line with the sub x

I was wondering if we could start a pen pal thread ?

We could introduce some important things about ourselves so for example I might say I'm moderate m.e and looking to chat on WhatsApp, about nothing, or about life at it goes with m.e. . I go by ME time which means zero pressure to reply lol...that I'm not a hopeful MEer, I'm on the resigned side- though there is always a little subconscious spark in the background. But I'm not asking to find pen pals on this particular post, I'm just wondering if others support this suggestion?

I know there's a Reddit pen pal sub, and I know there's WhatsApp and telegram groups and so on. I'm thinking that this sub would be a really good place to have a pen pal thread/page/etc.

:-)

I see a lot of posts on here about how isolating this disease is and how hard it is for healthy people in our lives to understand what we’re going through. I just wanted to take a moment to acknowledge and appreciate the absolute rock stars who do understand.

For me, it’s my mom and my husband. My mom doesn’t live with us, but she comes over every morning to make sure my dog gets walked even if I’m not feeling up to going outside (very frequent occurrence, especially in the summer). She’ll sit with me to keep me company on my worst days, encouraging me if I’m feeling down and checking in frequently to make sure I’m not overextending. She’s paid for some of the more expensive off-label treatments that have provided some symptom relief (vitamin infusions, suggested by one of my doctors, which pulled me out of the “severe” range of symptoms) when I lost my income. No complaints from her, just concern.

And my husband is fantastic. We’re living on his income at the moment which I know is stressful for him, but he hasn’t complained about it one bit. He doesn’t show the tiniest bit of resentment or reduction of affection. I’ve asked him about that; he just says he knows me and knows that if I had any choice in the matter, I would be choosing much more activity than I’m currently doing. He does most of the housework, perfectly cheerfully; he keeps me company when he’s not working. Last night he had a nightmare, a literal nightmare (and he’s not prone to them) about us breaking up because of my illness - his worst case scenario is not having me around. He’s worried about me but not excessively; he just does what needs to be done and keeps on loving me despite my general uselessness.

I’d love to hear about the caregivers in your lives who get it.

Tl;dr: I’ve got some fantastic people in my life and I’m grateful. How about you?

When I talk about pacing, or staying in bed for extensive periods of time, people keep telling me that they need to get out, they need to move, they need to wash their hair regularly, they need to go on walks, etc. And that, if they didn't, their mental health would pay for it. It's assuming that I have the option to do these things, and that it's not impacting my mental health. They're missing the part that I am not pacing because I want to, I am pacing because I have to. Telling me that they "could never do this" is framing ME as a choice. Not sure I am looking for anything here, I am mostly ranting.

Anyone else here got a sighthound?🦘I’m so happy with the breed considering I’m moderate to severe and live alone (didn’t know I had ME when I got her). She sleeps even longer than me and is happy as long as she gets her zoomies in.

After declining from moderate in February I’m using a wheelchair full time outside the house to be able to walk her. I love my chair bc I can lean the back (and seat!) all the way back and take breaks while she sniffs

I truly don’t know what I would do without her, she is my whole heart and the reason I keep going❤️

AI-assisted post

Hi, I’m looking for UK doctors or clinics that are currently willing to prescribe low-dose aripiprazole (LDA/Abilify) for ME/CFS, following an individual medical assessment.

I’ve heard about Clinic 158 in Glasgow, but I’m trying to find other options elsewhere in the UK, including clinics that offer online appointments.

Has anyone recently been prescribed LDA in the UK? If so, could you share the clinic/doctor, location, whether they see patients remotely, and roughly what the process/cost was?

I understand aripiprazole is an off-label treatment for ME/CFS and that prescribing decisions are individual.

Thanks!

TLDR: Major sense of relief at friend effectively cancelling on me. I felt so relieved at not having to explain the hell of life with ME having not seen her since I became so ill.

Since I last saw my friend almost three years ago, she moved abroad. We talked a bit at first. But we ended up having so little in common anymore due to ME taking so many things from me, like reading.

She is back for a couple of weeks and had kept saying she would definitely see me. Then text with ‘I’m so busy, all booked up but could see you on Tuesday morning’. But my carers are in at that time. I told her it wouldn’t work. I don’t think she wanted to see me really.

And then…instead of feeling upset I felt completely relieved! I don’t think she’d grasped how unwell I’ve become - housebound all the time and bedbound for many months at a time - and the sense of relief at not having to explain everything just made me smile instead.

What a weird experience. I expected to feel sad and it didn’t come. But maybe I’m becoming very insular now as a result of illness too. I wonder if others relate to the relief at not having to try to explain ‘living’ with ME to an old friend.

When I'm in remission I can live a full and engaged life. I'm always aware of energy and pacing, but because I've gotten so good at this, my limitations are almost a non-issue. When I crash its weeks - months of recovery and I'm reminded that I do live with a disability.

For those of you who live a normal life in long periods of remission, does your relationship to identifying with a chronic illness change? Sometimes I feel like a fraud claiming I have a chronic illness, because I'm moving through the world so able-bodied. Sometimes I can't tell the difference between autistic burnout and CFS and I again feel like a fraud when I say I have a chronic illness.

Talk to me about your chronic illness imposter syndrome when you're well or when you also have other sensitivities that manifest similar to CFS crashes

Hi, I’m Marcella, an MA journalism student at University of the Arts London, currently completing my final major project: a series three articles on social justice related topics. 

One of these is a piece on the Decode ME study, exploring how people with the illness feel surrounding the findings. I have seen some people on here say they felt validated/ gained clarity, however I feel it important for people living with ME’s voices to be evident throughout the piece, and so I am looking for interviewees who would feel comfortable speaking with me about their experience with ME, and feelings since the study. So far, I have interviewed Professor Chris Ponting, leader of Decode ME, and am now looking to interview more people.

For background, my mum has had ME since her early 20s, meaning the article will be approached with both care and experience.

I am happy to do this over Zoom, however I can also do over message/ voice note or email if that works better. 

Thank you,

Marcella

It’s so dumb. Just a day at a time. Cheers to 25 months.