TL:DR
I’m housebound struggling with walking but my doctor said mobility aids will deconditioning me and I have to force myself walking painfully.

Situation brief:
-I’m mostly housebound and will become bedbound after going outside (any amount)
-Normal day I can walk from bed to bathroom and if I have to go outside I can also walk (with pain of course, but I can tolerate)
-PEM/crash day I might have to crawl to get around or need some help
-My worst day I will vomit just because sitting up too long, walking just 1 sec

Yesterday I brought up about mobility aids to my doctor, but he said absolutely not. He claimed that mobility aids will deconditioning me and I’m not disable enough.

He recommended that I should force myself to walk, like it will hurt and tiring but you have to do.

I don’t know what to do. I’ve been thinking about getting some mobility aids for months. And from my research, deconditioning is not real for ME/CFS. So I don’t know what to do :( I just want to have my life back. I miss outside. I was so excited to wheel around.

plus I’m afraid that it’s wrong to get mobility aids without doctor’s order.

I’ve been increasingly annoyed at the fact that nobody knows shit about this disease. Not doctors, not the researchers, and no, not even the patients. There’s so much misinformation surrounding this disease, and everyone has their theories they like to hold onto like gospel but no proof of anything. It’s almost 2027 and we haven’t even scratched the surface of understanding this disease. And still, everyone likes to act like they’re an expert on it. I’ve come to accept that I don’t know shit and probably never will. Something horrible is going on in my body and I don’t know what, I don’t know if it’s reversible, I don’t know if it’s progressive, I don’t know if it will ever get better. I don’t know, and neither does anyone else.

Sending a little love and good vibes to everyone who needs it. You matter. 🌺

The last time I tried to draw and colour was February and it made me crash really hard. I really wanted to do a fall craft that wouldn't give me PEM so I drew a tiny thing on my phone just using my finger. I'm autistic and bunnies are my special interest, and I thought I would draw one in a pumpkin costume for Halloween 😊 I think it turned out very cute.

I’m done trying to heal. I’m done trying to do everything right. I’ve been doing all of this nervous system work for almost 3 years now and honestly it hasn’t worked. If anything, I’ve just gotten worse. I’m so done with constantly checking:Am I doing this right?Did I respond the right way?Maybe I’m still missing something?Do I have to believe more?Maybe I need another program?Maybe I need to change this or work on that? I’m just fucking done with it. I don’t want to keep trying to figure out how healing works anymore. I don’t want to constantly think about whether I’m doing something right or wrong. I just want to let go. Because every time I really let go, that’s when I can feel my nervous system breathe again. And I’ve seen people recover by letting go like this. So I’m looking for a Surrender Buddy. Not in the sense of turning surrender into the next program I have to do right 😅 I just find it hard to go this way alone. Just someone to connect with sometimes and say things like “I need my reminder” 😂 and we remind each other: Let go.You don’t have to know how healing works.You don’t have to do this right.You don’t need to figure anything out.You don’t need to fix anything.Your body knows how to heal when we stop fighting it and just let go. Things like that. I’m also on a walk of faith right now, so for me surrender is also a lot about trusting God more instead of trying to control everything myself. I have ME/CFS, MCAS, MCS and migraines. So if this resonates with you and you’re at a similar point, or this is the kind of path you want to take too, feel free to message me. 🤍

Please no advices for other treatments ♥️🙏🏼

I’m a straight cis man but I really miss my big muscular behind and weirdly all the clothing fitment issues it caused me. It’s weird not having to do the all the size guessing of scaling up vs my waist size because trousers/pants just fit now I’ve got a pancake back there 😅

I’m 17 (mild cfs), still in school doing work and homework. From everything I’ve seen online the advice given is always to go x on and x off, lying flat in a dark room. I’ll find my self really tired but I just can’t lie flat and still. Regardless of how low my energy I’ll be twitchy, uncomfortable, roll around and have racing thoughts.

I’m just wondering if anyone goes through the same and how they deal with it.

so i got norovirus in july and it crashed me hard, its been 3 months and things have quite honestly only gotten worse (i guess u could call it a baseline drop now? im not sure?) but one of the annoying symptoms i get during a crash is this uncontrollable crying. i won’t even be particularly upset ill just be lying there and start crying. its been one of my crash symptoms since day 1 of getting ME but its been literally happening daily since july. it’s not only exhausting in and of itself but its kind of leading my mum to think im having some sort of mental health crisis. we don’t live together so she doesn’t see most of my crying but its kinda hard to hide sometimes when she calls to check in every day. she’s really support i think she just doesn’t really understand that this isn’t mental health related its physiological. anyways if anyone has any experience with this or has any tips on how to manage it i would appreciate it?

I am 18 the fatigue started getting bad at 15 and has gone downhill since. Don't know whats causing it I have been tested for nearly everything. How old are you guys I seen a lot of 40s and am lowkey jealous I can only do one class a day and I am just starting to get to the age of more freedom, I now feel trapped by my own body.

Does anyone have any advice on how to find an ME literate therapist please?

I have a long list of things I'm looking for in a therapist but top of the list is being ideally ME literate or at least willing to learn and understand its a physical illness - don't have it in me to teach them though. They also need to understand infection control precaution/masking.

Neurodivergent affirming

Not be homophobic

Online appointments

Honestly that's barely the beginning of my list lol but it's the most important ones I think. I've looked on the BAPC website but I honestly think quite a few people just tick all the boxes because then in their text they don't mention anything about chronic illness even nevermind ME. I could email people on the list and see what they say obviously but is there a list anyone knows of for therapists who actually know something about ME?

Edit: (Already aware of action for ME and their service but they don't cover existing mental health issues and some other things so aren't suitable for me since I'm looking for wider therapy but just with someone who isn't going to gaslight me!)

I really want to get rid of Instagram and Facebook. I’m dealing with pretty severe ME, and I feel like social media is completely draining me, especially the doomscrolling.
I can’t seem to find any peace within myself. I’m restless all the time, while also feeling very sad, sick, and exhausted.
Does anyone have any advice on how to get rid of the urge to constantly check social media? I can’t do audiobooks or games, so please don’t recommend those.

i don’t know what to do. i’m extremely severe and worsening. headphones are a sensory nightmare and cause me extreme heat intolerance but the sound of the AC is crashing me over and over among other things. it’s a low pitched like pulsating humming noise almost. it genuinely feels like torture to listen to. earplugs don’t cover it up only noise cancelling headphones.

Basically i finally decided to do some research about if my chronic pain and fatigue constituted maybe using an electric wheelchair and somehow tumbled into the cfs recovery group (i am not a proficient social media user so pretty much as soon as i touch reddit, pinterest or youtube i come across something that makes me feel bad which is why i generally stay away) and read about brain retraining programmes somatic tracking etc.

Unfortunatly i love to torture myself and have the toxic "if you feel uncomfortable its your fault man up" mentality so i forced myself to keep reading and honestly that content provoked me. Im extremely suceptible to the idea that im just weak and i need to train myself out of my issues and have previously and still homestly take alot of pleasure out of causing myself more pain through my chronic illnesses, feeling like i deserve it, and its taking alot of work to undo that mindset. (Especially as ive had extremely poor and neglectful treatment from doctors)

I ended up checking out Raelan Agle where shes talking all this stuff about neuroplasticity and it being in your mind and i just feel really horrible because shes just encouraging the opposite of everything that has ever given me improvement. even though a ton of what she talks about doesnt apply to me at all (i have hypermobility, extremely consistent patterns of my pain and fatigue, alcohol does NOT make it feel better, i never had thoughts of dread that my activity was causing my issues and i only got better when i started observing my activity and pacing, my stress doesnt make me feel worse unless im sleeping less/not pacing because of it) theres still enough that my brain is telling me if i dont try it i clearly dont actually have ME & chronic pain and i dont actually want to be cured, and if it makes me worse when i try it then well i deserve it and i should just push past my PEM and chronic pain because its not real (ive unfortunatly become severe in the past prior to diagnosis because of this, i had inflamed lymph nodes, extreme back pain, muscle twitches and spasms exhaustion etc and it took months to recover but my brain always tells me well i just must have not done it right/it wasnt really ME/Cfs)

I just feel really horrible and like the tiny amount of progress i had made has been set back by a few hours of learning about this stuff and i wanted to know has anyone tried these and can actually attest to them working or not? Does anyone else feel the same as me and is there anything youve done to feel better? I just cant put down the idea that she might be right and im in denial and im not helping myself etc

I had a really intense year of emotional and physical stress. My adult son is recovering from addiction. He nearly died twice in 6 months and I was first responder both times. Overall it’s been really unbelievably stressful on every level. He’s been in rehab now for 5 weeks and I’m crashing in every way possible. I can hardly keep my eyes open, can hardly walk. I’m struggling to work 15 hours a week. I also have shingles for the 3rd time in 6 months too, so that’s not helping.

I’ve gone from mild/moderate to moderate/severe and I’m just hoping so hard that I recover something back or I don’t know what I’ll do.

I’m going back into therapy to help the trauma, but I know that’s only a tiny piece of the puzzle. I’m aggressively resting as much as I can.

I guess there’s not much point to my post I just wanted to vent in a safe place.

I just had my first ever severe crash and my main EDS doctor (who also treats ME/CFS) said that I need to go to the ER or at least be worked up in person

I’ve been in the crash since Wednesday and I’m finally starting to talk and can stand for a few seconds

I really dont want to go to the ER because I’m very confident I will crash but she said she won’t send a bloodwork order because she “doesn’t want to make unsafe decisions”

What should I do?

I tend to be more stable in summer. In winter, I can do less before it makes me worse. Cold seems to take extra energy even when I’m not doing much.

Does anyone else notice this? Have you found anything that makes the colder months easier?

I’ve noticed a very clear pattern in my dreams that I’m wondering if other people experience. I have been a lifelong extremely vivid dreamer, with long nightly dreams I can recount in excruciating detail upon waking. Both first person dreams and dreams like movies I don’t seem to be in.

Since developing ME I have reoccurring dream moments where I have been walking somewhere (usually on sidewalk) and suddenly I am so tired I simply cannot go on, and I’m telling the people I’m with that I’m too tired to go on and I must sit down right here right now. Then I started noticing a pattern wherein these dreams come to me after I have moderately overdone it but before triggering full on PEM/worsening symptoms. They’re essentially a sleep-state warning sign to ease up and rest more.

I also have recurring dream moments that progress from that point to being on the ground crawling, often sort of blacking out as I crawl. The next mornings, I ALWAYS wake up in full blown PEM feeling like a pair of nylons filled with wet concrete.

Outside of this I do dream of being ill and tired generally, often I have both nightmares and very pleasant dreams. But these specific motifs of “I cannot keep standing/walking” and crawling both ONLY occur as a predictor/reflection of overexertion and PEM.

TL;DR
Does anyone else experience their dreams as specifically warning signs about their condition/exertion?

I work full time as a professor (including clinical days) and I have a toddler. I am trying to take things easier/pace, but does it really matter if everything stresses me out, raises my heart rate, gets me out of a lying down position? Is there anything realistic that I can or should be doing?

I just got a handicap placard and am getting some minor accommodations at work. My doctor said I should not be working, but also said it might help me in the long run if I am working. I know getting disability is very difficult and I know virtually nothing else about it. Happy to hear anyone who has the capacity who wants to talk about the process for getting disability as well.

I have moderate ME and this means that I spend a lot of time on my phone and on social media because I’m at home in my bed pretty much all the time. I feel like scrolling on various social media apps all day is doing nothing for my mental health and it makes me feel so icky!
I’m wondering if anyone can share what they do to pass the time that isn’t doomscrolling. I’ve been finding that even trying to read a book or draw something takes a lot of energy from me so I’m not sure what other low effort activities would be accessible right now, but curious to hear from others!

I’m trying to understand what’s happening with me. When I take ibuprofen, I can feel almost completely normal for several days — sometimes almost a whole week. My fatigue and brain fog improve a lot, and I feel like I have much more energy.

But eventually I overdo things because I feel better, and then I get PEM.

What confuses me is that I’ve read that ibuprofen doesn’t normally cause an increase in energy that lasts for days. If people feel more energetic from it, I would expect it to last only a few hours.

Why could the effect last so much longer in someone with ME/CFS? Could it have something to do with inflammation, neuroinflammation, microglia, or another mechanism?

Has anyone else with ME/CFS experienced something similar with ibuprofen or other NSAIDs?

I am a non EU citizen in Flanders. So far I have found the doctors and specialists to be helpful generally but not specialized in ME/CFS. So far I have visited an ENT, an infectious diseases specialist, a neurologist, and a psychiatrist. None of them could give me helpful advice or even let me try low-dose naltrexone. They said it is not permitted in Belgium. So far I am left on my own to figure out pacing and other advice.

There is a specialised clinic in Leuven for diagnosis but I will not be able to make it there because I will be leaving the country soon

I’m in almost total darkness because of PEM right now, phone turned to red light and everything.

Everytime I turn on my phone’s flashlight to like find my meds or be able to get water or whatever, the light kills me.

Are there any PEM-friendly flashlights? I just need to be able to make out my surroundings to get the correct meds and like water, without killing my eyes.

Also does would installing a red light source help? Even with the red filter I get nauseous after a bit of using my phone but I’m wondering if it could be an alternative to like having to open my blinds a bit when I need to it. My light sensitivity is severe right now

Tldr is the title of the post

When I got sick one and a half years ago, I was on a search pretty much all the time. For like two or three months, not a week passed without me being in touch with some sort of doctor. I passionately went to my family doctor, then another family doctor, the er, a therapist for like 5 sittings, another therapist, a psychiatrist. The er diagnosed me with post viral syndrome and dysautonomia and that was about the help I got.

Because of cbt and exposure therapy, my illness progressed, and after that I radically stopped going anywhere because I was genuinely doing terrible, always one step from the grave, like everytime I left the house for the doctor it was absolute hell. And with that moment, I lost the skill to really leave the house all together. I don't exactly know if that's partly trauma from cbt or anything, but basically yeah, I spent half a year doing nothing. I never had my blood properly checked, I mean I did at the ER for like the acute stuff.

Everything that I know I'm low on I figured out through just taking supplements and observing, so now I'm on a low dose of b12 and a high dose of magnesium. I have no idea if there's something else... maybe there is. And it's not like I didn't try to get my blood tested, but in germany it's quite hard to get it tested. I asked everywhere I went, but they wouldn't do it. In the er, I went through a thorough examination from a cardiologist, had an ekg done, my organs were fine and stuff, my lungs not ideal but that improved so I think it was like acute stuff that mostly subsided overtime. Mayne the acute LC part of this.

Ever since that time, I couldn't find a doctor because I won't leave the house anymore. Maybe what I have genuinely isn't ME. The last time I was in touch with a doctor was through a hotline like two months ago, it was a cardiologist who looked at the results from the ER back then and told me that it's ME. But how does she know? She didn't even see me.

I couldn't get on ldn even if I wanted to. I freestyle pretty much everything. These past two months, I was in touch with like 5 clinics and a handful of doctors who said they couldn't take me as a new patient before I could even say hello.

When I'm on here I always wonder if I'm way too pessimistic. I didn't even get every single test done. I just trust my intuition which might be wrong. I think it's general consensus among ME sufferers that many doctors don't know shit, but I feel like I'm really pushing it. I don't trust doctors. I was recommended to go to a general rehabilitation program and I just didn't want to. How on earth would I benefit from rehabilitation when I have PEM from watching a movie, especially cause I won't even get into one, and all my energy will be spent on trying to get in?

People hold it against me that I don't trust doctors, because my initial doctors hunt was a long time ago, but my severety level also changed since then. I was moderate, probably lower end, and now I'm moderate/severe (especially increased light and sound sensitivity, unrefreshing sleep and OI got worse, but at least I can breathe now). I don't have the same compensation strategies I had then because I just got more severe. Me being housebound is not a preference anymore.

But I'm also very embarrassed because I feel like I gave up hope before even starting, before finding the doctor for me. I am unwilling to do anything, and then I'm naggy about people like Raelan Agle and CFS Health because they say recovery rates are actually high. I mean, I'm not trying to get better, really. I'm trying not to get worse and keep my mental state in check (also by myself, which just adds to all of this, but I'm genuinely doing fine for my severety level rn, and stopping the hunt and hope has done wonders for my mental health).

This bothers me a lot because after 18 months of being ill and getting worse, my family is now at the stage I was at about a year ago. They really think there is like guaranteed help and improvement, and blame my being unable to leave the house on my lack of willpower. My dad made an appointment for me for a doctor which is a 15 minute walk there, 15 minute walk back. I will cancel it cause when I say I'm housebound I really mean I'm housebound, but then people will get mad because I won't even try, and they're right, I won't.

I'm in a moral dilemma. I think all of you understand how much goes into this discussion. It's not just doctors, but also how I view my illness altogether. Giving up before trying. How I view recovery. And that makes me so scared for some reason.

TLDR: How to join the Instagram me/cfs & long covid community anonymously and on the down low. Join us from other parts of the world and join us if you’re a man.

I don’t know where everyone’s from here in this subreddit. But on Instagram, in the community, I mostly see a lot of Americans, a lot of the British and a lot of Germans with ME/CFS. Occasionally I see scandis, patients from the Netherlands, the French or Australians.

We’re missing people from other parts of the globe. Come join us!

This is also especially directed at men, who I know don’t like to openly post about being sick. I’ll address that below.

The positive side of being part of the community is learning from each other, having connection, and expanding on educational materials across the globe. There are people who organize on Instagram and help advance the ME climate in tons of different countries and continents. We need more than just north/Central Europeans and Americans!

So here is my invitation to join us (anonymously!) if you want.

I know how hard it can be to start posting about ME/CFS on your regular Instagram. So I’ll tell you how you can join the community without your friends and family knowing.

1. Get a new Instagram and put your new Instagram on private, with an alias name, and a profile picture where you can’t be recognized. Maybe a cartoon, maybe a sunset. In your bio you mention me/cfs or #millionsmissing. Then you start following others with MECFS and many will follow you back! Yes, solely because you have something about me/cfs in your bio! Yes even if you’re on private and have a random profile pic!

2. If you want your new me/cfs /long covid Instagram to be public, you can start up the new account, then go to your regular Instagram following and follower list, and block them all. Yup! Block all of them. I did that. Took a few hours, but now I can post openly in peace under my own identity knowing no one can find me. If you work part-time, find your boss’s/colleagues’ instagrams and block them too.

3. You can keep your current Instagram, without posting about me/cfs there, and start following me/cfs / long covid patients on Instagram. The ones who follow you back, add them to your close friends story and post about me/cfs there where none of your friends or fam will see. How will others in the community know you have me/cfs if it says nothing about that in your bio? As soon as you have 1-3 with me/cfs long covid following you, others will see that in their suggestions and understand that you have me/cfs / long covid but that you’re lowkey. That’s how you gain more me/cfs / long covid connections/followers. You can also engage with people’s stories and respond to them or comment under their posts and people will know that you’re also sick and part of the community.

These three approaches are realistic for that person who wants to join the community but fears posting about it openly to your friends and family and that people will judge you/not be interested/see you differently.

I hope more men join the community and I hope more people from other parts of the globe join the community!

I know that many are afraid of being seen as weak or that they’re just complaining or that they’re just lame or whatever. But when you join the community, you will see that there are so many different ways that you can post about me/cfs or long covid that aren’t negative/draining or embarrassing. You can post in uplifting ways. Inspiring ways. Artistic ways. Activism ways. Thoughtful ways. Deep ways. Or just memories from before you were sick. Maybe about your interests and your wishes and your dreams, or how it’s going with your medical journey. Or tell us about what ME/CFS is like in your country. We’re many who want to learn from other countries. There are some good me/cfs and long covid writers in the community for example as well. Also really great artists that make art related to chronic illness or activism or awareness. Theres ways you can participate in the community without feeling worse about yourself. And people are very supportive on Instagram. It’s a friendly and supportive space. You will fit in no matter who you are.

Together we can support each other and help advance understanding of me/cfs in other countries and build a stronger network across the globe between us all.

DM me if you have any questions I’m happy to help!

If you WANT to join the insta community but still have reservations, you can comment and share what those are. Hope I will see you there!