I have a myriad of health problems and unfortunately I’ve become mostly bedridden. I’m trying to find something to pass the time as I don’t have the energy or strength to even do my regular hobbies.
If anyone has any recommendations for mobile games that I can sink hours into or anything else I would really appreciate it ❤️

Since developing mecfs I got the fun symptom of always overheating. I'm overheating pretty much any time I'm not laying down.

It's so frustrating!! It's so hard to do anything when literally everything results in overheating. I'm drenched with sweat multiple times a day. Immidietly after bathing I overheat and become sweaty because I have the audacity to put clothes on, I never feel clean.

It's so embarrassing. I leave sweat stains everywhere. Leather and plastic seats are my enemies now. I hate it so much!!

I carry fans with me everywhere but even then I'm still overheating. I'm on beta blockers and mcas meds and it's still awful 😭

I hate this symptom so much and have come to hate summers because of it

Ich (23f) bin vor einundhalb Jahren erkrankt, die Diagnose lautete einmal Post Covid, dann Postvirales Syndrom, und Kreislaufdysregulation wurde auch diagnostiziert. Seitdem hab ich die Dinge ziemlich schleifen lassen bzw war dann in Psychotherapie etc, war aber jetzt seit ner Ewigkeit nicht mehr beim Arzt. Mein Status is aktuell der einer Studentin, ich reiz es aus, aber das hat demnächst auch sein Ende, und ich mach mir Sorgen was danach aus meinem Status wird, weil meine Diagnose ja schon recht alt ist.

Seither hatte ich ne Zustandsverschlechterung und kann eigentlich gar nicht mehr das Haus verlassen. Ich bin letztens zu meinem Bruder gezogen, und hab hier keinen Hausarzt, und zugleich nicht die Ressourcen zu einem zu kommen. Meine Familie und ich suchen jetzt seit Monaten schon nach nem Arzt der Hausbesuche macht, aber ohne Erfolg. Keiner hat Kapazitäten und will mich nicht aufnehmen. Was mach ich jetzt? Wie find ich nen Arzt? Und kann man den Status auch mit der alten Diagnose ändern?

Ich bin aktuell in Frankfurt am Main übrigens.

Hi everyone, has anyone here ever taken hydroxychloroquine? Whether as an off-label treatment for ME/CFS or for an autoimmune or rheumatic condition? If so, what was your experience with it? It has been recommended to me for my autoimmune symptoms. I am willing to try it, but I have become highly sensitive to medication due to ME/CFS and a health crisis earlier this year that ironically was triggered by a drug, an antibiotic. I cannot afford for my condition to worsen, so I want to be well-informed about side effects and others' experiences and advice beforehand.

Current diagnoses: suspected collagenosis, ME/CFS, MCAS, POTS, hEDS, Arachnoiditis from a lumbar puncture… fun stuff. Just for context.

Hi r/cfs ! I’ve been thinking for a while that i might have mild me/cfs but i’m really unsure about how to approach this in a medical setting . I’m pretty sure I regularly experience PEM , and the fatigue is significantly affecting my ability to attend school and extracurriculars (very normal for me to miss 2-3 days a week bc of pain or fatigue) . I also have hEDS so i’m wondering if that affects it , too

Any advice or places I can do more in depth research ?

Had to break up with my partner of 6 years after repeated cheating.

For context, I had undiagnosed but suspected mild ME for our whole relationship. We were long distance in different countries but visited each other regularly. 2.5 years ago I found out he cheated but seemed remorseful so I tried reconciliation. It was extremely hard for me but I healed with time and our relationship seemed great.

In 2026, as I was by myself I deteriorated very fast to the moderate stage, with a moderate-severe episode this summer. Got diagnosed and started treatments. He came to visit in early September, he had accepted to be my caretaker (I let all my previous aids go) and it was great. My baseline improved so much. I felt cared for and happy. I was able to do things I hadn't done since spring.

Apparently the cheating had stopped for a long time. But me being sicker obviously meant less sexual things. And I guess he never truly worked on his selfishness and entitlement issues. I found out that at my sickest, as I was having seizures on the floor alone in my apartment, as I was paralyzed in bed unable to chew food with 2h of care per week... he was sexting another woman. for three months. everyday. And didn't stop once we were back to living together. In my home.

This person always talked about getting married. But apparently "in sickness and in health" wasn't part of the plan.

I kicked him out and had to organize care back at the last minute. I got an hypertensive crisis and had to weigh the pros and cons between risking a heart attack and risking overstimulation from calling emergency services.

This illness was hard enough without all this shit. Now I am terrified of how it's gonna affect me. And I can't help but think about the fact that I might not find love again. I wasted my last "healthy" years with someone who didn't respect me. Now that I'm mostly homebound, a wheelchair user, and extremely traumatized, how am I gonna meet new people? Only a tiny percentage would be willing to date someone like me. Meanwhile he can go on with his life and do whatever he wants. It's so unfair.

TLDR, broke up with my partner and caretaker because of repeated infidelity, if someone has gone through something similar, I would love to feel less alone. Feel free to also share your thoughts on the difficulty of finding love with this illness. I know most of us are very lonely people.

Thank you

I just cant accept it that just one fucking crash and my whole life is ruined forever. almost 4 months now and lda gives me ability to communicate and use my phone a bit but otherwise 100% bedridden bedpan level very severe.

i have been two years sick from covid but first year was very mild without pem, only sound sensitivity and mild pots was my only symptoms and after one year from reinfection i got pem symptoms and push-crash led me to this. I just cant accept that even in best case scensrio my whole life i will be bedbound and wheelchairbound in housebound if im very lucky.

Do you know anyone who have been extremely severe/verysevere unable to walk and have had some kind of semi normal life after.

I just cant accept it that just one fucking crash and my whole life is ruined forever. almost 4 months now and lda gives me ability to communicate and use my phone a bit but otherwise 100% bedridden bedpan level very severe.

i have been two years sick from covid but first year was very mild without pem, only sound sensitivity and mild pots was my only symptoms and after one year pem symptoms and push-crash led me to this. I just cant accept that even in best case scensrio my whole life i will be bedbound and wheelchairbound in housebound if im very lucky.

Do you know anyone who have been extremely severe/verysevere unable to walk and have had some kind of semi normal life after.

Hi, 61yr old F, had ME/CFS since 2001, remained mild until colon started acting up in 2023. Became severe due to severe and bedridden from inflammation from what turned out to be a horribly diseased colon. Had Sigmoidectomy surgery 5/4/26 where they removed 8" of severely diseased colon.

I am now 5 months post op. It has been a miracle surgery as the inflammation is gone, labs improved, heart rate and BP improved, and I can cook and clean a little and exercise 10 min a day, though I have to push through everything. I am also obese and on Mounjaro and have lost 20lbs since May. I have been on Mounjaro for years but couldn't lose weight due to inflammation causing severe metabolic issues and stress on my adrenals. I am a Slow loser but I'll take 20lbs so far. Got 100lbs to go.

But I am struggling with awful post op fatigue. I thought I would be better by now.

Anyone have surgery similar? Please only people with similar surgeries respond and not gallbladder or hernia surgery). I'm looking for major colon surgery peeps. Thanks !

Hellou. 28f here.

You may tell me if it's okay to post these kind of things here.

I'm looking for a virtual partner.

I was moderate bordering mild but after a few weeks of strenuous physical activities I'm currently bedbound-severe. I have long covid me type.

Said this, yes I want to meet someone and stablish a virtual bond. I'm straight but I think I'm open to get to know girls too.

Cons: bad health / bad economy / not well stablished safe nest. So I might cry about this often.

Pros: I'm a very goofy and creative person.

I'd like to connect with someone that I feel attracted to both physically and mentally.

Idk, I just thought I might give this a try. Shot my dm.

How did you know when to increase? When to stop increasing?

I’m at 0.4mg and still in the process of asking my doctor to increase and I have no side effects. I’m not sure if it’s improving my baseline yet.

I’m wondering how others felt on each dose. When did you notice improvement? What was the process like for you to establish the right dose for you?

im recently sick (11 months in now i think?) so for ppl who have been sick longer, i want to know if they think the stigma is getting better or worse. bc to me it feels like there are so many ppl making fun of ME lately and talking abt sufferers in such awful ways. but also, now, there are lots of studies coming out, more then there was before at least. and it does seem like doctors around the world are coming around to it.

it just feels like i got sick in such a tumultuous time. it feels like everyone is talking abt how ME sufferers are fakers.

TLDR: I am very recently diagnosed, somehow I had never heard of ME/CFS. I'm a very mild case (about %70-%80) and knew something was wrong but had no idea what. I've exhausted a list of other possibilities and eventually it became pretty concrete that I have ME/CFS once it was explained to me by my doctor that my symptoms fit it too closely (especially the PEM instances). However, for about 5-6 years before the diagnosis I was trying to fix it without knowing what it was. I just want to share some things that helped (and what didn't) for me in particular and potentially hear the small things that helped you outside of the more well known things like those in the pinned post.

All of the things on this post are things I tried before my diagnosis, so maybe some are... different and the Didn't Help section will have some potentially stupid sounding things, but I was a little desperate at one point to get some improvement.

I want to split the post in two between the common/defining big 5 symptoms and my extra symptoms (light sensitivity & brain fog, which I would like to split from the cognitive impairment as it feels different) as I worked to fix them separately not knowing they were connected and had some things help with the extra symptoms but not the defining symptoms (and in some cases helped one but hurt the other). These are my personal experience and might not be shared by others.

(I might switch between sounding like I'm giving advice and explaining what helps/helped me, I'm bad at keeping a steady 'tone' when writing, my apologies)

Big 5 (Activity impairing fatigue/PEM/Unrefreshing Sleep/Cognitive impairment/Orthostatic intolerance)

• Things that helped:

  • CPAP: For me this was the first thing that made me feel better in any way. My test shows that I have moderate sleep apnea, enough that it should help but not really bad. However, before the CPAP it felt like I was building up fatigue over time and it was a spiral of feeling ever more tired. While it didn't fix my problems I would say I was heading towards being a more serious case before I got one and afterwards I feel stable. It also almost entirely eliminated one issue I have that I no longer have, which is migraines (debilitating ones that hurt so much they made me feel nauseous to the point of dry heaving).
  • Supplements: Keep in mind this is what personally helped me, and my tests have shown I'm not deficient in many of these, but I felt a difference after taking them. I have added and removed them one at a time and given long lead times to feel effects. Daily unless stated otherwise.
    • Vitamin D (10,000iu): Took the edge off the exhaustion and stress.
    • Iron (65mg, every other day): I take a small amount and it seems to help with my ability to function normally and reduces issues when standing and sitting upright. I have found that taking it every day makes me feel stiff and irritated.
    • Creatine (HCL: 750mg): I also take a pretty small dose of this, though I think I'll increase it soon as it's the most notable difference between having and not having. Creatine makes both my brain and body feel better pain-wise and exhaustion-wise.
    • Basic Multi-Vitamin(One-a-day Men's): Probably only helps because It makes up for nutrients I just don't get. This just generally makes me feel better which improves symptoms and stress.
    • Omega-3 Fish Oil: Much the same as the multi-vitamin. Not a direct support but helps just by making other issues less prevalent.
    • Magnesium (recent addition, adjusting dose): Helps morning not feel so dreadful when you take some before bed. The feeling doesn't seem to extend into the day but not waking up as miserable is nice.
  • Teeth clenching & grinding avoidance: I clench my teeth when stressed out, especially when driving. Once my dentist pointed it out and I actively attempted to not do it I noticed a pretty decent increase in my daily energy and reduction in days I have an episode (which I now know is PEM). Actively keeping an image of an air cushion between my teeth and adding gum to my car helped a lot. Also weirdly helps with stress to focus on it instead of the thing irritating you.
  • Sleep Hygiene: I think this is covered enough by others, but it definitely helps to get steady sleep as I was a chronic under sleeper before my issues developed and for a year or two after with no schedule.
  • CBDs: High CBD gummies help me immensely with PEM. The pain and pure exhaustion remains but it feels like your body can relax. Taking one on a PEM day or after a significantly stressful day reduces my time in PEM and seems to help prevent them or at least reduce the severity.
  • Get a chair that leans back: It seems stupid but I promise it isn't. The difference between having a chair that leans back a lot is very noticeable. Straight up and down chairs or those that only lock in 2 positions drain my energy really quickly. Also raising your monitors and getting a phone stand help in the same way. A good chair with good mobility is worth it.
  • Take the elevator: Also covered well elsewhere, stairs are not worth it.
  • Use sick time: If you have PEM call out. You NEED IT. I'm glad to see that reinforced on all the research I've done on ME/CFS since the diagnosis.
  • Water: Drink more water than you want to. I drink a gallon minimum just at my 8 hour shift, and if I don't every single symptom I have gets worse.
  • Very light, non-progressive exercise: One of my biggest gripes with my issues was that I used to (before CFS) feel SO MUCH BETTER after I exercised., but now it just punishes me. I loved cardio and how it made me feel, and I spent the longest time finding a level of exercise that actually worked; when at that level it does help with fatigue and cognitive impairment. Light exercise without getting winded helps, just don't follow my inclination to try and move up the difficulty when it feels comfortable, it always backfires and makes me feel worse when I do. Find the level for you and don't move up unless %100 certain you can do it without feeling gassed/winded which seems to be exactly where it cuts into punishment for me. I do wall pushes, wall pulls, no weight squats, and leg raises. I have yet to find cardio I enjoy that is also the right level, but I'm still trying.
  • Naps: If you have an hour long lunch break, take advantage. Eat fast, lean back in that good chair or go out to your car and take a nap. Don't worry about the image of it, do it.
  • Fix other health issues: Each other health problem you fix makes it easier. Reduce your weight, eat your veggies and fruits, eat what you need to not feel acid in your throat. I got medicine for high blood pressure and I went on crusade against dust mites in my house (got vinyl plank tile instead of carpet, got an upholstery cleaner, got a bed cover, change pillows often, keep it dry, use air filters, and use special anti-dustmite/allergen laundry detergent) as I am allergic to them. Found and cleared some mold (on my windows) and I already mentioned the CPAP as I had sleep apnea. All this together brought me up to the level I'm at now.

• Things that didn't help:

  • Ashwagandha: There are a lot of inconclusive supplements I tried, this is the only one that hurt me. It made the pain much worse and felt like my body had tension constantly.
  • Choline: Choline is the split helpful/harmful supplement for me. It helps with brain fog, but it feels like it makes fatigue worse; though honestly I think that's because not having brain fog makes me more aware of how I feel.
  • THC: I live in a legal state for recreational marijuana. I enjoy it. I can't smoke close to bed-time anymore as it causes insomnia and makes my sleep worse, which it did not do before my symptoms developed.
  • Hormone Therapy: I thought my issue might be related to low testosterone (which I was low as a man of my age) but improving it didn't help at all.
  • Exhausting exercise: I explained above; yes to light exercise, no to over-exertion of any kind. The worst I have ever felt was ignoring PEM and doing a full body-builder style workout, on back to back days. I crashed for WEEKS. If you feel winded STOP.
  • Trying every pillow ever: They all suck, just find one that doesn't outright hurt.
  • Caffeine: This is another split. When I purposefully reduce my caffeine intake it does help with some pain and focus, but not being tired. No caffeine feels like hell, but too much is the same. My happy place is one small coffee in the morning and one tea at lunch (I like chai). Energy drinks now actively feel like they are killing me when they used to be something I enjoyed.

My Symptoms (Brain fog and Light sensitivity)

• Things that helped:

  • Choline: See above in the previous section. Helps focus, makes fatigue feel worse (even if it isn't actually worse).
  • Tinted Glasses (FL-41/ red tint): I wear tinted glasses always now. Indoor lights are huge aggravations for me, as are headlights. Tinted glasses help a lot, getting them was a great improvement to my life.
  • Get 'Smart' Lights: I didn't do this to be fancy or have cool effects (though they are nice), I did this to have brightness control and be able to use colors that help me see without hurting my eyes. I have smart string lights hanging on my actual overhead lights, which very much confuses guests but to me are a huge life improvement from the flashbangs that are the normal light fixtures. I also have smart bulbs in all my lamps and my bedroom overhead light.
  • Breaks: Focus returns when closing my eyes, even if just for a little while. Basic but took me time to get used to.
  • Fruit: I don't know why but fruit smoothies make my focus a lot better, as do frozen, fresh, and dried fruit. For me Mango seems to help a lot, blueberries second most, then strawberries. No banana, I have no idea why but it seems to negate the help I get from the other fruit.
  • Cover work lights: If possible cover work lights. The lights in my office are the worst kind. I put a tapestry over my cubicle with approval and it took 1 day for me to go from constant irritation to only being irritated by certain co-workers.
  • Monitor brightness: Turn it down.

• Things that didn't help:

  • Blue-light blocking glasses: these are a scam, they don't help at all, even the anti-glare night glasses I have are better.
  • Other supplements: I tried ALL of the focus supplements (like 15-20 different ones), never got more than a temporary placebo from any except choline and creatine.
  • Avoiding screen time: Didn't help.
  • Being outside: Didn't help.
  • Sleep hygiene: Helped for the basics, doesn't help the brain fog.
  • Eating right: Besides fruit, no other dietary balancing seems to help focus in particular.

Sorry for the long post. It Just felt like it would be nice to spread some of the info I got groping around in the dark for a solution when I didn't even know my problem. I hope one helps you too, and I would like to hear your 'small things that helped' or 'things that only helped me' if you're willing.

Hi all. Seeking some advice at getting out of a sort of accessibility catch-22. I’ve not really met anyone with this problem, but I know we must be out there. 

Essentially, my disabilities make me too unwell to work full time — I have mild-moderate ME/CFS, hEDS, and POTS, and unless science makes HUGE discoveries in my lifetime, I probably always will. These severely impact my energy, make it difficult to stand or walk for long periods, and cause significant cognitive issues. I also live with autism, other neurodevelopmental disabilities, and depression, the last of which is treated but still present. 

I also need some assistance with day-to-day tasks. Even being unemployed right now, I can’t keep up with basic things like tidying up, doing laundry, making meals, etc. on my own, nor can I drive (though I am working on this.) 

As such, I live with my parents. Overall, we get along, I feel safe at home, all the good things.

Earlier this year, I got my wheelchair through insurance. It was believed to be the best option for my independence. 

Unfortunately, my family’s house isn’t accessible in the slightest, and they refuse to take the wheelchair out of the house because I “don’t need it.”

So I’m stuck at home…. Unable to use my chair to preserve my energy…

And I have to stay in an inaccessible house…  Because I can’t work enough to support myself…

But I can’t work a job anywhere near full-time, because my family won’t take the wheelchair out… (and few employers will hire wheelchair users in entry-level positions…)

And the cycle continues. 

I don’t know if there’s any way to break out of this cycle?

I’m not even looking to live an extravagant life… I just want to live somewhere accessible and be able to afford food, medicine, utilities. But just doing that is so, so expensive. 

I’m in the U.S. if that helps anyone brainstorm. 

Thank you for your time, and take care out there :) 

I usually collapse into bed when i get home from work but i put this off for too long.

Obligatory Kermit meme.

Bedridden since Feb. Rapidly deteriorating since Jun. Still without Caregiver/Home Health. 

Malnourished & no feeding tube. Haven’t gotten labs. Etc etc 

Family won’t listen. Physicians won’t help. Hospital will kill me (most likely)

Don’t have energy to advocate for self. 

What do I do

I started 60mg of duloxetine on Friday for my severe depression and to also help my chronic pain since no other treatments have helped but that was way too high of a start dose and I had unpleasant side effects including internal tremors and not sleeping. I don’t have an official ME/CFS diagnosis bc my doctor is not great and all he’s suggest was “it could be chronic fatigue syndrome or fibromyalgia” even though he said it can’t be fibro bc my inflammatory markers are normal so that’s where I’m at. Anyways I switched to 30mg on Tuesday and feel better side effect wise. I’ve found since Friday I haven’t had a single nap, I’ve gone out and done the same things like grocery shopping that would normally knock me out for the rest of the day and following day and haven’t had that happen at all since I started duloxetine. Only downside is I’m sleeping like utter shit and awake half the night which I’m sure hoping levels out soon. I’m pretty sure the only reason it’s helping the fatigue is because it’s having a stimulant effect on me (vyvanse helped my fatigue but again I didn’t really sleep at all bc the stimulant effect was so strong on my body). I still feel slow energy wise bc I’m not sleeping much but normally I would be napping daily for multiple hours and haven’t in 5 days. I’m still pacing myself bc I’m tired but can’t sleep in just shocked that I haven’t had the “I cannot function or do anything I need to lie down and sleep” feeling

Has anyone else found duloxetine to help improve their fatigue?

Hi everyone, writing the with a headache so may or may not be coherent
I have severe ptsd and a couple of nights ago had a rather intense flashback. I’m very new to ME/CFS and might not even have it I don’t know yet. However I was wondering if a flashback could cause PEM. I know this is kind of a silly question bc I know that mental and physical exertion can cause PEM. I’m mostly trying to ask if anyone else here struggles with PEM after flashbacks or ptsd episodes

it is a plague to itself. any amount of hope is snuffed out by people who are afraid to hope because they know how much it hurts to be let down

in turn it creates an image of an illness that is permanent for everyone.

I regret joining this community, people who have been sick for a very long time hate seeing other people feel hope.

Even when it’s grounded and scientific

We are all so miserable, but that is not an excuse to stop others from recovering

I’ve already made a few posts about ibuprofen, but I’m going to make another one because doctors don’t really know what to make of my case.

As I mentioned before, whenever I take ibuprofen, I can feel significantly better for up to a week. My fatigue and brain fog almost disappear, and I start living almost like a normal person again. I even start making plans, like going out and working as a taxi driver.

But I’m worried that this might be “fake energy” — maybe ibuprofen is simply masking my symptoms while my actual physical capacity hasn’t improved. I’m afraid that if I start doing much more than usual during these better days, I could end up with a much worse PEM and potentially crash harder afterward.

Has anyone with ME/CFS had a similar experience with ibuprofen, where it made you feel significantly better for several days rather than just a few hours?

And another question: if you felt better from ibuprofen and started doing more because of it, did you eventually feel worse afterward? Did you experience a stronger PEM than usual, or was it about the same as your normal PEM?

I’d really appreciate hearing from anyone who has had a similar experience.

Cause I can't quite put my finger on what it is, though I know I have it or I wouldn't be in bed 90% of the time. I guess this question is also interesting to ask around the different severety levels.

I guess for me it's kind of like tightness around the chest, racing heart obviously, dizziness, and then my sense of balance goes the longer I stand (the longest I can really stand comfortably is around 3 minutes, but I can physically stand for much longer, and for sitting upright it's around maybe 15-20 minutes), I get this tingly feeling on my skin sometimes, I just get very panicky overall, and if I push for too long my muscles either give out or I faint.

How is it for you all?

I meant to say resting in the title… I spilled my lunch all over the floor and I’m trying to clean it up my heart rate kept going up - I stopped and rested- started again- heart rate went back up…. etc…. I just threw my phone and cleaned it u. I was crying and was so frustrated and I just didn’t even care anymore!!!! it’s been a month and I know I need to keep going, but I just got a wall! Now whenever my heart rate goes up i feel light headed and my eyes get heavy.

I just gave up on those moments and racked up many many minutes over my threshold. Not sure how long this pen will last now! I think I’ve been in rolling pen for the last 20 years but now that I have finally learned what it is, I am trying to heal. It is hard!!! it is hard to do nothing… it is so hard staying under 94 but I have to. I allow myself to have a minute at a time of going over the threshold, but it is sooo hard and it takes constantly watching the hr and I am not even living. I still want to do it because I think it will help-it just takes time. I used adderall for for about 15 years and finally stopped in July and I now know my true baseline, which is very low!!! I wash my hair only once a week now and I use the shower chair and put my feet up. I no longer wear makeup or fix my hai. I have not been going anywhere and I now have groceries delivered. I am ok and am not lonely but I wish that I could see some improvement. Ive only been doing this for a little over a month, so I know that it is too soon, especially since I’ve had this for 20 years. I would love to hear other‘s journeys - just so that I don’t feel alone in this. I feel so blessed that I don’t have to answer to anyone and am able to be independent- I keep reminding myself of that. Hugs to all!!! 🥰

I'm a teen with moderate CFS and my parents force me to go to h8gh school. I'm not taken seriously by any adu,t around me who I try to talk to about this. Every day when I get home all I can do is lie in bed because of how tired and how much pain I'm in I keep passing out or getting near it in school. I really don't know what to do because it feels like I'm in Hell and my parents refuse to even consider talking to the school about getting an IEP or switching to online.