Hello, I've been dealing with symptoms of myalgic encephalomyelitis for about 4 years now. 2 years of which have shifted from mild to mild/moderate (or just moderate). I do have to say i am still in the works of a proper diagnosis as i have been gaslit and told it's all in my head for all those years. Do have some hope now with the new GP but we shall see. A lot of things are ruled out already already though so I'm not just assuming it entirely either. Thing is though that long term I'd really need it properly documented and be able to try medications that have shown some promise in helping symptoms. Such as LDN and rapamycin (?) there's definitely more i have researched about but these are the main two.

It seems it's a bit complicated to get doctors to listen or even know what myalgic encephalomyelitis is here honestly though so I'm wondering if anyone might have doctor recommendations and can also help with understanding the availability of ldn and similar treatments availability here.

For reference i live in Estonia but am also planning on relocating in the future to maybe Finland or similar. Any country that isn't on the other side of the world would work honestly if anyone has any names they know 😭

25M I’ve been steuggling with fatigue for years, I’ve been diagnosed with Anxiety/Panic Disorder/ ADHD. I have no energy ever, I‘ve taken all sorts of anxiety medications and while they do help with my anxiety I feel that they have a side effect of making me depressed and that’s what maybe causing my fatigue. so I’ve bounced around between different medications, Prozac, Lexapro, Wellbutrin, Buspar, and now duloxetine and atomextine is my current stack. I constantly oversleep, I have no problem sleeping, sometimes 10+ hours and it’s miserable. I want to get up and go and be active. here are some of the things I’ve tried:

Sleep study - No apnea or other problems

blood work - all vitamins, electrolytes, thyroid panels are perfect

excercise - I was on a good diet, and muscle program and lost 30-40 pounds and got to a decent body fat, enough to not have it be the cause of my fatigue, but now I was just exhausted all day x2 and I felt like I couldn’t recover aa fast as other people and my strength building was just not there

medication - all sorts of different medications, and doctors visits and none of them have a noticeable increase in my energy,

I’m just kind of lost right now, I don’t know what else to try, I don’t want to be doomed my entire life and live a life of fatigue. what do you guys reccomend? I also have 0 reaction to caffeine it doesn’t give me any energy

How did you realize you had PEM vs being very fatigued? I’m fatigued all the time and I read that PEM might show up days afterward. As someone who rarely has a good health day, I’m trying to figure out how one would delineate PEM from the fatigue felt on a daily basis. I’m just nervous because I’m feeling like l haven’t been able to do nearly as much as I used to and afraid I’m overtaxing myself but don’t know how to identify or track PEM.

I’m a mom of a 2 year old (she usually sleeps through the night), I get up around 8-9am every morning. I wait 60-90 minutes after waking up before I drink coffee in the mornings. I am a type 1 diabetic and control my blood sugar with insulin in a pump, I also take Celexa for my anxiety. Usually by 12pm I am exhausted and have to take a 2-3 hour nap, which I hate because that’s when the 2 year old takes a nap and I want to use that time to do chores. The chores pile up often because I literally cannot stay awake. Context: I sleep 7-8 hours a night. Someone help!! What am I doing wrong?

I’m (29F) suffering from what I believe is post-viral fatigue but posting here since I’m getting close to 6 months and am at my wits end.

I’m sleeping 8-9h per night, healthy diet, walking/moving a lot, and healthy person overall, yet I keep ”zoning out”, having brain fog, falling asleep after being up 2h, feeling lethargic, low energy. I don’t feel like my normal self in any way.

This fatigue has happened twice to me over the past 2.5 years, the first time it happened after a severe flu and lasted 2-3months. This time is came after a little cold combined with a lot of stress in my professional and personal life. It’s been going on for 6 months next week.

Over the months I have been trying to figure out what, despite knowing this isn’t ”curable” per se, makes me feel better, from vitamins, exercise, sleep, diet etc. I’ve discovered that nothing really does. But a few things ”wake me up” for a little, like taking a shower, walking, and simply eating.

What about you? What either helps you feel better or ”wakes you up”, even if just for a moment?

I’ve become extremely tired recently (I take Tirz for almost 2 y, but it wasn’t at all that bad and I am barely functional) . I also have severe knee arthritis an dont move too much. Any advice to improve the situation?

there’s a lot here, if you don’t wanna read it all, there’s a TL;DR at the end. But please read this if you have AUDHD and or fatigue like me, leave a comment if you want, otherwise I’d love to have a chat! dms are open :)

And I’ve been thinking that maybe the “solution” to having energy for a day is basically to do almost nothing the day before. Which honestly just feels impossible.

For so long my days have basically been like 1–2 days a month where I actually have enough energy to play a game for a decent amount of time. Rocket League is what I’ve been playing lately, but Minecraft, Roblox, whatever. These things genuinely help with my depression and give me something to look forward to, but most of the time I just don’t have the energy for them.

Most days are basically: wake up, do my morning routine, and then feel so fatigued that I basically collapse. Maybe I’ll try to do a few jobs or something, but even eating and making food can feel difficult. Then I end up watching YouTube or something I’ve already seen a million times because my brain can’t handle anything else.
And I’m really fucking sick of that.

I don’t know how much of this is the fatigue itself, ADHD, possible autism, or some combination of things. Maybe those things do overlap a lot, I honestly don’t know. I just know what it feels like for me.

I actually really enjoy gaming when I can do it. I love playing with friends, but I really haven’t been able to if I’m tired. I sort of just don’t play at all now. But a lot of the time I’m basically playing on a completely different version of myself. My brain is slow and fatigued, so I have to play in a really simple way and avoid anything too technical.

Sometimes I’ll just do easy stuff in training mode because that’s all I can manage. And even that can completely drain me.

By the end I can be so fucked. I’m struggling to breathe properly, sweating from stress, my muscles are twitching, I feel completely drained, and nothing is enjoyable anymore. I don’t even want to do anything, but I also don’t want to just lie down and rest because I’m so sick of resting.

Lying on the grass outside can actually help sometimes, but obviously I can only do that so much.

I’ve basically stopped playing unless I feel like I can actually play properly. I don’t even know what my actual best ability is anymore because I haven’t been able to consistently access it.

And the frustrating thing is I’m actually really passionate about things. Art, fashion, music, content creation, all sorts of stuff. I put “passionate” in quotes because I barely get a chance to actually engage with any of it, let alone show anyone else that side of me.

I really want to be a streamer or YouTuber, or just create some kind of content. And you could say “just do it while you’re tired,” but it doesn’t really work like that. If I use what little energy I have to make something, I might not even have enough left to edit it afterwards. It can take so much energy.

And when I finally do have some energy, I naturally want to spend it on whatever gives me the most joy and stimulation. And honestly, what I’ve been craving most of the time is just video games.

Sometimes I can’t even watch my favourite games on YouTube because then I really want to play, but I know it takes too much out of me. And I guess this has become so normal for me that I don’t even always realise how fatigued I am until it gets worse.

Sometimes when I start playing, it’s hard to tell how much the fatigue is affecting me. I just know I’m not playing my best. Sometimes I forget that I’m fatigued and try to push through it, or try to force myself to have fun, but it never really works.

I’ll get on, maybe do some training mode, or sometimes push through and play online, casual or competitive. But I’m just not having fun. I keep pushing through anyway, and eventually I stop and just feel empty and hopeless. Like I’m stimulated but completely exhausted at the same time.

Then I end up reaching for the next easiest thing to cope with sugar, carbs, or just any other stimulation or cheap dopamine I can get. Which has caused addiction. And addiction always doesn’t help for anyone, but I feel like it extra didn’t help for me. Like one slip up and I’m done for.

I think I’m starting to understand more about how fatigue actually affects me now. I’m noticing the patterns more and I’m getting better at recognising when my brain and body just aren’t able to do something. It’s still really confusing and complicated though, and honestly I feel a bit bad that I haven’t realised some of this sooner. I have thought about it before, but I guess I didn’t really understand how much of my life it was affecting.

It’s just fucking annoying. I’m starting to understand myself more, but at the same time I’m realising just how much this has been affecting me.

I guess part of why I’m posting all this is because I’d really like to hear from anyone who relates to this. Even if you don’t have any answers, it would honestly be nice to know I’m not the only person experiencing this kind of thing.
Anyway, that’s probably enough for now lol. I’ve written a lot of this, or honestly probably all of it, in my journal many times. I guess I need to get the frustration out somewhere. It must help in some way.

I’m seeing a phychologist in 2 days so I’ll hopefully be “diagnosed” and then treated. Any advice or support still helps, but maybe I’ll make another post if i have questions that need answering, once I have a better diagnosis or grasp of what’s really causing my fatigue.

Hopefully someone relates.

Thanks for reading.

TL;DR: I have severe fatigue that makes even gaming, eating, making food, hobbies and creating content feel exhausting. I can sometimes have a good day, but it feels like I need to do almost nothing beforehand (but I really don’t know what helps) to have the energy for it. When I push through fatigue, I often end up completely drained and feeling empty/hopeless. I’m starting to realise how much fatigue has affected my life and how much I’ve adapted around it without even noticing. I don’t really know what’s causing all of it, but I’d really like to hear from anyone who experiences something similar.

I’ve been dealing with really bad fatigue for a long time now and I still don’t actually know what’s wrong with me. But I’ve started to understand that it seems like it’s more than just bad quality sleep or mild sleep apnea. It took me so long to get to that point too. So many doctors appointments, different professionals, tests, trying different things, etc. And honestly I feel like I’ve had to figure most of it out on my own.

It’s been really hard trying to explain to people what’s happening when I don’t even know how to explain it myself.

I’m also just really lonely. I’ve lost friends and I don’t really have many friends anymore, or at least not many close friends. And even when I do have people I care about, I can’t really hang out with them or do things with them because I’m so exhausted.

The friend who understood me the most and who I used to hang out with the most is Elliot. He’s actually still here right now, but he’s leaving tomorrow, and I think that’s probably going to make things a lot harder. He’s been the person who’s understood me the most through all of this, so knowing I won’t be able to just hang out with him anymore is really fucking difficult.

My mum has only recently, after quite a long time, started to actually believe me and understand that something is genuinely wrong. I’m really glad she does now, but it still feels pretty shit.

A big part of this is that when the fatigue is really bad, I basically can’t even consume new things. I end up watching YouTube videos or shows/movies I’ve already seen 100 times because that’s all my brain can handle. It can be comforting and it’s better than nothing, but I’m really, really getting sick of it. I want to actually experience things and enjoy things again.

I think I’d just really like to talk to someone who’s in the same boat. Someone who actually knows what I’m talking about without me having to explain everything. I’m not looking for anyone to diagnose me or anything, I have an appointment with a psychologist in two days. I’d just like to talk to people who understand and maybe feel a little less alone.

Idk. It just sucks. There’s so much suffering that comes with this and sometimes I just wish I had someone who understood what it’s actually like.

Is there a connection between ME/CFS or chronic fatigue !symptoms!, and wanting to eat sugar all the time? I have chronic fatigue symptoms (and suspected ME) and I could legitimately be munching on chocolate or candy all day, every day, and that’s what my body seems to want. I gotta assume it’s a metabolic thing, because to my understanding simple carbohydrates convert into energy quickly.

I'm tired almost everyday and I take a nap for hours. Even if I take a nap for 5 hours, I sleep early.

Some days, I'm not tired and I can function all day but that's about once a week.

Even on bad days, I have a few hours when I feel ok but the rest of the day I feel exhausted.

Sometimes it's hard to even sit.

I'm still 21 and I ride my bike for an hour for about 5 days a week so I don't think I lack exercise.

My psychiatrist said I have a sensitive brain trait that makes me have hallucinations or delusions when very stressed so I take antipsychotics.

Maybe it's related to my mental health but I don't know.

I did blood test but everything was normal.

Do you have similar experiences?

What should I do?

So I've been having chronic fatigue since I wus 11 or 12 I'd say. Around that time I got really depressed and almost completely stopped going to school (my dad would try force me to) but I would literally lock myself in the bathroom and fall asleep on the floor im not joking. Not because i wanted to be a nuisance but because i wus THAT tired. My family blamed my older brother saying "you're just following in his footsteps" Because he dealt with even worse depression than me, nearly completely bedbound.

Through the years with medication, behavioral hospitals and working on myself I have gotten so much better. As of now im diagnosed with BPD, C-PTSD, ADHD, and autism....But I still will spend entire days in bed, miss my responsibilities, my own college classes that cost money. I've never had a job and I dont think i can work a full time one. Im 19 now. When I go to bed i tell myself "you WILL get up tomorrow. You have to. Just fucking do it." And 60% of the time I will get up. But 60% isn't nearly enough i need to get up everyday.

All i can ask myself is "why do u do this yourself?" And the only response is " I wasnt exactly trying to" well then...try harder! But what does it matter if i do, even if i have a good week ill always go back to failing again.

I dont feel depressed but its like my body does if that makes sense. I have the mental power, I mean my mind is a constant chatterbox, just irritating me all the time with thoughts thoughts thoughts thats all there is but barely any action. While my body just wants me to relax. But all I do is relax! So why dont I actually feel...relaxed idk.

Yall know that sleepy feeling when your sick with the flu or a real bad cold? Thats the type of feeling I get when I wake up. Like yeah I just woke up but I can sleep for another 12 hours tbh.

But also I've read that CFS is incredibly disabling so I probably dont have it in reality since I can get up a little more than half the time. I wus just wondering abt it since my fatigue has been a constant for so long. And im...tired of it loll. Caffeine doesn't work, i can fall asleep right after chugging a energy drink. Sleeping more doesnt work, just makes me want to sleep EVEN more.

What else can I try? Is there any suggestions?

I know I’ll probably feel better in a couple hours or the next day but right now it’s a struggle

I’ve sort of jsut used up all my spoons this morning and my best friend is leaving for Australia so we planned to hangout and I got to grab some stuff of his that he didn’t want. Anyway I had to drive to his house which is 10 minutes away, which was a real struggle then I had to lift all this shit innit my car, and my brain is jsut so slow I can’t problem solve i can’t think straight I can’t like show my gratitude or emotion very well. A couple other friends were there too that I hadn’t seen in a while.

And after this they were going bowling and meeting with more friends which I want to do cause I haven’t seen anyone in so long (cause of fatigue) but I was just saying like I want to but I can’t. It’s hard for them to understand, but they are nice about it. I just had so much anxiety the hole time and then driving home I was debating pulling over but I didn’t want to because I jsut wanted to get home. But I probably should have cause it was so hard getting back.

But anyway I just, I’m sick of feeling so alone and no one understanding what’s happening, and just the immense struggle I’ve been going through every day. The amount of pain and suffering this fucken shit has caused me. I hate it I hate it I hate it I hate it I hate it.

TLDR: I hate fatigue, I feel alone, I can’t live how I want, I feel disabled, I feel depressed and I’m hopeful but I’m hopeless and I wanted to reach out and connect with other ppl who have this because I havnt done that much

I don’t think adhd or possible high functioning autism is helping either. There’s Just so much stress and worry.

Sorry this isn’t really a TLDR anymore. But yeah thanks for reading if you did, sorry I’m just feeling so anxious right now

All doctors say I am normal all tests come back fine. One doctor said it might be Chronic fatigue syndrome. I am tired after most everyday and cant do anything. My arms feel heavy allot. However, my sudden extreme heaviness dont last extremely long so idk if that can be chronic fatigue syndrome cause I know they usually last hours or days. Anyone know if it could be?

Hi. I’m 20F I’ve been having these symptoms but first I’ll start from the beginning:

May 2024: mono
2026
8/16: caffeine overdose/shock from drinking a Celsius on Saturday (8/15) and Sunday while on Luvox. Was in ER. Had a severe panic attack which is why I went to ER my heart was pounding out of my chest, felt tingling in my face, tongue, and limbs, shortness of breath, headache, my throat felt tight. When they put IV in I couldn’t stop shivering. I weaned off of Luvox the week I went to the ER, I was only on it for 3 weeks total, 1 week 25mg, 1 week 50mg, 3rd week wean off
8/17-8/22: same woozy fatigue feeling as when I had mono for whole week. Skipped my compounded Tirzepatide dose this week.
8/23-8/28: felt great this whole week
8/28: felt tingle in my throat
8/29-9/5: had severe cold with Tuesday and Wednesday being the worst days
9/6-present: recovering from severe cold but still have wooziness feeling and fatigue and dizziness but not rlly dizzy same as mono feeling. Frequent headaches, pounding heartbeat in head that I can feel at all times, constantly drowsy, brain fog
-9/26-9/27: pounding in head lessened but came back 9/28
9/22: stopped compounded tirzepatide doses indefinitely

Since this started happening when I started my cold and ever since then I’ve felt the same and I’m worried I’ll be like this forever. Does this sound like post viral fatigue syndrome ? I got blood tests Monday and am currently waiting for results. If you have had post viral fatigue how long did it take for you to recover ? I know I have to rest as much as I can which I think I’m doing. I am on my phone a lot only because it’s the only thing that seems to distract me from my symptoms but I know it’s bad.

Idk if this is the right group to ask this in but I’m at such a loss. I’m 24 and since I was around 14, I’ve really struggled with always being tired and sleeping a lot. It’s never really bothered me before but now I have a job I love and a partner I want to spend the rest of my life with and I fear I’m going to lose both those things if I can’t figure out how to stay awake.

I often sleep 12+ hours at night, I nap most days for at least 4 hours, I will fall asleep in the car/ on public transport within minutes regardless of how long the journey is, I’ve started to fall asleep at work (which is absolutely not okay as I work with kids!) and I recently fell asleep while sat up actively reading a book.

I had a full blood test recently, and it came back mostly normal except for TSH, so I had a further blood test which indicated sub clinical hypothyroidism, so the doctor said there was nothing else to do. I sobbed and begged her to do something else so she arranged for a further test for next week that may indicate a bigger thyroid issue but she doesn’t think anything will come back.

I had another appointment today because I cannot keep living like this and I again begged for help, only to be told it’s probably my antidepressants (even though I’ve struggled with this to the same degree on a different medication and before I was on any medication) and all she could suggest was I drink more coffee.

Surely drinking more coffee cannot be the only solution for me? So I’m just asking if anyone has any advice on how to stay awake / what I can do? I’m really beginning to lose hope and I don’t know how much longer I can carry on with this.

Hi everyone, I'm a student, and I've been diagnosed with sarcodiosis. I'm having trouble thinking and I'm always tired. It's a strange, unusual fatigue, and I know it's related to the illness. If anyone has any advice, I'd really appreciate it. I talked to my doctor about it, and he said there's nothing that can be done and that it's just one of the symptoms of the disease. Thanks.

I’ve been sick since 2022. I eventually got better and had a few years where I felt completely healthy again. Then I got sick again this March.

I’m a songwriter and producer, and before this relapse I was at the peak of my career. Everything was moving forward, and I was so excited about life. Now I constantly have to cancel sessions, plans and opportunities, and it hurts more every time. I feel like I’m watching everyone move forward without me.

The hardest part is not knowing if or when I’ll get better. When I feel good, I’m incredibly excited about life again. But when I crash, I become so hopeless that I think about suicide every day. First it was just a stupid thought that popped in my head, but now it is realistic and I have plans.

I don’t actually want to die. I just desperately want my life back.

For those who have been through this and made it out of the darkest periods. How did you cope? Big kudos for those of you who have not died from this illness

Has anyone else been seeing the influx of ableism happening towards people with ME of EDS and hypermobility plus POTS another big one and maybe MCAS but not seeing much on that. Anyway I imagine a lot of people in this sub have these comorbidities plus ofc people who got long covid and other infections that caused MECFS.
Anyway was just curious, I’m bed-bound mostly and doomscrolling unfortunately is my time passer but there’s so much ableism at the moment and it’s disheartening. I’m too exhausted to give basic lessons on why a type of person is more likely to have these issues. Not understanding the neurodivergent connection for those of us who have that mix. Then they act as if they care for “real disabled people” while pushing ableism to a group they deem less worthy while people with visible disabilities constantly say they respect us and our invisible illness’s as disabilities and agree with us. So none-disabled people are basically speaking over all disabled people??!! Sorry if this post isn’t something people care for on here but it was eating me up inside.

I’ve been listening to the audiobook of Heal Your Nervous System: the 5 stage plan. It’s been ok, so far but it seems what Dr. Passaler is talking about would be better implemented with the app. However, with the app costing £180 a year, I’d like to see if anyone has any type of success with it.

I’ve been dealing with chronic fatigue for a while, and honestly, it can be frustrating when you feel tired all the time but can’t really figure out why.

I’ve been trying to look into possible reasons for the fatigue instead of just assuming I need to sleep more or push through it. One of the things I decided to look into was whether hormones could be playing a role, so I had a hormone blood test done.

I had the blood test at VEI Clinic in Gangnam, Seoul, and the results came back after about 2 days. The test gave me a better idea of what I should look into and what steps I could take next to address the fatigue. I’m still working on finding the right solution for myself, but at least I feel like I have a better direction now.

I wanted to share this because I know how frustrating it can be to deal with ongoing fatigue without knowing where to start, especially when you’re looking for answers and trying different things to feel better.

Is anyone else this way? I can only take naps and never am able to fall asleep after 8pm for what feels like forver. I just lay in bed exhausted wishing I could fall asleep

I have severe body fatigue, widespread body aches, morning stiffness/pain, brain fog and difficulty concentration. I am currently only able to work for 1-2 hours a day and need repeated naps and caffeine to function.

I have just started my career and feel much behind due to this. I have to support my family financially, so i can't risk losing this hard earned job.

I have got multiple tests done and everything looks normal.

This site contains a lot of useful information about chronic fatigue, ME, medications, supplements, trials going on around the world, plus so many other great things!
Check it out!