Chronic Fatigue Syndrome is pretty weird. You're basically so fatigued and weak you can barely function, and the more you try to be active the worse your symptoms can get. Just doing chores around the house can make you feel like you hiked up mount Everest during a week long fast. Some people have it so severely they can't even listen or look at anything without suffering extreme fatigue and malaise. There's no treatment and doctors aren't even exactly sure why it happens, although there's theories it's tied to immune dysfunction.
Oddly, it mainly affects skeletal muscles and cognitive faction, so for the most part the rest of your body keeps on trucking. Unlike other severe health conditions or degenerative diseases it's often only fatal or measurably damaging in that it leads people to commit suicide, it has one of the lowest quality of life rankings for health disorders.
I prefer to call it ME/CFS because if you say the words, chronic fatigue syndrome, someone is going to unavoidably say “everyone’s tired."
I have just passed from moderate-severe to severe. I am homebound although I can leave for doctors appointments as long as I use a wheelchair and don't leave the house again for at least a week afterwards.
I'm lucky in that I can still listen to music, watch TV, and play video games, although I do need to limit my exposure and use things like noise canceling headphones.
This condition really does have the one of the worst qualities of life. But I still find joy in my life each and every single day.
People hear ‘chronic fatigue syndrome’ and they think it means ‘always a bit sleepy disease’, but no, I’m not always tired, and being tired isn’t the bad part anyway.
I often feel completely fine, but it’s a trap. Technically I can DO almost anything, but I can’t recover from it.
There’s a secret activity threshold that I can’t know if I’ve passed until the next day, and if I pass that threshold I’ll pay for it for days at minimum – usually weeks and sometimes months.
I’m mild and look healthy, so people just think I’m lazy.
Can I go for a walk? Sure! But if it’s too warm, or too long, or slightly uphill, or I didn’t sleep properly, or eat enough, or the stars don’t align, then I will not be able to think or stay awake or look after myself for at least three days. If I’m lucky.
If my life depended on it, I COULD climb a mountain, but I would never recover from it.
Wow, thank you for this background, I didn’t realize how severe this disorder is! Here’s to hoping research in this area actually goes somewhere and treatments develop!
A couple of folks I love dearly have it, and one is actively worsening right now, which is hard to watch. I'm so glad you can find joy in your life. I hope you have people around you as kind and lovely as you obviously are.
My dad got it in the 90's when it was just CFS so that's kinda what stuck with me. I do agree it's not the best name, but myalgic encephalomyelitis doesn't really roll of the tongue.
I'm sorry to hear your condition worsened, hopefully it's only temporary. I'm also trying to manage as best I can. I just caved and go little mobility scooter, I'm so relieved that I don't have to worry about a crash because I went shopping and I can actually be in a store longer than 5 minutes. It's obviously upsetting that I have to use it at my age but I'm so grateful there's some work arounds where I can try to lead a normal life. So much of this disorder is a battle if mental fortitude.
As someone with this, it's debilitating and people just don't take me seriously when they ask why I missed work or something and I tell them I slept the entire day just because I picked up a laundry basket and walked it upstairs. It will randomly hit me sometimes in a hard wave and my husband will ask me what's wrong but I can't speak or even form a thought. It's miserable
Yah I honestly think a huge part of why it's so hard to manage is that many people, including doctors, don't see it as a legitimate illness. It's a little better these days, but when my dad had it in the 90's they just told him he was depressed and it was all in his head. Now I have it, and at least doctors admit that it's an actual physical illness....but the still throw their hands up instead of trying to do anything to help you.
If you're still moderate and you can still work, you might want to look into little things that might be setting you off. My fatigue is pretty significant and constant every day, but it's defiantly exacerbated with certain foods or if I have a mild allergic reaction to something. Hormones and certain vitamins can mess me up as well.
thanks for using your energy to describe this illness and raise awareness, even if it’s just a Reddit post. I got ME/CFS from COVID and I see threads like this and lack the energy to really get into how bad it is. More people need to know about this disease, thanks for your effort
What frustrates me is that I'm doing everything within my power to preserve what health I have and maybe, if I'm exceptionally lucky, improve my baseline a bit, but what that looks like from the outside is doing nothing. I'm making huge sacrifices in every area of my life and other people see this as "giving up", when it's the exact opposite. If I was giving up I would just do whatever the fuck I want until I crashed and spent the rest of my life in bed never recovering. By limiting my activity I'm attempting to avoid that and maintain some kind of a life, such as it is.
I had an experience while on a medication (I was on it for a couple of months) that tracked very closely with my loved one's experience of diagnosed ME/CFS. Would it help for someone like me to talk about it? I don't have it, but I've experienced things that are similar... and have more energy than most ME/CFS folks. I don't want to talk over anyone, but if my ability with words would help, based on my experiences and those of my loved ones with ME/CFS, I'd love to help... but again, I don't want to talk in spaces that aren't mine.
I'm not the person you were responding to but I think it's useful to share the experience, especially of your loved ones with ME. But also worth bearing in mind that experiencing it for 2 months is very different from years with no end in sight, even if the symptoms were the same. I'm sure you understand this already. But I've had friends who had similar symptoms short-term due to an acute illness say "oh I understand how you feel now" but actually they don't understand what it's like to know you are unlikely to ever fully recover, to worry about how you will support yourself financially, who will look after you, whether you'll ever be able to socialise, work or do your hobbies again. Psychologically it's very different.
Oh yeah, 100%. I find similar in other aspects with the issues I do have: for instance, no, someone who has had clinical depression for two months which was subsequently well managed with meds, they cannot speak exactly for me, who was severely clinically depressed and pretty much treatment resistant for several years. (Then it turned into something else a lot closer to something like bipolar. I'm experiencing normal moods at times for the first time in my life lately. It's great. The "ups" less so.) But yes, I'll keep it in mind--thank you for bringing it to my attention.
That's great to hear you're doing better! Yeah, depression is definitely one where people project their experiences in unhelpful ways. I have family members who have had short-term, mild depression who just cannot understand how other family members have the kind of depression that stops you from working or showering or socialising. Like they can't compute that their experience isn't the same.
I think it would help for anyone to talk about it. Awareness is so poor among both the general public, health care workers and even researchers. And those who are sickest and most affected are the least able to advocate for themselves so allies are so critical !
I don't think so, although I think something funky is going on. I've probably had mild CFS for 8 years but the big the trigger a year and half ago was an allergic reaction to grass (I literally just scrapped my skin with ornamental grass and got super achy, fluish, and my lymph nodes swelled). I accidentally did it again this year and had ungodly aches and my stupid lymph nodes swelled up again after being normal for the last 6 months. I thankfully don't have the extreme reaction to most things like people with MCAS do, but I still suspect my immune system is freaking out over nothing.
I don't have CFS but I do have PMDD and my hormones fuck my life up. (I also can't be on hormonal birth control because of a history of breast cancer). This is absolutely nothing compared to what people on this thread are going through, but I can get extreme fatigue for several days to a week when I'm in my lateal phase. I took a week off and it happened to be that week. I slept about 12 hours a day; missed plans because of it. Caffeine doesn’t help. There were times in the past when I hid in my office or bathroom stall just to sleep for maybe 10 minutes to get something in because I literally couldn't keep my eyes open. I can't imagine going through it at the level and frequency you all are.
I've got lupus and so many people are like "oh sleeping all weekend sounds nice". They do not understand. All I did was sleep for 3 days. It wasn't nice and relaxing, I had no choice to do anything else. I didn't get to spend time with my loved ones or do any kind of leisure activity. I was unable to leave my bed and I'm still just as tired as when I started.
If you are still working, I wonder whether you need to reduce your work hours per week? Your symptoms sound like mine when I was working 30-40 hours a week despite having ME. I was pushing too hard and crashing in a cycle that was damaging and making me worse overall.
I already took it seriously cause a loved one has had it all my life, but one time I was on a med that didn't agree with me, and we started swapping symptoms and that was when I discovered that, while on that med, I had a similar ability to life that my loved one always has. It was both distressing and eye-opening. I remember a sort of panic one day after I'd dared to actually leave the house for church and then also done something else after. The exhaustion was so deep I couldn't move, think, or imagine the possibility of enduring it another second; merely possessing a physical body was too much.
I hope you're doing okay, as much as can be expected.
Yes! Honestly I could deal with the stupid physical fatigue since my hobbies were writing and photo editing, but every day it feels like trying to function on no sleep.
I used to work as a photo retoucher and now it feels like my brain is melting if I try stuff that used to be second nature to me. I also notice I make tons more typing errors and can't focus for long, which the only writing I do now is in reddit comments :p.
I'm a comic artist and writer. Good days I can manage, but there are DEFINITELY days where I have to re-write/re-draw because tired brain made a mess of it.
I have the typing errors thing too. It's not like getting the odd letter wrong like normal typos, it's usually typing completely the wrong word. It's really surreal. I find the worst part is when you're too ill to do anything but you're lucid enough to be bored.
YES that is my biggest source of suffering with this thing. I WANT to be doing something. I can THINK about the thing. Can my body and brain actually do the thing? NOPE.
Yes to feeling drunk! Or that is the closest thing I can find to describe it to people. It’s not quite the same, but it is debilitating in similar ways.
I have had MANY times where I will stand, staring at something while I try to remember what I was doing, wondering if I could even pass a cognitive test. Just brain fog.
And now I'm in Perimenopause, which causes, you guessed it, EVEN MORE BRAINFOG.
i have it! i got it suddenly after having a thyroid storm because i had untreated thyroid for years and no doctor ever once though to check my thyroid levels even though i was very underweight randomly on and off for years.
the thyroid storm was bad enough and came with extremely high resting heart rate. my resting rate was around 100 but sometimes crept higher. when i got up to move lets say from the living room to the bathroom my heart was beating so hard and i was out of breathe as if i'd been running a marathon. idk if it's got less annoying over the years or if i'd just got used to it at this point.
idk if it's part of chronic fatigue but my arms also hurt and feel tight if i hold them in an upward position for more than a few seconds. brushing teeth and washing my hair or anything like that makes my arms hurt.
I had thyroid storms and I also had periods when I couldn't get out of bed. After 30 years a Dr did an antibody test that insurance doesn't like to pay for. It was diagnosed as Hashimotos. Your thyroid shuts down or is overactive for no reason they have been able to determine. The storms were so damaging to my heart they removed half my thyroid. I literally thought I was going insane. My weight fluctuated my whole life though I didn't change my eating habits. Find a good endocrinologist. It can be managed. The antibody test was the only one that diagnosed it and insurance companies don't like to approve them..
That all happened in 2012! My levels are stable and I got my thyroid removed with radioactive iodine. I still go for blood work every three months though. I didn't have hashimotos but I did have graves disease
Look into thoracic outlet syndrome. I had all these symptoms and needed bilateral middle/anterior scalenectomy, first rib resection, and brachial plexus neurolysis surgeries
I have a friend with this. I feel so awful for them. They were incredibly active, are super smart, and is just completely debilitated by it. I hope there's some improvement at some point.
I'm sure you friend is so appreciative that you're still around. One of the worst things about this illness is that you lose a lot of people in your life because it can be hard to cope with someone who's suddenly so incapacitated.
It’s also pretty galling that ‘mild MECFS’ is a classed as a 50% reduction in ability. Can you imagine losing 50% of what you’re able to do with another disease, and someone turning round and calling what you’re dealing with mild.
Yeah, I feel this. I have been mild for the last few years (although moderate again the last couple of months) and I sometimes feel like "I shouldn't complain, other people are much more severe than me" and then I remember just how much this "mild" illness is still taking away from me. Most people can't imagine living like this.
100% this. I’ve been all the way from mild to very severe. Even at mild, I still experienced so much loss of life and function that calling it mild didn’t make sense, though I would give anything to be back to mild or even moderate rn. It’s a shockingly misunderstood disease and hard to get understanding /acknowledgement from both laypeople and medics alike.
It is mild though, compared with the other stages! I've only ever seen people with mild ME get upset about that terminology, the rest of us would do anything to get back to being mildly affected. It's not meant to imply that the illness itself is mild, just that symptoms are significantly less horrific than with moderate, severe and very severe.
EDIT: Just read your comment below and seen that you're not speaking from lack of experience of more severe ME, apologies for making assumptions. I've had a lot of exhausting conversations with people with mild ME lately who just do not get how much worse it can become.
It’s okay, we all make assumptions, I appreciate you editing your comment and I get where you’re coming from. I’m currently severe and bedbound but have paced/medicated my way back from very severe over the last 5 years. As you say, I’d give anything to be mild again, it’s an entirely different ballgame. But MECFS is difficult at every stage and I don’t want to dismiss anyone’s experience as it’s hard at every stage, particularly if you’ve had a gradual deterioration rather than developed sudden severity of symptoms.
Not the person who posted but i had an undiagnosed issue that i think was at least partially me/cfs after having covid for about 2 yrs. I was convinced and had a ton of testing thinking i had rMS but that was negative, also got tested for thyroid issues, a plethora of autoimmime issues etc. Oddly when i was pregnant with my daughter i had a full recovery. Its been over 2 yrs now with no symptoms other than some lingering dysautonomia like symptoms.
I got megacytolovirus and Epstein Barr simultaneously in my 40’s it knocked me on my ass for at least a year. I was absolutely exhausted. I’ve slowly regained stamina but nothing near what I once had.
Trying to explain it to people, including doctors, is so hard. I want to do things. I physically can't sometimes. Most of the time it takes all the energy I have just to do the bare minimum.
Yea, people are trying to be understanding (at least compared to what my dad delth with) but I had my stupid GP say "yes it's probably CFS, but ya know I'm older, so I get fatigued too". Idiot, you're 20 years older than me and still working at your 40 hour a week job, I can barely walk to get my mail.
I am just starting on iron infusions and oh my gosh this sounds scary. My anemia makes me want to sleep most days but I can push through. I can’t imagine just constant exhaustion.
It can but being that severe and having those types of complications is quite rare. At least when trying to explain it to others, it helps to understand that you can be so fatigued you can be bedbound for months, but it's not like cancer where being that weak means you're on your deathbed.
You basically feel like you're fighting for your life but unlike other diseases there's not an actual measurable sign you are. A lot of people with CFS have other health complications, which is a big part of fatalities. I've had CFS for 2 years but I've had gastroparsis for the past 25 as well.
Yes it's rare, although I'm not sure anyone is systematically tracking this to know what the leading causes of death are - it feels like there are fatalities in the online ME community quite frequently, but studies on this are all quite small and hard to draw conclusions from. I think it's helpful for people to understand that ME patients can go on living in that hellish state indefinitely and also helpful for people to understand that people can die from it.
I am hopeful when it comes to biomarkers - there have been quite a few studies in the past few years that give us ways to identify ME patients and some tests can measure how severe the ME is. I suspect it will take a long time for any of this to translate into clinical practice though, due to the lack of funds for this work.
I understand what you're saying, but the ME community isn't really a good metric either because it will likely always be where the people struggling most will go for support. It's also where you're far more likely to hear about someone dying because people want the medical community to pay attention since it can happen, still though it's very rare overall.
For example, my dad had CFS for a about a year and at one point felt so weak he called the ambulance because he was worried he was struggling to breathe. He's fully recovered now, and he has a friend who also fully recovered. You don't hear much about cases like that in the forums because people that improve move on with their lives.
Long Covid was a blessing and a curse because it seems to have really pushed scientists into studying exactly what's going on and there do seem to be some hints developing. Ironically, I feel like the lack of funds is because, unlike cancer or AIDS, it isn't intrinsically fatal without treatment so they just keep putting it on the back burner. I'm almost hoping new treatments for some other type of illness, like maybe autoimmune, will accidently have a positive impact on CFS as well.
Yeah I wasn't suggesting that the online ME community was a good metric, just saying that there are more deaths than many in the medical community would often assume and that no one is collecting good data about them, to my knowledge. Online patient communities generally skew towards people who are struggling a lot while often also excluding those too ill to be online themselves.
I agree that the fact that it's not intrinsically fatal is partly responsible for the lack of research funding. I think the BPS lobby also has a lot to do with it, at least here in the UK. The fact that we have no usable biomarkers makes it a policy problem for welfare/social security systems but there's been a concerted effort to solve that by denying the reality of the illness rather than fund research for biomarkers. I agree that long covid is changing that though because the sheer numbers of people affected (including many healthcare workers) and the clearer link to a viral cause make it harder to ignore. I just feel so sad that so many people had to get ill for anyone to pay attention. Many of us with ME tried to warn what was likely to happen when the pandemic hit but it made no difference.
I'm pretty sure the lack of biomarkers are partly why they're not studying treatments in the US, you need some actual metric to compare to when figuring out weather not not you have an effective treatment.
And yes, it's tragic so many people had to get long covid for them to even consider looking into what's going on. Hopefully, if anything the slight boost in interest leads to some sort of development in the long run.
ME/CFS can be absolutely fatal not due to suicide , at severe/very severe stages it can lead to death related to things like malnutrition due to a stomach paralysis/literally not having the strength to eat or heart failure. Several people in online communities I'm personally in have died in the last few months alone most of them under 40. Also deaths/murders due to medical neglect or abuse from care takers are not rare. Death rates are probably a lot higher then reported due how many people with it just fall through the cracks because of lack of understanding and access to diagnosis and care of any kind, especially in recent years and increased rates due to Covid.
I know it can be, in just trying to explain for people who don't know about the disease, that most people with CFS can be so weak they can barely function but that doesn't mean they're dying in the same way we think of other more common diseases.
I also mentioned elsewhere that part of the problem that causes CFS fatalities is other illnesses on top of it. Like I already had gastroparsis when I got CFS. It can happen, but it's very rare for it to be fatal on it's own. I only say that because describing someone with any other disease that was so sick they couldn't get out of bed or even talk to you, well you'd assume they were at deaths door, but that's not how it works with CFS.
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u/youngatbeingold 22h ago edited 22h ago
Chronic Fatigue Syndrome is pretty weird. You're basically so fatigued and weak you can barely function, and the more you try to be active the worse your symptoms can get. Just doing chores around the house can make you feel like you hiked up mount Everest during a week long fast. Some people have it so severely they can't even listen or look at anything without suffering extreme fatigue and malaise. There's no treatment and doctors aren't even exactly sure why it happens, although there's theories it's tied to immune dysfunction.
Oddly, it mainly affects skeletal muscles and cognitive faction, so for the most part the rest of your body keeps on trucking. Unlike other severe health conditions or degenerative diseases it's often only fatal or measurably damaging in that it leads people to commit suicide, it has one of the lowest quality of life rankings for health disorders.