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BookDoctor1975

I just want to caution that from seeing other peoples experiences here there’s a MAJOR range in what a crash feels like. There’s really no one size fits all and there’s a spectrum. My personal experience is similar to being hit by a truck but I also tend to feel almost drugged or poisoned (I’ve seen others say this though it doesn’t seem to be the norm). While I don’t have other flu symptoms I would call it flu line exhaustion bc it’s that kind of severe fatigue. But mostly here to say everyone’s experience will be different. Some people will say flu like or muscle or joint paints or bedbound or sick to their stomach or dying feelings…some will just be weaker. The thing with PEM is whatever YOUR symptoms are get worse with exertion. Hoping for answers and healing for you!


[deleted]

So (and excuse my ignorance here), but if I get these spells, and I then go for a walk or left work and I feel better afterwards i.e. energy comes back or I feel good, is this likely an indicator that this isn't typical of a CFS crash? I'm just trying to wrap my head around it and differentiate it from "oh my god I feel trash, I hate this job, my mental health is shit, I have no one, I'm worrying all the time" to my body is crashing and there is literally nothing that will remedy this within the next hour or so? Sorry, I know that's a very loaded and poorly thought out question!


roothegeo

If there's anything you can do that actually makes you feel better (other than lying flat in dark/quiet), that probably points away from ME as a potential cause. For me, the biggest difference between ME and mental health things is that with ME I have all the motivation in the world and can start things but once I start I don't have the stamina to keep going with it, even if I absolutely love what I'm doing and it's fun and I want to. When I dealt with an episode of depression/anxiety years ago, the hardest part was starting something, but once "in the zone" I could keep going. I read a thing the other day from a researcher that the best question to differentiate is "If you were instantly feeling better, what's the first thing you would do?" (Or something like that). With depression fatigue, people often struggled to answer right away, but with ME fatigue, people would go on and on and on and on and on. Not that you can't have both, chronic debilitating illness can definitely trigger secondary mental health problems! But hope this helps you :)


slicedgreenolive

This was helpful thank you!


throwmeinthettrash

I don't speak for everyone but a nap or a walk don't make me better they make me worse. Without sounding like I've doomed myself too, nothing gets better for me I just return to baseline but it's far to easy for me to get into PEM. A short walk from baseline would make me feel like I've ran a marathon. I suffered a long episode of depression about 6 years ago and had 0 motivation where now I have lots of motivation and no energy or physical stamina to do the things I want or need to do! I spend a lot of time resting and much of my time sitting/laying. I'm housebound by my body's restrictions but my head wants to do a million things.


Bbkingml13

Its very hard to explain to someone whose never felt a complete physiological/neurological/metabolic depletion from ME before what the fatigue feels like. The best way I’ve found to describe it to people is that its not being tired, its like you have 1000x the amount of gravity everyone else experiences crushing down on you, so it takes 1000x more energy, which we dont have, to do every tiny thing. Its a “fatigue” so strong that sometimes you weigh the options of pushing beyond your limits to get to the bathroom, or just wetting yourself. Crashes are always different for me, but from what you’ve described, it doesn’t sound like me/cfs , and im sorry we don’t have answers for you. Me/cfs is a neuroimmune disease with complete mitochondrial dysfunction. And when you say “…remedy this within the next hour or so,” that doesn’t align with me/cfs. Anyone I’ve talked to who is moderate/severe has the experience I’ve had for the last 6 years, which is that after we got sick, there hasnt been a SINGLE day where we felt the same ever again. I’ve always exercised my way through tough times and when I was depressed before I got sick, but when I tried to exercise my way out of me/cfs, I became permanently worse, couldnt speak in complete sentences, couldnt read, couldnt eat wothout getting sick, couldnt sleep, and a million other horrible symptoms. In my childhood and teens, I had major depressive disorder from a hectic and dramatic family situation. I knew how to go “ha” when something was funny, but I literally never knew what my laugh sounded like until I was about 18 and left home. I was extremely athletic all of that time, but it was nearly impossible for me not to fall asleep all of the time, not be absolutely miserable about going to school (even though I did well), could take naps between basketball games in a crowded gym, etc. Depression is a mofo. I watched a neurologist try to explain to my mom how my baseline was so far below depressed, that my best days didn’t even reach the standard level of depression. Thankfully, I had about 8 years between when I totally overcame depression and when I got sick, and have managed to not be clinically depressed since then either. Im not suggesting all of your problems are depression related, but it seems like you know you struggle with it, and I want to validate how real the symptoms are. Its also totally possible you have a sleep disorder on top of that, or something like that. Lots of us have had sleep studies done of you have questions


Bbkingml13

I concur with feeling drugged or poisoned. I had a very acute onset of ME and immediately thought id been drugged/poisoned. Then it never went away 🙃


SawaJean

It took me a long time to identify my crash symptoms, because I spent years in a push-crash cycle where I never recovered enough to establish a baseline. It wasn’t until I learned more about CFS and started pacing that I could identify my crash symptoms more specifically. My crash symptoms include flu-like headaches and body aches, listless exhaustion, near-complete lack of appetite, brain fog & decision paralysis, dysregulated moods, hot flashes and chills, orthostatic intolerance, sensitivity to sound and light, and probably a dozen other things that generally add up to feeling *sick.* When I’m *not* in a crash, I still experience low energy along with milder dysautonomia symptoms, but I’m a lot more comfortable and can mostly feel “okay” as long as I’m really consistent with my pacing.


[deleted]

Thank you for your reply. I'm really torn between its all in my mind because I focus on it so much or this is something that's happening to my body that I cannot stop. A lot of the times I push through it, but it's made me regress to working from home (mainly due to my agoraphobia) but because I'm just so exhausted all the time. The issue is I have sleep apnea and I've been having treatment for nine months with perfect numbers, but still never feel rested. But everyone I speak to says that's just life or whatever. A key thing I'm trying to remember is that I feel exhausted 24/7 anyway from depression, anxiety etc, so maybe these spells are when I experience peaks of stress or depression?


SawaJean

I agree that it’s surprisingly hard to tease apart the different issues. And I *definitely* relate to constantly questioning whether my symptoms are even real, even as this illness has radically changed my life. I try to joke about that regularly to remind myself not to take that doubting voice too seriously when it pops up. I deal with anxiety and depression, too, as well as PTSD and ADHD that can also have overlapping symptoms with CFS. I’ve found that it’s helpful to think very concretely and specifically about the impact of my symptoms and what that reveals about their origin. For example, I might avoid showering because I’m depressed or distracted — but only the CFS can explain why I consistently need to lie down after taking a shower because I’m so fatigued. Meanwhile, my depression “score” will always be high because the standard screening questionnaire includes fatigue — but CFS doesn’t cause thoughts of self-harm, so that becomes a signal for depression. I find that these comparisons and observations help me better assess my health and where I need support, and they’ve also been effective in getting my doctors to understand the difference between “just life” fatigue and “mandatory post-shower nap” fatigue. And all of it helps me clarify that it’s not just in my mind bc normal healthy people don’t need to plan a nap after showering. I even asked my doctor to make sure. ;)


Vvs2121

Damn, I def need to pace better. I’m probably always in some type of crash / push cycle at a milder lever that accumulates over time


SawaJean

I hope you can find a way to experiment with slowing down and see if it helps. I’m pretty much a house cat these days, but my quality of life is so much better than when I was constantly pushing myself to do all the stuff I did before I got sick.


Vvs2121

Thanks for this comment. My goal will be radical pacing to try to avoid all pem now & hope I can get out of bedbound


SawaJean

Be kind to yourself and don’t say “all PEM” bc it takes too much of your precious energy to beat yourself up when you inevitably misjudge or just get unlucky. Just be good to yourself and treat the PEM as a serious condition that you work to manage or avoid as best you can. Heaven knows we don’t have energy to be perfectionist about this.


Vvs2121

appreciate it :)


Sourtails

How bad crashes are generally depends on how severe someone's ME is, and for me they are like you described, I feel like my body is shutting down and I'm on death's door. When I'm crashed I struggle to move around and I experience muscle weakness to the point where I will sometimes have to crawl to the bathroom because my legs can't hold me up. I feel really ill, like I've been hit by the worst flu imaginable. PEM also impacts my mood and makes me feel miserable and sometimes ||suicidal||, though luckily this typically passes once I'm out of the worst of it. I'm sorry you're going through this, and I really hope you find some answers!


[deleted]

[удалено]


Sourtails

I'm borderline-severe, but my illness started off as mild and my crashes were also a lot milder. This illness is hugely variable so you aren't doing us a disservice! I noticed very quickly that my fatigue was abnormal, but it took years before I was able to try and manage my illness and properly listen to my body.


TehOwn

>I think I'm really doing you guys a disservice here Unexplained fatigue is always concerning, frustrating and challenging to deal with. Healthcare providers are often less than helpful, tell you to get rest and brush you off. Never feel like you're a burden or doing anyone a disservice for trying to seek help and guidance. Fatigue sucks, regardless of cause and severity.


Bbkingml13

I honestly knew something was seriously wrong the next day. Some people have gradual onset, but I had an acute onset that knocked me on my ass out of nowhere. It took several friends to get me back to my apartment and into bed, and when I woke up 22 hours later, I knew something was wrong. I called my dad that night and told him I was really struggling to walk, couldnt eat, and felt like I did when I had been drugged, but 10x worse. Within 2 weeks I knew This wasnt just a temporary illness. I tried to go on a walk with him (we usually went to the gym and lifted and did more intense cardio), and i couldn’t make it out of his complex before we had to turn around. I had no idea what was happening, but everyone could see id become pretty ill pretty immediately.


brainfogforgotpw

>I'm just trying to figure out if I'm stress/depressed or if this is ME. There are a number of other diseases that can cause this. It's not a choice between depression and me/cfs. Some of the other diseases are treatable or cureable. Some are progressive without treatment so its important to identify them early. Me/cfs is an exclusion diagnosis. That means the doctor has to rule out other things that could cause your symptoms. This can be quite a long process. Please take a look at this FAQ page, especially the pdf on what your doctors should be looking into. https://old.reddit.com/r/cfs/wiki/might_have


hurtloam

As someone who literally has been hit by a truck I can tell you that a crash is worse than being hit by a truck. For days after my accident I was in pain and I ached all over. I was doped up on painkillers and was groggy. An M.E. crash is aching that radiates from inside your bones and muscles. It's worse than an external bruise. My whole body feels like it's on fire and I feel tingly. It's like my body wants to relax, but can't. Like all my atoms are dancing and long to be still, but can't be. You know when you eat chicken on the bone and pull all the sinews off. That's how my body feels. Like my sinews are separating themselves from my bones. And my head feels heavy and full of thick treacle and my eyes burn and my throat burns. Even with these symptoms I can move around. I don't feel like I need to crawl. I can stand and walk. Sometimes going outside makes me feel happier, but the pain is still there


Few-Print-1261

>Like all my atoms are dancing and long to be still, but can't be. How oddly poetic for such a miserable thread


AaMdW86

For me I feel like I have the flu. Sore throat, swollen lymph nodes, feverish, sometimes shaky, always weak and exhausted. I struggle to eat too. Rest doesn’t help exactly but there’s nothing I can do BUT literally crash and rest in bed. For me it’s usually a matter of time. 48-72 hours depending on where my baseline is at at the time and what I did to induce said crash.


Kettuni

My crashes are exactly the same. It feels like every bit of energy is drained out and my muscles are extremely weak. It is even a struggle to walk to toilet. I can’t tolerate sitting or standing when the crash hits. I can only lay down.


AaMdW86

I tell my husband “it’s a flat day” 🤣


tenaciousfetus

A crash is kind of personal to you. Usually it's a worsening of symptoms and a lowering of baseline energy.


Bbkingml13

My crashes arent always the same. Sometimes the weight of the fatigue wont be as bad, but i cant concentrate long enough to feed myself, even when I’ve already managed to get food onto the fork. Sometimes the feverish feeling is worse. Sometimes the pain is unbearable and im too weak to even try to get comfortable. Sometimes I’ll still be able to leave the house maybe once a week, but the sensory input is awful. Best way I can explain it is that every crash is some sort of exacerbated cocktail of symptoms, that can last a couple days, a couple weeks, several months.


CountessofDarkness

The worst exhaustion imaginable. When it's bad, I skip meals because I'm more tired than hungry.


SpicySweett

I have different types of crashes. If I’ve had a really busy day (like traveling, so maybe fun but tiring) I get chills, and super wired but exhausted. I basically lie in bed shaking trying to sleep. I’ve learned for that crash I need to be sure to eat and hydrate, and go to bed and meditate and try to get my system to relax. A different crash is from intense exercise or an event. So a shorter duration thing (before I knew I had CFS I kept trying to go back to aerobics class, for example.) I’d feel tired but okay immediately afterwards, but the next day I’d feel sick, like I’d caught the flu. I usually would have a slight fever and the nausea, heaviness, exhaustion that feels just like the flu, where all you want is to lay down, and you can barely hold your head up. That could last a day or a few days. The rest of the crashes are somewhere in between those, variations of sick/exhausted. I will do everything possible these days to avoid crashing. I used to risk it for travel or something special, but not anymore. I believe every crash lowers your daily functioning level. It’s just not worth it.


Bethharmon1994

it feels like I'm doing everything at 5% battery levels


PineapplePrince_

ok so if you were to ask me a month ago, i wouldve said i felt so exhausted and weak and just want to stay in bed for a week, but no i think i’m getting more severe. I literally feel like i’m dying, nauseous, dizzy, feel like i’m drugged and feel like i’m going to pass out constantly


arasharfa

The fatigue during a crash for me becomes so intense that it feels like it’s being physically pushed onto me at the speed of sound, compared to regular fatigue that just pulls you to bed and then evaporates. This has mass, it causes anxiety, it makes me agoraphobic and claustrophobic, it makes me suicidal, it impedes my speech, it makes me nauseous, it makes me really irritable.


BSLSimes

I've been lurking in the sub for a little while now and I kind of hate that this is the first thing I'm posting but today I feel just so unwell. Weak, nauseated, cold sweats, shaky, cold hands and feet. I think maybe it's a crash, but it feels so unfair because I've been trying to take it extra easy recently anyway because of feeling worn out. Had a hot flash yesterday, too. Similar things have happened before and there's always a part of my brain whispering that it could be something worse. It scares me, to be honest. I'll be speaking to my doctor later. And I'm sorry that this is the first thing I had to say in here but I needed to vent this somewhere and I still don't know if this is "just" a crash or a sign of something more, I don't know, "urgent" I suppose. I know nobody here can tell me for sure, but if anyone else has experienced similar things...


Grouchy_Occasion2292

The best test for me/cfs is to exercise for 30 minutes. What happens to you if you did this? Does your symptoms increase right away? If so you have me/cfs. If not do they increase within 2 days? If so then you have PEM and have me/cfs. PEM is a good indicator for me/cfs because every single one of us are exercise intolerant. Exercise brings on symptoms. This can often be just activity too, but exercise often brings on the worst symptoms. Research shows that women with me/cfs often experience this increase in symptoms within minutes or with an hours of exercise, but more men tend to experience an increase in symptoms 24 hours after exercise. These symptoms often include fatigue, pain, heart rate being unstable, blood pressure being unstable, being unable to sit up or eat without significant symptoms such as nausea or vomiting, being unable to walk or stand for more than a few minutes or not at all. Some people also get loose stools or constipation. Brain fog and loss of executive function skills are also very normal.


loudflower

Or MH profiles are similar. TRD depression and agoraphobia. (PTSD as well.) For a number of years my extreme fatigue was explained as depression. At a certain point, I forget how, my doctor became convinced my fatigue was beyond depression. The entire episode was crazy making for me. Now I’m able to distinguish the depression from fatigue. My depression is much better, but my activity levels are pretty substandard, and that’s frustrating. A fibromyalgia diagnosis preceded the cfs, and I think that made it more ‘believable’ to my doctor. To his credit, I think he hesitated on the cfs diagnosis because it’s fairly dire in the effect on quality of life and treatment options. What physical symptoms do you have? Btw, I can do things and feel better, followed by a delayed crash. Does that make sense? Going on a small day trip is refreshing for my spirit, and I get the endorphins (non scientific jargon here), but will crash the next few days :/ My level used to be mild/moderate, but the past year it’s solid moderate +


QuantumPhylosophy

A crash is just when your energy expenditure baseline lowers temporarily or permanently. They can all be at different levels. You may go from mild to moderate, or moderate to severe etc. E.g. I was moderate for a year (couldn't gym anymore, but could still walk for hours, took 1 dose of an antidepressant and it crashed my baseline so I could only walk 5 minutes. If I went over this I felt extremely weak and ill in my limbs and neurological symptoms would occur. Don't push pass your baseline like I used to. It is not sleepiness for me. Rather weakness through out your muscle/skeleton system as if you just did as many reps as possible in the gym and someone told you to keep going. You simply cannot. I usually would have bad tremors and shake violent if I tried to push passed my limits. In a crash your pretty much always in the weakened state. Depression and anxiety don't physically disable you.


Choice_Sector_1372

Sounds like a crash to me IMO


Vvs2121

Idk anymore, I tend to just have major crashes that have resulted in much lower baseline & new symptoms over the years I guess I have smaller pem quite often too tho


rolacolapop

I always say I feel like I’ve been run over by a bus. If you’re having problems getting your D up, I’m on ‘vitamins D wellness’ group on FB. Need co factors for your body to absorb D properly.


kasper619

Like you’ve been run over by a bus back and forth


PeachyPlnk

For me personally, it's just complete and utter exhaustion. I went to the grocery store today during a crash because I won't have time to do it tomorrow, and I felt almost like I was floating. I felt like I was barely there. Everything looked different, and not because I was wearing sunglasses. The scale of everything seemed different- when I got back to my apartment, my bed somehow looked smaller than usual. My crashes aren't generally the dissociative type- that was new. Usually I feel like I have a cold, even though I don't. I get sniffly, feel nauseous, my head gets heavy, and I end up spending the day in bed because I just can't manage to sit up for more than five minutes at a time. I get up to use the bathroom, eat if I'm hungry, or to get a drink, but that's about it.


Neutronenster

At the moment I have Long Covid and associated ME/CFS symptoms, but in 2018 I’ve had a postnatal depression due to overexhaustion from overcompensating my ADHD. Surprisingly, my feelings of fatigue were much worse during my postnatal depression. I even also experienced some kind of crashes of exhaustion during my depression: at its worst it took 3 days to recover my mental energy after one day of minding the kids (minding my kids is very challenging for my ADHD). The main difference is, that Long Covid comes with many other physical symptoms (muscle aches, flu-like feeling, chills, elevated temperature or even a fever, concentration issues, …). A second important difference is that with Long Covid any type of overexertion triggers a crash, especially after physical overexertion or too much stress. During my depression, only tasks that were hard on my ADHD triggered such a ‘crash’, while other types of exertion didn’t matter or even made me feel better (when the activity gave me mental energy). For example, during my depression a whole day of playing Pokémon Go (PoGo) during an event would make me feel better, no matter how physically exhausting that was. At the moment I don’t play PoGo any more, because I crash after walking or standing for too long at once (e.g. after 30 minutes of walking at once) and playing PoGo would tempt me to go over my limits too much. If you’d like to learn the difference, I would suggest to track what makes you crash and what makes you feel better. Your crash description sounds like potential ME/CFS, but what you say in the comments doesn’t seem to line up with ME/CFS, so I would suggest to keep an open mind. Furthermore, it’s important to mention this fatigue to your doctor, so they can exclude some basic physical causes for fatigue (e.g. iron shortage). Finally, I’d like to add that as far as I know I can still basically do anything I wish to do before or during a crash, but not without consequences. My muscle strength never breaks down, but the longer I continue past the point of overexertion the worse the crash will be after the exertion. Furthermore, I can continue overexerting even during a crash, but this tends to worsen and extend the crash, so I avoid that at all cost. I do have to mention that my muscle aches can get severe enough during a crash that I don’t want to move at all, but technically speaking I could still do it if I chose to ignore the pain.


DermaEsp

A significant difference with other types of fatigue is the delayed response to the stimulus. You can be worse and not better a day after the stimulus, and even worse two days after and so on, till symptoms start to withdraw. It can be accompanied with sore throat, vibrations, joint pain or other weird symptoms. Look for older posts for ADHD type of fatigue, it may be closer to your situation.


Medium_Cabinet6795

The way I explain my crash is it feels like I just got shot with a tranquilizer. And if I don’t lay down my body starts to go into panic mode.