What does "tired but wired" mean to you, when does it happen and what do you do to feel better?

R

rapidboson

Senior Member (Voting Rights)
Hey!
I'm interested in hearing your experiences with "tired but wired". I'm wondering if everybody is talking about the same (or similar) experience.

How does it feel to you?
When does it happen?
Is there anything you can do/take to help in your situation?
Do we know the pathophysiology behind this symptom?


For me it feels like I'm super tired in/behind the eyes (if that makes any sense?) but my body and mind is very awake but in somewhat of a trance state. It almost feels as if my eyes were too dry and strained. Brain fog is very strong during those moments.
I've read about it often in connection to insomnia, however I don't feel this at night. It definitely might cause insomnia when wanting to take a nap during daytime.
I pretty much have it constantly.

[tangent] It does not feel like what I would call an adrenaline surge. In my definition of such a surge, I get hot and cold instantly and my heart rate goes up - say when I'm on a train and I forgot to sign in with my ticket and I see somebody going around and checking tickets. Or I'm about to do a bungee jump.
I don't think I've felt this feeling "out of nowhere" from ME or any other illness. Hence, I'm not sure if this is what people call adrenaline surges. (I'm also not native English.) [/tangent]

The only thing that's every helped me with tired-wired was propranolol. Unfortunately, it's messed with my COVID induced asthmatic lungs, so I had to stop taking it. Nebivolol (also crosses BBB) does not affect it, which makes me think it's something related to the beta 2 receptors?
Nothing else, be it behavioral or pharmaceutical has helped me.

Interested in your anecdotes.
 
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The simultaneous experience of exhaustion and difficulty entering into a restful relaxed state. I suspect the wired state is sympathetic arousal that occurs when we try to push past healthy and sustainable limits, and allows us to keep going when necessary.

Working on a better balance between rest and activity, and managing orthostatic intolerance seems to be helpful.

The body needs to experience both activity and rest during the day, and be good at shifting between these states.
 
For me tired but wired refers specifically to when I'm trying to get to sleep at night and am very tired and needing sleep but my brain is wide awake and buzzing with thought, and my body feels restless. It is often a sign I've been overdoing things and am heading into a crash.
 
Physically and mentally exhausted. But my body and mind are somehow not restful (I’m cautious to say not relaxed but that could describe it too, or maybe alert, primed) while awake or asleep, with sleep being difficult or broken/lower quality.

Exhausted and restless may be another useful phrase pairing.

There may be tension in the body, some things which could be described as pain, usually heaviness and weakness, but exhaustion is the big thing.

I may not be buzzing with thought, it’s not like when I’ve had depression/anxiety and had things running through my head (although this can happen if stressed, it’s not an essential component of this phenomena for me), but my mind can be sort of mindlessly drifting, and quite calm, just not going properly off to sleep. Or if awake tracking thoughts can be difficult.
 
For me, it's when I'm utterly exhausted but my body and mind are buzzing, tingling, restless, can't settle. It's not necessarily just about when am trying to sleep, just any time I need to rest and my body has other ideas. I've heard some describe it like being in a car with your foot on the accelerator but not in gear, just revving the nuts off the thing.
 
For me it’s a part of PEM.

After I overexert, it feels like my body sends some signals (perhaps adrenaline or something) to compensate. I feel jittery, energetic, wide awake, my symptoms also flare. Trying to sleep without benzos is a nightmare. My sleep time is way lower. My heart rate spikes. I often get diarrhoea. I feel like I’m overheating.

This feeling can last a long time, but it will go away if I force myself to stop doing activities. This feeling can last months or years on end if you’re in a state of constant overexertion. Once it finally subsides, it is followed by a decline in function, which is what I see as the main part of a crash.

I just call it “wired”. I guess I’m “tired” too, but that’s not what defines and differenciates the feeling, and it’s quite minor compared to the adrenaliney feeling, the “tired” (or more accurately bricks dragging down on my body) comes more strongly after the wired feeling subsides.

At the beginning of my illness I often mistaked it for anxiety attacks or panic attacks. I know a lot of people who mistaked it for that too.
 
I'm very tired, I know I've overdone it, but I can't stop.

My brain won't stop, but my body won't either. I know I need to rest, but I keep seeing small jobs that are high on my priority list and doing them. They're not high priority—it'll be things like getting up from the sofa to put a sweatshirt I abandoned on the back of a chair two months ago into the wash basket—but this bizarrely persistent mindset is a key part of the "wired but tired" thing.

I get into bed exhausted, barely able to keep my eyes open and having had little cognitive function for hours. But the moment I'm horizontal (the shift's always positional) my brain explodes into life.

There's no question of sleep, but no question of stillness either. I toss, turn and fidget, and often have to get up again in the hope that engaging my brain in something that will calm it down. if I've breached my PEM threshold by a long way, it won't.

The strangest thing is how little impact the absence of sleep has the next day. My cognitive function is better than usual, and physically I don't feel nearly as bad as I ought to. I assume it's because whatever process kept me up all night is still running.

When I was still working, there were a handful of occasions where I had no sleep for four consecutive nights due to this. It followed a long accumulation of low-level PEM, which suddenly fractured the dam. The first couple of days I'd be really on the ball and you'd never suspect I hadn't slept. By the fourth day I'd be getting cognitive blanks where it felt like the videotape had skipped.


ETA: @Yann04's post has reminded me that when I'm awake overnight, I cycle rapidly between too hot and so cold I'm shivering. Another one of the treats!
 
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To me it feels like something is missing and another system has had to step in and take over but that system can’t let you relax in any way. Cruelly it gets worse the more over tired I get and I feel there’s something instrnsically different in people who have this presentation vs the people who doze as a response to tiredness. I read that the body needs energy to go into a state of relaxation and my experience is the sicker I’ve become and the less energy I have, the more on edge and the less relaxation is actually possible which could be part of the vicious cycle of m.e . on many days my oura ring will show me as having 0 restorative time during the day even if I've just been laying there having television on even if I've had my eye shut et cetera. When I raised this with my GP he brought up the fact that there was no evidence based medicine around this . They don't see this as anything they have anything to do with and yet your body is stuck in this dysfunctional state. Zopiclone helps me.
 
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I feel like my original explanation downplayed it or only explained the ‘lighter’ forms of it. Because reading others descriptions I also agree with a lot said.

Zopiclone, there’s an interesting one that I’d had when younger and suffering from mental health issues and staying awake for days and it worked brilliantly. Better than diazepam, temazepam or anything. No side effects. Tried it a couple of years ago for my first covid vaccine triggered crash and it was a disaster, it would get me off briefly but would wear off very quickly and I’d have a massive sort of rebound effect so I’d wake up worse, more wired and I got stuck in a bit of a cycle with it and poor advice from a Doctor…
 
I’ve read everyone’s descriptions and have thought about my own experiences but I can’t really identify if I do or don’t experience this?? it’s so common me lots of conditions but I can’t tell. I mean, i can’t think of any of my own experiences of it but it also seems strange that I wouldn’t. I’ll keep an eye out.
 
rapidboson said:
Hey!
I'm interested in hearing your experiences with "tired but wired". I'm wondering if everybody is talking about the same (or similar) experience.
Click to expand...
Reading through the replies I think, sadly, not everyone is referring to the same experience. I feel like a bit of an outlier in that for years this was what I considered my "PEM". It was post exertional (some other stresses can also trigger it, particularly heat related). It is slightly delayed, although always apparent the same day.

Perhaps the description above that comes closest to how I would describe this symptom is from @Yann04, but it has never been an ongoing thing for me thankfully, I don't think I could endure that. Always triggered by something, possibly leading to more PEM (as of S4ME definition) down the line but not an absolute certainty.

The no sleep without Benzos is a clincher, but it's not just a general feeling of insomnia with racing thoughts. It's a very physical and unpleasant feeling, perhaps as if there is drastic neurological or hormonal overactivity. I haven't ever personally mistaken it for a panic attack and I had never experienced anything remotely similar prior to ME/CFS. I now think that only a subset of pwME experience my version of this. I fear this means it will be overlooked in research.
 
This nowadays only happens when I am in PEM but I was in rolling PEM for many months while very severe and it was constant. I am mentally and physically exhausted and desperate to sleep but it feels like my body is pumping adrenaline and keeping me awake. I am wired like I am in an urgent danger situation. I recognise the adrenaline dump sensation but its lower levels but it feels identical the heightened awareness to the environment and the muscle sensations.
 
Hoopoe said:
The simultaneous experience of exhaustion and difficulty entering into a restful relaxed state.
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@Hoopoe 's seems the closest experience to mine, but I'm not completely sure it's the same thing.

When I've said I have trouble getting to sleep + exhausted & feeling awful, several people have suggested that I'm "tired but wired". I really don't like the phrase as I don't feel it represents my experience. But there's a v. limited vocabulary to describe the unique tortures of this illness.

"wired" to me suggests a jittery, buzzing, feeling-on-edge sensation & I don't experience that. My mind can be perfectly calm but I feel horrendous, ill-exhausted (not a normal healthy tiredness) but whatever switch in my brain needs to click to let me go to sleep is not able to click. It's a horrible state to be in and was much worse & intolerable in the first years.
 
Trish said:
For me tired but wired refers specifically to when I'm trying to get to sleep at night and am very tired and needing sleep but my brain is wide awake and buzzing with thought, and my body feels restless. It is often a sign I've been overdoing things and am heading into a crash.
Click to expand...
I had a thought about this. Probably nonsense but here goes.

I'm a stone age woman and I'm out far from my tribe's cave collecting roots. I am overcome by exhaustion and beginning to feel like I've got some sort of illness coming on, I start to feel on edge and have an urgent feeling that I need to get back to the cave before I collapse. My body provides a surge of adrenaline, just as it would if I needed to run from a wild boar, but there's nothing external threatening me and I'm not frightened. The adrenaline is there in this case to give me a surge of energy to enable me to get back to the cave before I collapse.

Now I time travel back to the 21st century. I'm already in my cave (bed) when my body senses imminent collapse. I have a surge of adrenaline, but it has nowhere to go physically, my body feels restless but I don't need to stagger back a mile to my cave. So instead the adrenaline wakes up my brain and senses and gives me a massive overload of racing thoughts and inability to sleep for hours. The imminent collapse my body/brain sensed was coming arrives sometime during that wakeful night in the form of a bout of PEM and the next day I can't leave my cave even if I want to.
 
Trish said:
My body provides a surge of adrenaline...

The adrenaline is there in this case to give me a surge of energy to enable me to get back to the cave before I collapse.

I have a surge of adrenaline, but it has nowhere to go physically, my body feels restless but I don't need to stagger back a mile to my cave. So instead the adrenaline wakes up my brain and senses and gives me a massive overload of racing thoughts and inability to sleep for hours.
Click to expand...

Interesting to hear this. I have something similar. In the previous post that sensation of ill-exhaustion/unable to sleep (which sounds like a bland description of something that is v. unpleasant) is definitely a sign of having "overdone" it / heading for or already in PEM. But the adrenaline surge probably preceded it earlier in the day, especially triggered by orthostatic demands or too much cognitive exertion.

My body or mind doesn't feel restless though with the surge (maybe it should? maybe my 'surge' is not working right?!), but I notice my body is in a heightened state even though it doesn't feel restless, so I'm guessing that's from adrenaline (maybe not?) and from experience, even though I can't sense it unless I get a pulse oximeter, I know my heart will be beating a lot faster but not strongly (hence I rarely feel the fast heartbeats).


for me these feel like related states but they feel distinctive. The adrenaline surge goes away after I start resting (not in the first years though) but maybe it does some damage that surfaces later in the other state.
 
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