I have noticed that adrenaline or some other stress hormone (possibly cortisol) dramatically improves my fatigue and many symptoms temporarily. To give an example, let's say I get a sudden attack of fatigue or sleepiness, if I don't do anything I would be in bed after a few minutes. However, if instead I force myself (which is pretty hard) to go outside for a walk then the urge to lay down disappears eventually. I also get similar effects from other activities that are not even physical, let's say meeting a new person or having an important call, i.e. things that would stimulate the fight / flight response. This leads me to believe stress hormones are involved. Unfortunately, this temporary increase in energy does not feel like a cure, but more like being in a more functional state. After all if the fight or flight response could temporarily make CFS disappear then we would see normal results on CPET tests and we know that is not the case. Nonetheless, the increase in energy just from eliciting a fight / flight response seems quite dramatic. Now, obviously, stress hormones are meant to do that, i.e. make you alert and suppress fatigue, so no wonder they have that effect, even to a person with ME/CFS. However, I am wondering, could there be something more to it? More specifically, is this increase in energy simply because these hormones somehow increase energy output regardless of the underlying energy issues (i.e. CFS) or could it be that the hormones are directly affecting one or more of the failure points that lead to CFS? For example, tying this in with the microclot theory, maybe these stress hormones somehow increase blood flow to the micro-capillaries in the brain or muscles? This would then explain the temporary increase in energy. Any thoughts?
But doesn’t it always signal payback to come? I get brief bursts of energy from online meetings and calls, and the buzz from those sometimes sustains me over a busy workday, but I’ve come to realise that will always mandate a day soon in bed feeling wretched. A relative who had ME in her 20s described it as “oh, shit - I feel really good”, because that adrenaline fuelled wellbing always means future PEM.
Yes, indeed being in such a state could trigger PEM if one is not careful, that's for sure. What I am interested in however, is how stress hormones could improve our condition that dramatically and quickly.
It might be an individual thing. If I force myself out for a walk I don 't get a blast of energy from the walk. A Zoom call usually wipes me out. I can get what I think of as a 'excitement' after stress or a shock. The 'adrenaline / cortisol excitement' thing (as I remember it) doesn't last long for me and doesn't make my physically able to do things usually. If I do (and it is unusual so .I remember) the crash is horrendous. I know my cortisol is low during the day and cortisol response output is blunted ( not enough for Addison's) so it could be that yours isn't blunted and it is enough to lift you out if the low time for a while? For me exertion at the time of the day when my cortisol is highest is easier with less post exertional payback. There may be a link. In my case trying to provoke higher cortisol with a walk or shock doesn't work as it us just exertion and I crash. Just thinking out loud here.
Do they improve our condition or rather mask it? When I was still working, but only part time, I could use stimulants (caffeine and sugar), pain killers, IBS medication and migraine tablets to get me through my three day working week, but knew this was only a delaying mechanism and after a few days all the suppressed symptoms would return with a vengeance.
Well that goes back to my original question. Maybe indeed they just mask it, but maybe they affect one or more things that are wrong with us in a positive way, albeit temporarily. Like you said maybe your hormonal response to stress is blunted, hence why you don't experience the same benefits. I am aware that what I am experiencing is not universal to everyone with ME, but I think it is quite common.
I know what you mean but have some doubts that this has much to do with adrenaline. To me it feels like the body is in a sort of "energy saving and chronic illness" mode characterized by fatigue and increased pain sensitivity. It's meant to limit function and reduce overall activity levels, not prevent functioning completely. So you can push against the fatigue and it will retreat and pain will decrease, allowing you to function better, at least for a short while. But it also requires a lot of stimulation for the body to do that, and doing so will cause increased fatigue afterwards.
My situation is definitely closely related to the stress response, although no idea how. I used to basically 'live on adrenaline'. My first symptoms came on when I was in high adrenaline situations (martial arts etc) and I became unable to process things fast enough to take part effectively. Fast forward, now any stress affects me way more than it used to, emotionally and physically. I do have POTS, ADHD and anxiety (as well as ME).
It's a form of 'tantalus effect' - reach out, seemingly achieve desired functionality, only for it to disappear as a result of reaching out. I'd also use a starter motor analogy - even if there's enough charge in the starter motor to get the main engine to turn over, there's never enough output from the engine to put enough charge back in to the battery for the starter motor to perform reliably next time. Not that I'd suggest this analogy is anyway descriptive of the actual biology of ME/CFS. Likewise I'd say it's important not to take the terms we use as shorthand - adrenaline, stress hormone, endorphin etc - for certain biological states, as indicative of some actual biological process. The chemistry of our bodies is incredibly complicated and any one secreted chemical can set off far reaching cascades and cycles, each producing more cascades and further cycles. We are mostly predisposed to find clear, well ordered answers to problems and to look for meaningful patterns, and that obviously works in many circumstances - in the case of ME/CFS we may have to accept that what we are dealing with is somewhat messy.
I think of that adrenaline surge as more related to increasing dysautonomia which despite the temporary feeling more able signals a decline in functioning. I would get adrenaline surges quite randomly. Although this might be slightly different from what @Borko is describing. I remember best the powerful surges that occasionally woke me in the night startlingly awake. But there are less powerful surges and I think they happen to help the body get through some activity and my experience is also that there is a payback.
Perhaps you have low levels of cortisol? It can be tested for. https://en.wikipedia.org/wiki/Adrenal_insufficiency
I think what may be happening is that I can't tolerate for long the stimulation of the nervous system that is required to allow me to function. Alternatively, the stimulated feeling may be a response to subtle injury caused by the exertion (maybe blood perfusion problem?)
i had never heard the term 'Tantalus Effect' but it is spot- on for me. I may have a t- shirt made(!), as at least it would generate a different conversation than: How ARE you? Or the classic follow on: Well you LOOK so well!!!
Its while since i read this thread, wasnt well enough to comment at the time & not up to reading it all again now but i wanted to say that for many yrs i been wishing researchers would look into what happens in the bodies of PwME when the sympathetic nervous system is activated, because for me the effect is spectacular. I wrote this as a response to @Keela Too 's poll thread on being 'dangerously ok' but i think it fits better here really. I dont know whether anyone called the adrenaline effect 'dangerously ok' on this thread but i copied this which reflects my experience entirely. I am utterly certain that my 'dangerously ok'/'oh shit i feel really good' is caused by the sympathetic nervous system response - ie fight or flight. And something involved in that - which its reasonable to assume is the adrenaline release as what happens is a predictable result of adrenaline release in any animal i think: more energy/strength/stamina/alertness/mental & sensory sharpness/tolerance of things normally painful, and reduction of any current pain. These are all things that are necessary to fight or run away from a predator. It is completely tied to the stress response for me. And that sympathetic nervous system response is triggered by physical trauma as well as emotional distress i think. When i'm calm/relaxed i could never be 'dangerously ok', because i am never without my body's signals. I am always feeling ill to some degree. Full stop. I am only fooled into thinking i can do more than i can, when my bodily signals go low enough that it feels like i can get away with it. I can totally understand how people get in accidents and have massive internal injuries but feel completely fine. Because i can be incredibly ill, unable to stand up, unable to speak, in terrible pain with all kinds of symptoms, but if you make me angry & scared, within about 10mins its transformative, it feels almost miraculous. It takes me from that state to being able to stand up for a few moments & slowly walk (stagger) a few steps, speak & understand a few words, & the pain level goes down like I took medication. It wont take me from crash to my best by any means, but it will take me up several notches. And if i am well rested & at my best, it will take me from ill but not too bad, to feeling almost well (for a short period). And its so dangerous because it feels so real. But if i allow myself to be conned and think 'oh i suddenly feel a bit better' & act accordingly, the punishment will be incredibly severe. That whole thing that people describe of having better periods where they think they doing a bit better & so they let off the brake or push a bit more... thats alien to me. I understand pushing through/ignoring symptoms (when not in PEM) & then - causing more/worse PEM. I understand denying/pretending to oneself being better than i am. But otherwise i dont have improvement, ever. Its just bad, very bad, or very very bad. Except when i am anxious/scared/angry. Adrenaline/sympathetic nervous system response makes many of my symptoms just disappear (while it lasts). You should see my co-ordination and gait when i am angry/scared, it is completely normal! Whereas when calm, even well rested i cant use a smart phone because i cant hit the right letters on the screen to text. I can even do multi-tasking if i am very angry! The difference is so staggering that lay friends etc have suggested finding some way to get adrenaline injections as a treatment. But what they dont understand is that its a con. Its like taking morphine so you can walk on your broken leg, and for years i didnt understand what was happening. I use symptom contingent pacing mainly, & so initially it took me a while to connect the relief with the fight flight response.... i just kept going & going & then couldn't understand why the crash was so bad because i'd felt able to do it all. But it wasn't real, my symptoms were being masked. I know some people say their symptoms are worse when they are anxious. But mine are soooo much better! And that's why i think this theory of the nervous system being stuck in fight or flight mode in PwME is such drivel, for my ME at least, because its just totally contradictory to my experience. Sorry, that was very looong! funnily enough i in that adrenalined state right now... - it doesnt make the quality of the output any better just enables more of it Edited 3rd paragraph slightly: to clarify - realised my vocabulary made it sound more 'miraculous' than i intended
I wonder how this relates to the 'tired but wired' experience that prevents me sleeping when I've done too much, and is often the first sign of PEM for me. Could that be an effect of running on adrenaline, and the body taking time to calm down and clear out the adrenaline after the activity that provoked the adrenaline. Sometimes it keeps me awake all night.
Very much this for me too, though I'm not sure whether it's definitely—or solely—down to ME. (For background: as some of my symptoms don't match ME, I've been behaving as if I have hypokalaemic periodic paralysis for a few weeks to see what happens. I've had a lot more function since then, and no incidences at all of tired-but-wired or the 'flu-ish feeling when I've done too much. I just get pain when I've overused my weak upper leg muscles, and go all floppy and narcoleptic when I can't resist eating carbs.)
yes i get the same. I hypothesise (in a very 'lay' manner), that the body also releases adrenaline when it is injured/physically in trouble. So if i inadvertently overdo it a lot - eg i get very 'into' doing something & dont realise how much i'm doing (eg on S4 or some other cognitive task) then i will get the tired but wired - its not quite the same because i can feel the pain the same, but the mental alertness is very odd - i took amphetamines once (as part of my mis-spent youth & it feels just like that. Now the BPS pack would i suppose say that i feel anxious about the payback when i realise i have done too much & hence the adrenaline... but that cannot be so because sometimes its the tired but wired effect itself that alerts me to the fact I've overdone it eg 'wow i am so wired... but i'm not anxious... whats happening? have i overdone it, think back.... oh dear Jem, doing that and that and that and THAT was pretty idiotic! no wonder you're wired' The pay back if you think that is a real 'energy' & keep doing, is particularly evil in my experience. ugh