"I have lots of energy, i just can't use it" - is this experience familar to anyone else?

[Guwop2]

I recently had to complete a questionaire in advance of a meeting with a TCM pracitioner and when asked how my energy levels are, I responded:

I have lots of energy, i just cannot use it otherwise I will crash badly/ experience ‘PEM’
(post-exertional malaise). Energy is not the issue, my body and mind are just intolerant of all the activities
that energy can express itself through.

Further on in this questionaire I wanted to clarify the following:

I must stress that I do not feel tired or sleepy - the fatigue I feel doesnt make me
tired/sleepy, it is the feeling of fatigue when you have a virus. The body refusing to act
and when you try to defy this you’re punished with an increase in pain and a further
inhibition of the body’s motility.

I mention all this in a thread because I find it very common to read from pwme/cfs that they lack energy, when my experience feels significantly different. I was wondering whether my experience is uncommon, or whether 'lacking energy' might just be an approximate slightly lazy description of the problem?

 

[Dysfunkion]

Exactly this. I have all the motivation and drive in the world, I lack a specific kind of energy that like runs the body at a baseline whatever that is. It feels like there isn't enough fuel for my brain but nothing seems to help. The wires themselves aren't transmitting strong enough signals I could possibly describe it as. People could also just be personally describing things in different ways based on what they view as energy. In terms of motivation and drive I have high energy but in overall functioning I am always hovering over the bottom one exertion away from "the pit".

I don't specifically feel sleepy all of the time though when I do lay down after falling asleep getting up is like climbing mount Everest. I actually have a pretty solid sleep schedule. I got to bed at 11 PM roughly and wake up at 6 AM. When I'm near or in a crash though it'll be harder to fall asleep and get into a comfortable position . The over arching theme with me is heavy and slow. I found there actually is a way to hit mild for me but it's nearly impossible to hold up without doing almost nothing forever which isn't practical since I can't just live like a rock my whole life.

 

[Guwop2]

Thanks for writing this @Dysfunkion , it's comforting when someone else confirms similar symptoms.
In the absense of a cure or treatment, I find these descriptions important to getting a sense if it is indeed me/cf that im suffering from. My diagnoses was made by a local GP, then confirmed by prominant researcher of ME in the UK, and all they went on was that that my bloods were all normal, that i reacted badly to alcohol and my verbal account of the experience of the illness itself. In trying to target the illness with varous experimental things (abilify, ldn, etc) all im really going on is whether others who have tried this or that have symptoms that resemble mine, and this feels largely limited to how much of it they are willing and able to describe. The illness is so strange because some things tally with others, other things don't.

Have you by any chance tried low-dose ablilify or LDN?

 

[Wishful]

I'm not sure whether I fit Dysfunkion's description or not. I'm generally lacking in motivation; I rarely feel like I want to go out and build something or do something, not like I felt pre-ME. If I really need to do something, such as cut up a fallen tree, I have the strength and endurance for the task, but there's a mental hurdle that makes it a challenge. For tasks that aren't immediately necessary, the motivation to face that hurdle just isn't there. In my case, I no longer trigger PEM from physical exertion, so that's not a deterrent factor for me.

For those times that I do manage to do physical effort, such as spending hours digging soil or bike riding, I feel normally fatigued on top of ME's "fatigue-like" symptom. ME's symptom is also unrelated to sleepiness (at least for me). Look up "central fatigue" and see if that fits your perceptions. I just checked the wiki, and it has a paragraph on central fatigue's role in ME.

I have another thread going about why I dislike the term "energy" applied to ME's symptoms. I feel that it is misleading.

 

[Dysfunkion]

Thanks for writing this @Dysfunkion , it's strangely comforting when someone else confirms similar symptoms.
In the absense of a cure or treatment, I find these descriptions important to getting a sense if it is indeed me/cf that im suffering from. My diagnoses was made by a local GP, then confirmed by prominant researcher of ME in the UK, and all they went on was that that my bloods were all normal, that i reacted badly to alcohol and my verbal account of the experience of the illness itself. In trying to target the illness with varous experimental things (abilify, ldn, etc) all im really going on is whether others who have tried this or that have symptoms that resemble mine, and this feels largely limited to how much of it they are willing and able to describe. The illness is so strange because some things tally with others, other things don't.

Have you by any chance tried low-dose ablilify or LDN?

I've been eyeing LDN but some people it has made worse and I can't afford that right now, maybe when my life is more stable but right now I'm just waiting out an accidental pitfall I had recently trying not to fall further. If I do try at some point which I probably will as I don't feel like I have much else to try as I think at this point I've tested the supplement rainbow I'll let everyone know how it goes. The only other thing I wanted to give a try was ultra low dose glutathione but that also appears to e very volatile in how things can go. Alcohol is something I don't even touch anymore, not a single beer. It's the worst for me, after just one beer I already feel so intoxicated that I can't do anything. It can't be the alcohol alone since it's an incredibly small amount but some byproduct my body makes in response to it. The last time I was able to have a drink and feel relatively normal was in the very beginning of my 20's.

 

[Guwop2]

I tried and LDN and didn't get on with it at all, endied up crashing for a few months. Im eyeing Abilify now and so far I havent read of anyone crashing real bad when taking it.

 

[Zebra]

I don't know if this rings true for anyone else, but I often tell doctors that my body and brain lack stamina.

The dummies still translate that into "fatigue," but I know what fatigue feels like, and I get that, too, but the lack of stamina needed to complete the simplest activities of daily living is astounding.

 

[southwestforests]

I mention all this in a thread because I find it very common to read from pwme/cfs that they lack energy, when my experience feels significantly different. I was wondering whether my experience is uncommon, or whether 'lacking energy' might just be an approximate description of the problem, used to bridge a communicative divide quicker for the sake of, I dunno, getting a diagnosis and treatment?

Hmm, not sure what to say, my experience is currently not clearly one way or the other way, it seems mixed, sometimes this, sometimes that.

but the lack of stamina needed to complete the simplest activities of daily living is astounding.

Ahh, now this, this is a clear and frequent yes.
Prior to ME/CFS hitting I was in retail and could do an entire 12 hour Christmas season sales day on my feet after unloading the delivery truck and come right back for another one tomorrow.
Now, however ...
Vacuum a room, (hoover a room for y'all in the UK) (what's with British English anyway, where on earth did y'all get that language from?)(oh, and the vacuum I have now is an actual Hoover brand, this one is great with cat hair and litter crumbs) and I have to go sit for a bit.
Carry groceries in, same.
Change sheets on the bed, same.

Except for carry the groceries in in hot weather like today, the above have also been interrupted by, "Okay, enough of that, gotta go sit for a bit then come back to finish."
There are times where the food has been carried in but the dry goods have to be left till tomorrow.
Which has a few times ended up being two days later.

And ...

There are more than three or four times the grocery shopping itself had to be stopped not completed so I could drive home while I could still drive home.
Fortunately the grocery store is pretty much right across the street from these apartments.


Last few months, reading has been a stamina issue.
Reading?
READING?
Seriously, READING???????

Yes. Reading. Sitting or reclining in one place doing nothing more physical than turning pages, or sometimes both holding the book and turning pages.

I used to could read about two pages a minute, for hours at a time.

Have a modern reprint of a really cool space station and off-Earth living book from 1976 which arrived in mail this morning.
Read 2 pages and I'm done for a while.

Read 2 pages and I'm done for a while.

Read 2 pages and I'm done for a while.

A couple hours ago I gave up in frustration.

 

[Guwop2]

Last few months, reading has been a stamina issue.
Reading?
READING?
Seriously, READING???????

me too. as of last october when I took some high strength b1 I now cannot read more than a page or two in one sitting without crashing despite wanting to even after the crash . this has without a doubt been the biggest catastrophe for me. i just doom-scroll social media and youtube now until it's sleepy time again

I did try audible because of this new intolerance. i dl'd the new China Mieville book, but the prose requries too much concentration apparently. Julia Fox's autobiography, on the other hand, was a breeze to listen to as it demanded next to no concentration lol. looks like my literary preferences are going to have to change. Hard to believe I was able to read Middlemarch just a few months before my B1 mistake

"he had catched a great cold, had he had no other clothes to wear than the skin of a bear not yet killed"
- George Eliot, Middlemarch

 

[Dysfunkion]

Last few months, reading has been a stamina issue.
Reading?
READING?
Seriously, READING???????

Yes. Reading. Sitting or reclining in one place doing nothing more physical than turning pages, or sometimes both holding the book and turning pages.

I used to could read about two pages a minute, for hours at a time.

Have a modern reprint of a really cool space station and off-Earth living book from 1976 which arrived in mail this morning.
Read 2 pages and I'm done for a while.

Read 2 pages and I'm done for a while.

Read 2 pages and I'm done for a while.

A couple hours ago I gave up in frustration.

I'm going to try to find my hard limit soon myself but aggressive pacing and breaks may be the answer, I know continuous activity is a major contributor to the issue with me but if there are breaks I can handle more depending on what my previous baseline was at the time but as I get more severe the pacing window with things like reading gets even smaller. I love reading too and I don't think I'm ever gonna stop cracking this one till I got the pattern down right.

 

[xploit316]

I have all the motivation and drive in the world, I lack a specific kind of energy that like runs the body at a baseline whatever that is. It feels like there isn't enough fuel for my brain but nothing seems to help

Exactly this for me too.

 

[Dysfunkion]

Exactly this for me too.

I think some sort of consistent neuroinflammation is a big culprit, today I had some activated charcoal and a dose of osha root. I was really lethargic as the combination tends to do that but later my emotions, speech, and ability to do things were better at a baseline. My speech also improved a lot and I was able to from words correctly and string together sentences with no issues for a window of time during the day. I'm not sure what else it could have been if that combo does that. I can't take that every day though because of the other side effects.

 

[Blazer95]

My brain has Lots of Energy. My Body doesn't.

 

[Dysfunkion]

My brain has Lots of Energy. My Body doesn't.

Wasn't that the whole general concept of that "Me/CFS a new hope" document if you read it (I don't put all my eggs in this basket but it makes a lot of sense, I have the PDF) by virally induced upregulations of proteins where the body is technically creating too much energy and byproducts where things get put into a sort of power saving mode to preserve the body? Which apparently according to it results in absurd levels of neurogenesis ironically but a million cognitive dysfunctions due to the extreme over abundance of metabolites and loss cycles of them at the same time.

I find the pattern with me through exciting activity based crashes that I'll get an initial upsurge in energy but it'll be really unstable and incomplete as this goes on the sensory overload will increase until I hit a peak where all of a sudden all enjoyment and positive feelings stop yet the over stimulation continues, this is where I'll start to get the "overheating brain" thing and feel it quite literally, and from there if things don't stop it's all downhill, and the longer the offender lasts causing it the worse/longer that crash takes to get back up from.

This makes me wonder if last Summer when I got PFS (post finasteride syndrome) on my terrible supplement stack which lead to way too many byproducts under the model I mentioned up in my first paragraph while in the previously moderate CFS zone was the real culprit in how I crashed so hard to the point where everything in my nervous system burned out, went numb, and left me with nothing but crushing fatigue/anhedonia, and weakness with waves of intense brain burning through the earlier months of my journey.

 

[beingsamiracle]

This is a very interesting thread to me as I also feel great most of the time (when I don't have an actual flare up or PEM or crash or the like). I wake up feeling refreshed and by now I've learned to just not move basically as the second I do I start feeling the onset of a viral disease. Sickness behavior. Cytokine storm. Not sure what's wrong in my body but something is flaring up when the system gets stressed. It used to be just from excessive movement (which over the years became more and more restrictive), now it can also happen from a stressful conversation (like explaining to my doctor that I would like to try antivirals or hydrocortisone).

 

[BrightCandle]

When I am well within my limit for a decent period of time I feel like I have a lot of mental and physical energy, the heaviness of my limbs subsides and I feel like I could go for a walk. But it doesn't take much to push me back into headaches and heavy limb territory if I try. Avoiding PEM and resting extensively can make me feel less bad but it doesn't change the amount of energy I actually have.

 

[hapl808]

When I am well within my limit for a decent period of time I feel like I have a lot of mental and physical energy, the heaviness of my limbs subsides and I feel like I could go for a walk. But it doesn't take much to push me back into headaches and heavy limb territory if I try. Avoiding PEM and resting extensively can make me feel less bad but it doesn't change the amount of energy I actually have.

This sums up my issue, too. If I'm very careful for days or weeks, overall I'll feel physically and mentally better. But this translates into minimal actual gains. Instead of a 30 min phone call crashing me, that means I've improved so it would take a 45 min phone call to crash me. But once I do, I'm right back where I started.

 

[ruben]

That certainly isn't my experience. But as someone said on here before, "I'm not tired, I'm ill"

 

[beingsamiracle]

My brain has Lots of Energy. My Body doesn't.

Hey, I'm wondering how you got your tests done for to figure out all your lab results.

(NK-T Cells (CD3+56+) very low (close to non existant) > CD8+ T Cells low
> Serum Amyloid A elevated > IFN-y normal, IL-4 low, IL-17 low)

I'm from Germany as well and just at the beginning of trying to figure out what's wrong and hopefully find some kind of treatment that can help me get better. Any way for health insurance to pay for relevant labs? Have you found any treatments that helped based on your results?

 

[Blazer95]

its not the right place to ask this question but i will answer it and hope the others are not bothered by this little off-topic discussion.

i got most of this done at IMD Berlin, whilst NK-T cells is part of some - but not all - standard lymphocyte differentiations. Serum Amyloid A is a pretty standard marker wich is doable at most labs.

the IFN-y and Cytokines was at IMD Berlin with the so called th1-th2-th17 test.

and i havent gotten too much treatments based of that but atleast i know what i should avoid. there are a lot of treatments that lower TH17(IL17) that some users found helpful wich would be actually harmful for me. its good to get that clear. but dont expect too crazy usefulness.