Fatigue: late night or early morning type?

[alex3619]

@Hip or @Alex Wouldn't this class of drugs (stimulants) like Ritalin or Adderall cause tachycardia? I always felt they were not an option for someone who already has POTS or unexplained tachycardia. I have no judgement against the meds (or really against any meds!) they just scare me for that reason.

I don't know for sure, and don't have the energy to investigate it just now. Maybe. Certainly this class of drug would not be for everyone. The person who most comes to mind who uses this, who I have discussed this with at some length, does not have POTS. Only arguably half of us have POTS. Most of us have some kind of OI though.

 

[jimells]

I describe the fatigue/exhaustion/whatever as an overwhelming urge to lay down.

Morning is definitely the worst time for me. Getting out of bed is difficult, and the first time up lasts only a few minutes. An hour later I can be up long enough to make coffee, take fistfuls of supplements,etc.

If I exceed the energy envelope and trigger PEM the most prominent symptom is a migraine attack, which almost always start between 4 AM and 7 AM, a day or two after exceeding the energy envelope.

Another interesting observation is that CoQ10 appears to turn down the brain's sensitivity control on light, sound, and migraine pain intensity. I used to wear musician's ear plugs (they only attenuate loud sounds) every morning because the morning calls of my cockatiels hurt too much. I no longer need to do that, even during a migraine attack.

 

[A.B.]

A simple question from an ignorant doctor. I got up at 4.00 to drive someone to the airport. That set me wondering. Is the fatigue of ME like the end of a long hard day or more like the beginning of a day that should never have started yet? For me the second type is more unpleasant.

Or is it like neither of these?

In my case, it's a unique sensation of exhaustion that is different from fatigue experienced during an infection, different from the fatigue after hard exercise, or a long day of work, or getting up too early in the morning, or from disrupted sleep. I don't know anything else that causes similar symptoms.

Out of all these it seems closest to morning fatigue though, and indeed, mornings tend to be the worst.

It's also more than just exhaustion. It would be more appropriate to speak of malaise and exhaustion.

It is a visceral feeling mostly felt around the head and torso. I don't think muscles are affected much.

Edit: and I agree that there are actually different types of this malaise and exhaustion, depending on circumstances and in response to different types of demands being placed on the body. The above is the chronic constant low intensity fatigue that never goes away fully and doesn't respond to anything. The fatigue in response to exertion is a different beast, it resolves quickly and can be managed. And during a relapse of weeks to months, it's yet another type still.

The ME International Consensus Criteria speak of "being unable to generate sufficient energy" and that rings a bell.

 

[Sushi]

@Hip or @Alex Wouldn't this class of drugs (stimulants) like Ritalin or Adderall cause tachycardia? I always felt they were not an option for someone who already has POTS or unexplained tachycardia. I have no judgement against the meds (or really against any meds!) they just scare me for that reason.

I don't have POTS -- rather neurally mediated hypotension, but in the period that I took Adderall, I had daily short bouts of tachy--maybe 30 seconds at a time. (I no longer get this.) For me, Adderall didn't exacerbate this or seem to affect the pattern at all.

Sushi

 

[Jonathan Edwards]

I am a bit worried that by inducing all this frenzied posting I may have induced a worldwide crash of PWME! Personally, I think I could do with a bit of shut eye, and I have set the alarm for 7.30 this time.

It seems ... the brain stem or not the brain stem ... that is the question. It has to be one or the other (or maybe both). There has to be a reason why it has to be whichever one or the other (or both). Maybe tomorrow and tomorrow ...

 

[OverTheHills]

Thankyou for asking. Thankyou above all for listening.

It is a strange world lately: being listened to, high profile people flocking to our cause.

Can't celebrate with a glass of wine (alcohol intolerance) a peice of cake (gluten & dairy intolerance) or a jig (PEM). So its the usual PWME virtual celebration from bed.

Sleep well - someone has to!

OTH

 

[Gingergrrl]

@OverTheHills

OTH, I love your post and it is a strange new world with all these high profile people listening to us and helping us. I am so humbled and very grateful. Both to Prof Edwards and Dr. Solomon here on PR and all the new researchers added to OMF.

I would love to join your virtual celebration but also have alcohol intolerance, on a super strict diet with no gluten or dairy, and cannot dance a jig (dysautonomia and PEM....)

Maybe I will drink an extra large glass of Pedialyte in celebration <sarcasm> and .

 

[PennyIA]

My bugbear is lightbulbs. Changing one with arms overhead can be purgatory. I've also found my best friend is now the portable electric screwdriver!

Actually, raising my arms over my head for ANY activity is an immediate trigger for utter failure. Sometimes it's milder - like washing my hair causes a need to go lie down... but anything else that's longer than that? Is a disaster. I remember I wanted to wash the shower curtain. I could only unfasten one hook a day before crashing for hours. With 12 hooks, it took a week to get about half of them undone - and honestly, at that point I gave it up and it's still half hanging and unwashed. Replacing it and having my eldest son set it up is easier than managing to take it down. AND this is while I'm in remission and working full-time - not just the times I've ended up bed-ridden during flares.

Since my son is exceptionally tall at 6'7" - I make him do all the lightbulbs and anything else above my head as well. There's just no sense putting myself through it any longer.

 

[NK17]

I think this is possible. In the 90s, as only a mild patient, I had to give up hanging up my clothes to dry on a line. Instead I use a clothes dryer ... the same one actually, 20 years old, and still going.

Nothing can beat line sun dried laundry, right?!
Well because of ME that is one more thing I had to give up!
I hate the noise of my 16 years old dryer.

 

[PennyIA]

Believe it or not, I actually did not know this! I have orthostatic intolerance now (or some form of it according to my new cardiologist) and doing anything that involves lifting my arms above my head is probably the most difficult of everything that I do. For example putting a plate into the microwave (which is above my head) or trying to blow dry my hair lead me to become short of breath. Even if I try to blow dry my hair while seated it is the same, so I didn't make the connection b/c I am not standing. Do you know why this occurs?

I didn't connect these dots either - although I know I've suffered from OI related issues in the past - I didn't connect these two dots.

FWIW - I mostly let my hair air dry right now... but if I need to use the hair dryer, I've found it's easier if I'm seated, and leaning forward with my head hanging down. Doesn't do much if you are trying to do any styling (but I gave that effort up years ago)... but if my head isn't any higher than my heart, it's easier for me to hold the hair dryer at that height. I've also switched to travel air dryers ages ago (carpal tunnel and the like issues) to reduce weight.

 

[alex3619]

Nothing can beat line sun dried laundry, right?!
Well because of ME that is one more thing I had to give up!
I hate the noise of my 16 years old dryer.

Line/sun dried clothes smell just right. Sigh.

 

[Cheesus]

I never feel "good tired" - the kind of well-earned tiredness you get after a long walk where you know it's going to wear off in a short while and leave you refreshed. There's always a sense of illness about it.

I've had that once and it was awesome <3

 

[Snow Leopard]

I never feel "good tired" - the kind of well-earned tiredness you get after a long walk where you know it's going to wear off in a short while and leave you refreshed. There's always a sense of illness about it..

Yeah, that's one of the things I miss most, strangely enough.

 

[Sasha]

Yeah, that's one of the things I miss most, strangely enough.

Me too - that feeling that you've worked hard and healthily tired yourself out.

 

[MeSci]

I dislike the term "fatigue" about as much as the use of "malaise" in PEM.

On a good day, I would go along with the analogy "nothing left in the tank". My body feels starved of the fuel needed to be active.

On an average day, my muscles will start to ache about 10 seconds into an activity, such as cleaning my teeth. If I continue on, the muscles weaken and fail.

On a bad day, even lying motionless I am wracked with pain all over, I barely have enough energy to breathe, am nauseous, "fluey", light and sound sensitive. When this state drags on for weeks at a time, unremitting, I become scared that this is my new "normal" and I literally want to die.

Of the two choices given, I would say that disoriented state of getting up too early was closest, but only because of the fuzzy-headed, slightly nauseous feeling that can occur when woken up from a deep sleep. It does not encompass the " running on empty" aspect as the body works normally once it's up and out of bed, the head just needs a little extra time to "catch up" with the sudden and unexpected activity (hope that last line makes sense).

I just looked up malaise and it does indeed seem too mild for PEM other than a mild form.

I've tried before to think of appropriate alternatives. Just looked at a thesaurus and synonyms include illness, debility and sickliness. A definition for sickliness is incapacity. Then there is sickness.

I think that incapacity is quite good to describe the inability to do things, but doesn't describe how ill we may feel.

Mega-malaise?! Ghastliness? Pseudozombieism?

Re the head catching up, I also get the opposite - when walking up a hill, my mind may be at the top but my body is struggling way behind.

 

[MeSci]

@Revel Agree 100% and I wish we could abolish those two terms in favor of something that expresses the body's inability to create energy on demand (like a mitochondrial toxicity.) I like the newer term PENE (post exertional neuro exhaustion) much better.

I'm not sure about PENE, as I'm not sure that the exhaustion is based in the nervous system. It might be, but maybe it's an assumption too far at present while so little is understood.

 

[Revel]

@MeSci, the problem with the term 'PENE' is that unfortunately it doesn't translate too well into Spanish .

 

[MeSci]

@MeSci, the problem with the term 'PENE' is that unfortunately it doesn't translate too well into Spanish .

Oh dear - just looked it up!

 

[MeSci]

None of that is a 'good tired' after a long, busy day. I remember that feeling well and miss it desperately as that is the muscles being tired but healthy and filled with 'happy' endorphins that reward you for the busy, active day. I've always wondered if part of the problem is that process and 'reward' physiology being broken. Even when I walk for ten minutes (or longer during periods of mild symptoms), yoga, pilates - all used to trigger endorphins - but nothing now.

I mused on this and other possible reasons for the lack of positive affect following exertion in ME in this blogpost.

 

[MeSci]

I know Jonathan isn't trying to irritate us, but if he is still reading and interested in more descriptions than accumulate in this thread, there is a whole sub-forum on fatigue and at least one old poll where people ticked boxes for the types of fatigue they get.

OTH

This one? It's closed now.