Fatigue May Be the Wrong Term

[Iknovate]

I've been ruminating a lot lately about the terms we use. I'm not advocating for changing anything, just to invite more thought about it.

We all have experienced some of the challenges with using the word fatigue. Everyone is tired and drained, especially parents. It's too easy to consider it something to 'get over'.

When I was in my 20s and 30s struggling, I could sleep for ever and wake up more tired than when I went to bed. Now I struggle to sleep for 6 hours.

More specifically I've also been paying more attention to the 'pain' aspect of our discussions. Please know I'm not talking about serious pain. Eventually unable to stand or walk from back pain, I know what that is. But I remember when my daughter first mentioned my labored breathing and I really didn't know how to describe it. It really didn't qualify for laborious pain but I had to use some term like 'hurt'.

Now that we have a much greater understanding of what's going on with the Mitochondria in an anerobic state, there's a term I focus on more: stamina.

Fortunately, the definition fits well: "the ability to sustain prolonged physical or mental effort"

We struggle with stamina endurance. It's not that we're tired, we can't perform because the energy isn't there. Tired is different. It's the result of spending energy. We never got the chance to start spending.

The pain mentioned earlier seems to be more of a constant strain, just to hold your body up or even for your muscles to hang from your frame.

I can't relate to approaches to minimize effort as I believe some strain can be helpful (particularly if outdoors with increased sunlight exposure, avoiding mid-day which is draining). However, I am becoming more sensitive to how far I go for how long and for long periods of rest and recuperation. The results show up in improved recovery scores on my Whoop.

Thoughts?

 

[nerd]

I agree. It's not really the kind of fatigue someone experiences on a lazy Sunday. No idea what really fits best - fatigue, stamina, exhaustion, malaise? When I wasn't aware yet that I have CFS/ME, I called it a lack of fitness, still following the illusion that nutrition and activity could somehow fix my condition.

 

[Rufous McKinney]

The term fatigue just does not remotely get at the whole suite of unravelments this seems to come with.

I try to avoid the term. "Its neurological" is an utterance i imagine uttering, were I near anyone to talk to who cared. Which generally I am not.

My husband is here, he cares, he is in his own land of escaping his own pain issues, different version

Pain is a key thing with this- but its odd as I largely am simply just used to it. Its just around all the time in this dull and distracting way.

And I do some pain masking. So I'll simply notice- wow am I sore- when I got to bed and sort of melt into the mattress.

So today, getting up, doing a few things, got a cup of something going, and sat down in the chair as if I 'd just run a marathon, and there is no stamina. ANd by 3 pm today there will be less stamina.

There is a constant strain in the body- anti gravity. Read about gravity. We work against gravity every time we stand up-its the MASTER workout. Its why astronauts suffer in no gravity.

So I"m sort of good at: standing up...but not standing very long. I bop up alot. And then- tell myself to not stand long.

Makes sense, right? And so maybe my current mediocre feeling that i am sort of endlessly crashing- is from my standings.

 

[pattismith]

I agree fatigue is not the good term.

I remember the first time I went to a doctor, trying to explain something was wrong with me, and I was just able to explain that I was feeling tired and weak.

Then I went to an endocrinologist, and said the same.

Then I went to a rheumi, then a neuro....and said the same...

I got the same answer/ okay just have some rest.

They couldn't understand (and I was unable to explain), the lack of consistency between my life and the fatigue feeling.

Now with 30 years into this illness, I think I would have better explained if I had spoke about sleepiness, drowsiness, sleep deprivation intolerance, ...

 

[andyguitar]

The term fatigue just does not remotely get at the whole suite of unravelments this seems to come with.

No it don't. It's an inability to perform ordinary tasks.......because of... what could you say? Anything except using the word "Fatigue"

 

[YippeeKi YOW !!]

what could you say? Anything except using the word "Fatigue"

Unstable stamina? Fragile stamina? Unsustainable stamina? Non-renewable stamina? Stymied stamina syndrome?

I agree with @Iknovate .... 'fatigue' has always irritated me, because with ME/CFS, it's soooo much more than that and so much harder to describe without falling into the perceptual traps already mentioned. Fatigue is the natural by-product of normal exertion, extensive or otherwise. It's what non-ME/CFS'ers feel after cleaning out the garage, or getting a poor night's sleep, or a riotous, over-enthusiastic night on the town, all efforts that most of us can only dream about. Assuming we can get to sleep ....

'Malaise' is even worse, with its connotations of moral insufficiency and vagueness of complaint ....

 

[Wishful]

We struggle with stamina endurance.

No, sorry, but that is not true for all of us. I wake up feeling groggy and sluggish, but I do not have a problem with stamina. My ME never reduced my physical stamina, so I would conclude that my body's mitochondria are working normally. My 'fatigue' is neurological. My legs can manage a multi-hr ride, but my mental energy to make myself do that without great need just isn't there. If there was dire need, I could probably ride all day (butt soreness aside). So no, ME's 'fatigue' is not simply a lack of ATP.

'Malaise' does have those bad connotations and vagueness, but to me it does fit my symptoms better.

Honest fatigue, from hard work, definitely feels different from ME. I think the feeling from lack of sleep is a closer fit, but I wouldn't refer to that as 'fatigue' either; I'd call it a lack of the restorative effects of sleep, which involves clearing of waste and probably other processes we don't understand yet. There should be some way to measure the differences in brain function caused by such things as sleep deprivation, brain inflammation, and hopefully, ME. Maybe EEG while doing specific tasks? Maybe it would also require measuring cerebral blood flow, oxygenation, or some other factors.

How can we communicate properly with doctors when we have such vague and inaccurate terminology?

 

[Rufous McKinney]

How can we communicate properly with doctors when we have such vague and inaccurate terminology?

After decades of "chronic Eppstein Barr"...which is what I was told I had (medically impossible, they said in 1974)..

I recall going to the doctor in 1993. " I must have mononucleosus again".

thats what I said. Low grade fever swollen glands run down road casualty.

"You sound stressed".

Points to handbill on bulletin board: "Take Yoga Class."

I never saw that doctor again. I never pursued I am so tired, at a the doctor. I pursued actual real symptoms and that did not matter, either.

I just gave up on medicine so long ago. I didn't adopt the " I have the Yuppie Flu " concept. I have something real, I don 't know what these people are talking about.

I was visiting the doctor more recently focused on the mysery in my mouth (angiodema, Sahara desert, choking).

They put a person who is choking, on Zoloft, so I then : could have died choking. Threw it out.

Its 2017 before I accidentally changed insurance, and that was when I found My Doctor Who Cares (sort of, a bit).

 

[Jyoti]

How can we communicate properly with doctors when we have such vague and inaccurate terminology?

Such an excellent point, @Wishful.

 

[Iknovate]

... still following the illusion that nutrition and activity could somehow fix my condition.

I've spent thousands on nutritional supplementing and advice for 2 years and seen to only be getting worse. Backing off much of the supplements now.

 

[Rufous McKinney]

Backing off much of the supplements now.

I spent most of a year not taking most of my supplements and most of my herbal teas.

Because I was too weary to continue-mostly. Taking a few things now, again.

 

[wabi-sabi]

We might even say Systemic Exertional Intolerance Disorder!

 

[Rufous McKinney]

Systemic Exertional Intolerance Disorder!

thats actually what my Doctor ...he diagnosed me with: He lept up and down in the office, right towards the end of my appointment, then rushed excited to spread the word to the receptionist (who covers for chart completion).

She has "SAD" he said.

I thought he meant- I had Seasonal Affec____ Disorder the - "she needs a tanning booth" illness.

See: that can be included in our ME Screenplay Comedy.

Which I hope includes casting tryouts.

(editted 5 seperate times for typos, ongoing)

 

[wabi-sabi]

Which I hope includes casting tryouts.

Hmm... wonder who will play me?

 

[Iknovate]

We work against gravity every time we stand up-its the MASTER workout. Its why astronauts suffer in no gravity.

I feel the gravity of that observation
I had a nurse mention something recently that I stole. When asked to give a number to his pain the patient said, "Pi". It's low level but constant.

I've actually seemed to minimize my pain quite a bit lately trying to eat low deuterium and recognizing when to quit.

It's a daily learning exercise and constant experimenting. Seems unending (just like the decimals).

Stymied stamina syndrome?

I'm up for all of those and love your creative effort

but I do not have a problem with stamina.

We are a varied bunch. Oddly, I had dismissed the ME/CFS term and related discussions for decades (only returning recently) because most discussions seemed to focus on fibromyalgia. I had friends with fibromyalgia and knew mine was different. Unfortunately standard medical condition codes don't differentiate between myalgia and fibromyalgia. I regularly have to educate anyone looking at my record.

I'm wondering, it seems you can't have a Mitochondrial issue if you don't have stamina issues. That's where the lactic acid and the pain comes from is anaerobically-malfunctioning mitochondria.

Because I was too weary to continue-mostly.

I totally relate. I've skipped many days in the past because my body just said so.

 

[Sidney]

I don’t think that lack of stamina describes it. It is pain; not in the musculo-skeletal sense, or the toothache sense, (though it certainly can include ordinary personal aches and stress pains).
I’ve never manage to communicate it, but it just IS pain, no other word can convey the horribleness.
i wish one could say: imagine if most of your systems failed, at once - circulatory, immune (like a terrible flu); everything autonomic in fact - and cognitive, its own misery; plus you had a migraine; and standing is torture, and you need to gasp for breath after anything even though your lungs show as medically just fine; and talking to your once closest friends (or anyone) is a huge effort and you sadly procrastinate doing so..
.
it would be slightly different for everyone of course, and take too long.
AND it fluctuates all the time.
Is there a word for complete system failure? Deathly?

 

[Iknovate]

I don’t think that lack of stamina describes it.

Would you be willing to consider applying the term at the Mitochondrial level? Because that's literally what's happening. What I'm trying to express here is that we may simply not be thinking about it in the right way. The more we learn and understand the clearer our perspective.

All said, I was recently been studying the work of Jack Kruse. For the past two days, as soon as I could convince myself to crawl out of bed, I go to the east side of my house (fortunately that's my back yard with a large deck), without my glasses and just sit and let the sunlight into my eyes. Jack has a whole theory about repairing Mitochondria with the spectrum of sunlight. Then I stay outside until at least 10 am, working in the dirt.

Nature therapy seems to help me. But I do rest a lot after.

 

[Rufous McKinney]

I totally relate. I've skipped many days in the past because my body just said so.

Yeah- gastroperesis sets in here,- periodically. Now I'm not drinking much liquid. Not hardly drinking a glass of water.

So- the vitamins- I get two in and then rather- give up.

 

[Rufous McKinney]

and talking to your once closest friends (or anyone) is a huge effort and you sadly procrastinate doing so..
.

Home Run Statement There: Our Absurd Lives...

 

[Pyrrhus]

Personally, I don't use the word fatigue when talking to doctors.

Instead I like to break it down into two separate symptoms which often occur together:

1. Paresis (muscle weakness)
2. Cognitive dysfunction (brain fog)

Doctors seem to grasp these concepts better than "fatigue"...