Fatigue May Be the Wrong Term

[DomSaxum]

I can add that this is not a kind of weakness – I have the muscular strength I had before (i.e. not ‘deconditioning’). It is stamina that I lack, as in the stamina to walk to the bathroom and back.

 

[Emmarose47]

I really have an aversion to this condition having the words fatigue in it ...
It just doesn't cut it ...

Exertion intolerance fits well I think

 

[Rufous McKinney]

And the need to self-isolate takes a toll. I really crave interaction but have no energy to do so.

Hugs from afar!

I know it just stinks. I've been thinking about my ONE friend who will talk to me on a telephone call for more than 2 minutes. She is a true friend, and her daughter is grown and I've never even met her. What kind of friend am i? Six months its been.

I got pretty despondent for several days here- the crash I really resented, like a final tax that I. don't want to pay.

Up against a wall, cornered by- incapacity. We have to get ourselves uncornered.

So we have to be our own personal wizard.

 

[Rufous McKinney]

Exertion intolerance fits well I think

in theory my diagnosis was SEID- my doctor used that term (did not run tests).

How do I answer diagnosis surveys when SEID isn't listed?

Thats Exertion Intolerance- and yes its on ALL levels and quite accurate. But nobody likes that Term or its defintions either, and its not used much (codes to the same place called- dont' treat them).

 

[Rufous McKinney]

I really have an aversion to this condition having the words fatigue in it

I won't use the term CFS. If somebody says they had that, I might respond with, Oh thats nice you got over it (the story you hear- when others hear vague rumors about you). I might say...or tag- that I have ME, a serious FORM OF CFS. I might mumble- I'm dealing with a neurological disorder-I think thats a really good one actually, as it shuts up comments about chronic fatigue and that they got over it.

But realize the last time anybody asked me, was April 2018. The last time I saw somebody I know standing on their driveway, three driveways down. And I obviously over-shared my woozy state with this person, as otherwise the topic of one's health would never even come up , right? I was close to passing out as I recall, she suggested I take a dance class.

There is nobody around/left who asks.

asked my diagnosis at the pharmacy yesterday, I was busy spelling out Myalgic encephalomyelitis in all its tedious glory. The gal googling it. In this case, she has long COVID and seemed aware she was possibly joining our ranks (she now has thyroid issues).

 

[DomSaxum]

I won't use the term CFS.

Same here!!!

 

[Iknovate]

I got pretty despondent for several days here

Hugs back atcha❤️💕

I do so love all the details everyone shares. The more that is shared, the more I see vast differences in our experiences, and that intrigues me as much as the similarities.

@DomSaxum doesn't see weakness. While I absolutely agree it's not a strength issue, it is a performance issue and yes without energy to perform I consider that a weakness. So maybe some of our differences are just perspectives. Not sure.

In rereading that statement I suddenly see a potential disconnect with the word energy. The world sees the opposite as fatigue, but at a cellular level it's different. Do we have any physicists on board for clarification of terms?

Knowing now what is physically happening, I conversationally insist I have a cellular dysfunction. The exertional term to me, isn't clear enough - as it still falls in line with tiredness. And I believe there are days where I can get improvements from the 'right' exertion (which I also think changes).

We need more power terms. Exertional malaise just seems so victim-laden.

The fact that I have paracites in my cells and the medical profession, especially those specifically trained in infectious diseases, refuses to treat or even talk to me is a travesty.

I feel like I'm being held hostage both politically and medically right now with no weapons at my disposal other than to wait out the siege.

In the meantime, I'm still trying everything I can to fortify my position. My two latest weapons are grounding and a large pot (almost a gallon) of Lemon Balm tea from fresh leaves growing wild in my yard. And on days where my energy and the weather correspond I work on taming my not-yet-garden (only recently finished tackling most of last year's 3+ ft. weeds - now on to this year's seedlings).

I was recently called back to work at our Fitness Center, but through Divine Providence was given an assignment with hardly any demands and very low hours. I'm mentally gearing up for the Senior Movement class I have to start up again June 1st, but I get to redesign it. Who's to say this is all designed for me to truly understand the challenges of aging (which, on this journey, I've learned is a misnomer for failing health)?

Strength today on your journey, whether you're able to make ANY progress either physical, mental or intellectual.

I appreciate being on the journey with at least a few people who can relate and share their experiences that we might figure out what the heck is going on.

 

[DomSaxum]

I conversationally insist I have a cellular dysfunction

Yup! As I've noted before - I've had all the tests; bellows work, plumbing works, but the cells are still not getting/making the energy I need to run on.

 

[DomSaxum]

It is telling that we're not deciding if it should be 20 or 30mgs of the miracle drug, we're still trying to nail down the correct descriptive terminology!
One term I do like . . . drained.

 

[gbells]

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?

CFS was designed by NIH to minimize ME as an illness to discredit disability claims and it hurts patients by delegitimizing them. It is a terrible term. Myalgic Encephalomyelitis is the first and correct name for the condition.

 

[Judee]

Exertion intolerance fits well I think

Something in the back of my mind has always objected to the word "intolerance" though too. It seems to have a negative connotation which also seems to imply a choice when we don't have a choice in this disease.

I mean, just look at all these synonyms for "intolerant:" https://www.thesaurus.com/browse/intolerant

I also think that's why I never liked the acronym SEID either because it also uses the word "intolerant."

I like what Dr. Richard Horowitz has started to call Lyme. He calls it, MSIDS--MSIDS: Multiple Systemic Infectious Disease Syndrome. (Except for the iffy word "Syndrome" everything else in that name says pure physiological disease state.)

MEMD--Myalgic Encephalomyelitis Multi-Systemic Disease???

How about on a more lighthearted tongue-in-cheek idea:

PLHSD--Popeye Lost His Spinach Disease.

I'm joking of course, but maybe we should start a thread like that. Maybe that really would lead to some serious inspirational ideas for a better name and then the whole ME community could vote on the top 5 or something.

We could also borrow from engineering and other fields--maybe some terms that imply low battery or something. Anyway, just a lot of late night troubleshooting. Good night, Everyone.

A furniture store near me needed to change their name because they were evolving into more areas so they told the story of how they originally got started and then had a contest where people suggest a new name for their stores. Of course, the name the picked was IMO really dumb too. (shrug)

 

[Iknovate]

We could also borrow from engineering and other fields--maybe some terms that imply low battery or something.

That's what I'm looking forward to learning more about.

 

[Rufous McKinney]

I mean, just look at all these synonyms for "intolerant:" https://www.thesaurus.com/browse/intolerant

I also think that's why I never liked the acronym SEID either because it also uses the word "intolerant."

your right, this term.....seems more associated with opinions and behaviors. So the term is misapplied.

tolerant is synonymous with terms like:
patient, benevolent, compassionate, broad-minded, broadminded, benign, charitable, sensitive to, receptive, agnostic and lenient.


a thing about acronyms is its best to come up with one you can "say". CFIDS: you can say that as "SEE FIDS". ...you can read a sentence its a word in the sentence, your brain keeps going.

My doctor saying "She has SAD"....for my SEID diagnosis. Stupid. I think I'm going to need special lighting for my seasonal disorder.

so ME has long been a problem due to sounding like the pronoun "me". And saying the whole thing causes people to stare.

now the idea of a term tied to Popeye and his Spinach failed him- nice idea!

 

[Rufous McKinney]

How about on a more lighthearted tongue-in-cheek idea:

PLHSD--Popeye Lost His Spinach Disease.

I can't believe I just found a reference to Popeye consumes a can of mummified spinach from 2500 BC.......

https://popeye.fandom.com/wiki/Spinach?file=Mummified_Spinach_from_2500_BC.png

This Popeye fan page is comprehensive. Never forget Popeye.

 

[Iknovate]

I'm now less concerned with any terminology. We just need help.

In the past months I've had a endocrinologist lecture me on his dismay with 'false' discussions about how Mitochondria contribute to fatigue (to which he blames the internet).

The medical profession at large (allopathic or naturopathic) has been entirely useless to me. And all I want to do is scream when I keep getting reminders in the mail to get mammograms or cervical exams. I am NOT interested in wasting good money testing for something I MIGHT have and really don't care if I die from. I AM concerned with making it through today all the while being ignored for the data I do have (complete exhaustion of my energy allocation for the day taking a shower and inability to EVER get the recommended hours of sleep).

Blame it on a system stuck in flight or fight. I've collapsed my whole life to nothing without improvement.

All the while our numbers of colleagues in this battle grows.

 

[Rufous McKinney]

I am NOT interested in wasting good money testing for something I MIGHT have and really don't care if I die from.

I entirely agree. I"ve got the supposedly great insurance, US version. And yes I"m grateful but still.

They are so "concerned" about my "health" (see handwringing gifs)....while doing nothing about whats wrong here actually. Whats actually wrong is ignored, and they call, so very worried about that mammogram I refuse to get. (I'd have 28 mammograms by now had I listened to them).

My insurer has this program, where they show up at your house. Send a visiting nurse. Who told me: the insurer will never treat your illness.

Isn't that a nice message from the insurer? So I refuse any more of the House Calls....

 

[Rufous McKinney]

In the past months I've had a endocrinologist lecture me on his dismay with 'false' discussions about how Mitochondria contribute to fatigue (to which he blames the internet).

egad. I suppose he is sure its hormones.

edited: because if he was sure its hormones, then he should be able to help fix you, so why do I suspect thats is not the case?

 

[Judee]

In the past months I've had a endocrinologist lecture me on his dismay with 'false' discussions about how Mitochondria contribute to fatigue (to which he blames the internet).

Saw this on a Lyme FB group yesterday:

The medical profession at large (allopathic or naturopathic) has been entirely useless to me. And all I want to do is scream when I keep getting reminders in the mail to get mammograms or cervical exams. I am NOT interested in wasting good money testing for something I MIGHT have and really don't care if I die from. I AM concerned with making it through today all the while being ignored for the data I do have (complete exhaustion of my energy allocation for the day taking a shower and inability to EVER get the recommended hours of sleep).

But I like the way you said it too. They really have no clue.

 

[CSMLSM]

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?

Our metabolism (energy utilisation) is tied to our immune systems.

Think about when you have the flu for example.

You do not feel unwell because of the virus directly, but by the metabolic and immune change to deal with the invader.

Neuro/Immune/Metabolism are all intertwined and a major shift in one naturally will lead to change in the others, why you feel week and tired with the flu.

In ME/CFS the immune system has gone dysfunctional so naturally the neuro and metabolism follow.

Along with any stressful stimuli (physical activity included) stimulating the underlying issue causes this, in my opinion EBV or like viruses in a latent state.

I hope this is easilly assimilated.

Daniel

 

[Long Haul Mono]

I prefer to use ME, but if you expand that acronym you're likely to get blank stares from people, and then be forced to clarify with "Chronic Fatigue Syndrome".
Personally, I think "Neuroendocrine Immune dysfunction" seems a closer fit.