Fatigue May Be the Wrong Term

[TexRob]

Yes, sometimes when I do a few hours of heavy labour, I realize that "This is what healthy fatigue feels like!" and that it's different from ME's "fatigue-like symptom". It's hard to describe the difference, but the difference is noticeable when directly compared.

... also, the 'healthy fatigue' goes away after resting. ME's doesn't.

Hah, I was taking a cold shower yesterday and remember thinking, "Oh, pain can be nice when you have the energy for it" it's kind of like that. Using up your energy when you are healthy, feels great, not so much when you feel bad.

 

[Anchoress]

As long as it works that is fine by me..

 

[Kailyn]

I know my husband struggles with the word fatigue, going back to the original post of this thread. He is very severe, but still doesn't feel like "fatigue" is his primary symptom. Often enough, he feels uncomfortably wired, but can crash from simply hearing voices, being touched, the room being too cold... PEM is really his #1 symptom, not fatigue, and I had to create a unique name for what he was experiencing, it might be "Extremely Mis-wired Flu Response"

 

[Artemisia]

Wrong term, unless you knew that you were unable to lift what you used to be able to. Inability to lift it as frequently as before would be poor endurance. If someone with ME wanted to report that, they should do an exercise routine (preferably witnessed and documented) that shows that the expected improvement in endurance failed to occur, and that PEM resulted instead.

When I talked to a doctor about my symptoms, I avoided the terms "fatigue" or "tired". My ME didn't cause any physical limitations (strength or endurance), so that never came up. Yes, terminology is important. Doctors wanting an 'easy out' may take advantage of any misleading terminology.

This is so important, especially for people who might need to apply for disability. If you ever feel like expanding on the best terminology to use around doctors for them to take us seriously (and to get disability)--either here or in another thread, I'd appreciate it greatly. No pressure if you're not up to it though!

 

[Artemisia]

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.

Yes I also have tried using ME and then end up coming round to dreadful CFS when is then reduced in their minds to "chronic fatigue"... which everyone has. Eyeroll.
I think in casual settings, saying a vague, 'it's a neurological condition similar to MS' might work, when the goal is to be taken seriously. Even though it's not especially accurate. No one really listens anyway, and I need casual acquaintances like neighbors or whatnot to understand it's debilitating.

 

[Emmarose47]

Whatever works the best hey..
My neighbours have got gossipy and 1 abusive.. They think I'm strange...
Upsetting
But yep m. E cfs is strange

 

[Dysfunkion]

Hah, I was taking a cold shower yesterday and remember thinking, "Oh, pain can be nice when you have the energy for it" it's kind of like that. Using up your energy when you are healthy, feels great, not so much when you feel bad.

I had enough energy to go outside yesterday and felt this same thing. "Wow this is what healthy exhaustion feels like!". This is all thanks to propolis which I'll continue taking as whatever it is doing is a miracle for my inflammation and brain fog. Still very low at baseline energy but I also have other things going on in my situation too where I think dopamine, opioid, and possibly other receptors need to regenerate and the only thing that's going to help is time. I have started enjoying music and other things more fully again with more sensory clarity though doing what I am now so I must be doing something right.

Yes I also have tried using ME and then end up coming round to dreadful CFS when is then reduced in their minds to "chronic fatigue"... which everyone has. Eyeroll.
I think in casual settings, saying a vague, 'it's a neurological condition similar to MS' might work, when the goal is to be taken seriously. Even though it's not especially accurate. No one really listens anyway, and I need casual acquaintances like neighbors or whatnot to understand it's debilitating.

I try to be accurate in the case it does come up but yeah people just can't wrap their minds around it because they are still seeing it as like just being tired from a hard day at work perpetually. There is a clear distinction with me between exhausted and this. I'd describe it like my brain can't even really get to the starting point energetically, something isn't getting enough juice in there that causes a ton of downstream problems.

Whatever works the best hey..
My neighbours have got gossipy and 1 abusive.. They think I'm strange...
Upsetting
But yep m. E cfs is strange

Ugh can relate, I'm sorry! I live in a smaller community where everyone at least in some vague way knows everyone else that commonly shows up anywhere around here and people can be ruthless. They will not even have ever interacted with you and already formed a complete picture of you that will not budge no matter what. I am also surrounded by abusive losers in a complex family situation where I can only really keep my head down. Sometimes they pull this thing where they're kind of nice to me and try to get me to open up more to them but having been there before I know it's a trap so I keep things vague friendly with them. But then when I don't interact much they talk behind my back and try to stir the pot more. What helps me deal with things there is realizing it's all abuser mind games, they're going to use your illness against you no matter what you do and letting them know more only gives them more ammo. There's no easy way out and sometimes you can only just protect yourself as you keep moving forward. I know what I gotta do and what's good for me, that's all that matters as long as I keep myself safe and with people I do trust. Living in a situation like that itself puts a ridiculous amount of stress into the situation, I often find myself stuck in fight or flight because of it never mind the ordinary stress in life from my job or other personal things for example. It adds a whole new dimension to your problems of "But how will they react to me doing this or that for myself?". Now that is truly exhausting.

Sometimes my outer presentation self care really slips because I A. am just focused on surviving some weeks and B. Don't have the money to throw around always keep that up as thoroughly. It seems like on the health front some things are improving so I can focus more on my appearance and social presentation but right now everything is just as mess and there is a lot of uncertainty.

 

[Long Haul Mono]

Ugh can relate, I'm sorry! I live in a smaller community where everyone at least in some vague way knows everyone else that commonly shows up anywhere around here and people can be ruthless. They will not even have ever interacted with you and already formed a complete picture of you that will not budge no matter what. I am also surrounded by abusive losers in a complex family situation where I can only really keep my head down. Sometimes they pull this thing where they're kind of nice to me and try to get me to open up more to them but having been there before I know it's a trap so I keep things vague friendly with them. But then when I don't interact much they talk behind my back and try to stir the pot more. What helps me deal with things there is realizing it's all abuser mind games, they're going to use your illness against you no matter what you do and letting them know more only gives them more ammo. There's no easy way out and sometimes you can only just protect yourself as you keep moving forward. I know what I gotta do and what's good for me, that's all that matters as long as I keep myself safe and with people I do trust. Living in a situation like that itself puts a ridiculous amount of stress into the situation, I often find myself stuck in fight or flight because of it never mind the ordinary stress in life from my job or other personal things for example. It adds a whole new dimension to your problems of "But how will they react to me doing this or that for myself?". Now that is truly exhausting.

As a side-note, here's a video about another acronym (CIRS) you could potentially fit with all the others, ie ME/CFS, CFIDS, MCAS, etc, etc... Lots of acronyms but no real advancement in medical research/understanding of this disease, and considering how things went in the last few years, I'm not really surprised anymore.

I think setting up your own personal boundaries is paramount with this disease. It has to be one of the weirdest diseases (in a cruel way), where people mock and ridicule you for it, and worse still, when their presumption takes over their rational capability they turn their half-baked suppositions into "facts" and attack you with them. It can get particularly nasty when their "facts" condemn you to nothing more than a mental health issue. I think their lack of compassion and understanding is the real mental health issue here.

The best way I believe it can be handled is to send links of online educational content to those who may want you to "open up more". Basically, my stance may seem rude to some, but I'll just tell people to find out about it themselves. I'm done trying to reach presumptuous, irrational people.

 

[Emmarose47]

Thanks for sharing both helps me feel not so alone in these issues.
To be misunderstood is one thing to then have mistreatment and discrimation is quite another and it's such a factor for so many of us.
I moved to what I thought was a sweet over 50s community 1 Yr ago. It's government subsidised and whilst I'm grateful to get 'a property for life'in this crazy housing crisis. I certainly am faced with a microscopic experience of humanities finest, drug addiction, mental health and well personality disordered vileness.
Can certainly see how wars start many humans can be so incredibly beautiful and so many incredibly ugly and brutal.
I'm most definitely learning hard lessons in survival, boundaries and self care. I'm, well I was a naturally friendly, warm person and being here has knocked that out of me. Housebound and limited to outdoor time is not a place of 'normalicy'.
When I moved here I tried so hard to fit in and to 'help' people understand printed off information and gave to some of my neighbours. Yep it made limited difference. But I need to remember I'm only dealing with one prevalent nasty person who is in essence having a narcassistic tantrum because boundaries and lack of attention are at play. For me it's now about nil interaction and when I'm on bedrest earplugs in. Focus on my own healing and self care... We deserve that and let's face it it's the only way to survive.

 

[Dysfunkion]

I get it, it's logical to be that way. I've also found often educating people isn't worth it outside of like you said giving them an information pamphlet, giving them a quick overview, and letting them learn if they want. Personally I've at least for health conditions in my area haven't seen anyone do this before but if someone did on something I'm unfamiliar with I'd actually really appreciate it and even look into it later out of curiosity if it doesn't personally have any connections to my life. Most people I know aren't very curious creatures.

I also don't like being so jaded but I've as I continued to navigate it and advocate for myself when very little else would have become a much stronger person. I think I balance things pretty well though, I can very easily depending on the person switch between closed and open easily. Maybe I can actually thank the constant people interaction in retail for that. I just have so much time every week that I can spend interacting with random people and analyzing human behavior that I think I have a decent "person I'd rather stay away from"-dar. I actually like random interactions when I'm out given they're positive one's. I'm also lucky I have a forest right outside my place and can easily just get out on my own for a while and maybe at most even in the summer see a few people go by in there. I hate going anywhere else though cause that tends to mean if it's not to one store on the outside of town that means I'm going downtown where things are worse than they ever were these days. Not as ease walking down there as I used to be years ago.

 

[Emmarose47]

Ye info sharing is good... People have so much of it re info overload... I have a vested interest.
I used to be a mental health nurse and came with that over empathic, warm friendly caretaking role personality.. My goodness mod severe M.e has and is knocking that right out of me. The people about are giving me a brutal life lesson in 'toughen up buttercup'.. Its good I need it as I deepen my relationship with self and healing..

 

[SickOfSickness]

Sorry you're dealing with those neighbors!

 

[Galixie]

I came across an obsolete word on social media a few weeks ago that had me thinking; If I use this term instead of "fatigue" when talking to a doctor, they will be immediately clued in to the fact that they have no idea what I'm talking about. Which, at this point, feels like the first hurdle in the conversation, because so many doctors equate fatigue with "tired" without grasping that it's not the same thing at all.

This is what I came accross:
Obsolete word of the day challenge
The word of the day is QUANKED.
Listed in “A Glossary of Words Used in the County of Wiltshire,” by Dartnell and Goddard (1893), it means “overpowered by fatigue.”

The fact that I have ME/CFS isn't even brought up at doctor appointments. I can't tell if they're just in denial or what. I had a well-meaning doctor try to convince me last week that I need to walk for 20 minutes a day. I countered with the fact that her suggestion is impossible until the fatigue is treated. She has a probably-wrong theory on why I'm fatigued that has nothing to do with ME/CFS. It also seems like doctors never have the time to listen when you try to tell them that washing a few dishes is exhausting and that a trip to buy groceries causes PEM. A couple of years ago, I could do tai chi. I can't even do that now.

Also, there is the real problem of distance. Going for a walk means knowing how far you can go and still be able to get back. I was just having a conversation about this with a fibromyalgia friend of mine a few days ago. He has been trying to go for walks, but the distance he can go varies. It sometimes results in dehydration or muscle problems. He thinks, with enough practice, he'll eventually be able to gauge the distance he can go safely. I suffer no delusion that that I'd ever get to a point where I'd know how far I can safely go. It's just too variable. I don't think doctors ever even consider the distance problem when they make their suggestions.

 

[Wishful]

Going for a walk means knowing how far you can go and still be able to get back.

That's a tricky one. It's really difficult to judge when you reach your "halfway to exhausted" point, even when you don't have a disease with unpredictable changes.

Warning: when hiking in the woods and you get tired, do not choose what you think is a shortcut back. Those shortcuts may have bogs, cliffs, or other unexpected barriers. I keep running into soggy areas too deep to cross.

 

[Blazer95]

I have been really lucky that most of my close family members and friends have accepted the ME/CFS diagnosis without much doubting, wich has been really helpful and I of course thank god for having such a good network of people surrounding me. Dont worry, I don't take it for granted.

However the term fatigue has been causing most of troubles. I often get the feedback that fatigue would mean I am just really really (pathologically) tired most likely they try to connect the cfs term to the known illness narkolepsy.

I always try to describe it like this: I am not tired at all, if I would lay down I am wide awake and could not sleep. I am however, very exhausted and have little to no tolerance on phyiscal activity wich worsens my wellbeing quite rapidly. My emotional and mental tolerance is quite high compared to my physical intolerance but I have crashed on emotional stress before so I do know its possible for me.

Something like chronic exertion intolerance or chronic physical exhaustion would suit it better but its hard to describe this illness correctly, even when people actually try to listen to you.

 

[ruben]

In my experience, first and foremost I am sick/ill of which tiredness is but one symptom. Sorry if I'm repeating myself.

 

[Long Haul Mono]

The word of the day is QUANKED.
Listed in “A Glossary of Words Used in the County of Wiltshire,” by Dartnell and Goddard (1893), it means “overpowered by fatigue.”

I'd use the term just for the cheap laughs, watching the response on other people's faces when I tell them "I'm totally quanked".

 

[Florida Guy]

I agree that fatigue should not be the definition of me/cfs. I only get fatigued when I have pushed myself too far and fatigue seems to be part of pem though not always. If I'm sitting in my chair like now, I feel fine. If I do some minor activity, go to the kitchen, lets say, I feel fine. Its just when I over do it.

There is another name, I think it was seid which means severe exercise intolerance disease. That makes more sense because most of us, based on my reading, are not fatigued all day. Just when they are doing something or are having pem.

It also trivializes the disease since fatigue is a common thing that people get over. It makes it sound like no big deal. People think "rest up and get some exercise" but that doesnt work. When you explain its exercise and exertion intolerance, they take it more seriously. Myalgic encephalomyalitis (did I spell it right?) also seems like a better name for it. But I've seen posts where its claimed to be different from cfs.

Today I am not quanked

 

[Jyoti]

People think "rest up and get some exercise" but that doesnt work.

Some of us have Garmin watches with Body Battery monitoring. My (healthy but somewhat frail) daughter recently gt ot a Garmin and it is amazing to see her BB drop and then rise. She can go from 100 at the beginning of the day to 10 at night and back to 100 by morning. I think that is how it is supposed to work!

I am sure others who use the Garmin and rely on the BB can comment, but for me, I do something (or almost nothing) and the BB drops. Energy is expended. Sometimes it rises smartly when I rest, but in general, my BB will rise about 30 points over the course of ten hours in bed. It is easy to see how we can get into energy deficits. And of course there are times when my BB actually goes down while I am asleep or resting, when my heart rate is too high to allow for replenishment.

In any case, I find this a helpful device for showing others why it is I have to avoid a lot of exertion.

When you explain its exercise and exertion intolerance, they take it more seriously.

And showing them works even better!

 

[Florida Guy]

@Jyoti that is very interesting. I never heard of a body battery before. I will have to look into it. I wonder how it works?