Description of our fatigue

[Desertstorm]

Was at the docs yesterday and am in a deep cycle right now. He asked me to describe the fatigue. All could come up with is that normal fatigue is often a nice feeling, like a good tired similar to an old fashioned light bulbs while this fatigue is like an irritating neon light. A harsh fatigue. Warm light vs cold neon.

Does this make sense to anyone else? He looked confused.

Of course the next thing he said was that his sister has CFS and once she got a divorce it went away...

 

[Wishful]

That is a tough question. Yes, once in a while I do some strenuous physical activity that leaves me with a 'pleasant fatigue'. It is quite different from ME fatigue. I think of the ME fatigue as a lack of mental willpower to do things. I think it's more similar to a drug or toxin that is impairing brain function. It's been many years since I tried Benadryl, but I think it felt somewhat similar to ME fatigue.

Maybe a better analogy is walking with your muscles feeling well-used, while ME is like slogging through sticky mud, maybe with heavily-weighted boots and tight wet pants.

You could also say that ME's fatigue is part of the typical 'sickness behaviour', which I think is true. A doctor might understand that.

 

[jesse's mom]

I have felt like a hot wet blanket was wrapped too tightly for me to breathe correctly, while my muscles and joints feel overused and painful; I look thinking they should be swollen and they look normal. All the while needing to sit down and I already am. It is a bit unreal. There is an anxiety feeling, and when I am really in the ditch it feels like my entire being is trembling. Sometimes my legs don't work, at times I open my mouth to say something and the words come out stilted... like a stroke victim. Then it passes.

My face makes twitching motions that I cannot control, it's embarrassing, I am in my mind just perfectly... I just don't seem like I am.

My belly when I am sick is either moving too fast or too slow. It takes great care with diet and pre and probiotics to get that aspect of my body.

On a busy day, a hard day I lay down to rest and I twitch and glitch until I fall asleep.

It feels like my body now has a mind of its own, in the land of uncomfortable.

 

[Heartl]

I have felt like a hot wet blanket was wrapped too tightly for me to breathe correctly, while my muscles and joints feel overused and painful; I look thinking they should be swollen and they look normal. All the while needing to sit down and I already am. It is a bit unreal. There is an anxiety feeling, and when I am really in the ditch it feels like my entire being is trembling. Sometimes my legs don't work, at times I open my mouth to say something and the words come out stilted... like a stroke victim. Then it passes.

My face makes twitching motions that I cannot control, it's embarrassing, I am in my mind just perfectly... I just don't seem like I am.

My belly when I am sick is either moving too fast or too slow. It takes great care with diet and pre and probiotics to get that aspect of my body.

On a busy day, a hard day I lay down to rest and I twitch and glitch until I fall asleep.

It feels like my body now has a mind of its own, in the land of uncomfortable.

Yes!!!! Same!

 

[toyfoof]

I really struggle trying to describe our fatigue. My boyfriend was sincerely trying to understand recently and we came to the conclusion that he has never experienced what I have, and will never be able to 100% understand.

I feel like my cells are made of super-thin paper, and filled with air. Just useless. Meanwhile, there are weights attached to them, pulling me down and creating pain.

 

[Dechi]

I would say it’s kind of like having to carry a heavy load on your shoulders, while feeling shaky and dizzy. And having a mushy brain.

 

[Hufsamor]

I usually answer it's like having the flu..
It's something they can relate to

 

[Mel9]

The

I usually answer it's like having the flu..
It's something they can relate to

The worst flu you have ever had
And it never gets better

 

[percyval577]

Sometimes I think trying to describe how it feels might be more unwise or social dangerous than trying to describe how you are hindered to act with the risk of mistakes (regardless of the feeling that is of course involved).

When I triy to describe how it feels people look at me and think "He needs a psychologists."
If I speak to doctors they think: "We havn´t figured out yet what for a strange conflict it is, but somebody who is telling so cannot be taken serious." And they might say "Mmh." ...
I think this problem occurs easier when you are able to move around and can talk normal (for a while ...)
People then don´t need to pay attention that it has developed after a physiological impact,
and they don´t need to pay attention that you say it´s horrible.
The problem is also that we are all different by personality, genetics and history of illness. Mmh.

A better chance might be to try to describe how it hinders you to act.
because it might come to their mind that the brain is hugly complex and hard to get acces to.
I like to compare it with riding a bike on a beach in the sand whereas normal people ride on asphalt.
Or there is something like in cars, when the drivers would steer 5cm to one direction
but the cars drive 50cm in the direction and crash each into another.
Well, I cannot say that I managed to have success so far ...

 

[Likaloha]

It is so hard to describe.. It seems so many who do not understand say things like I get sooo tired too, etc.. This could not be further from what I feel.. It is true i sometimes feel like I have the flu all the time, but even that does not describe the overwhelming feeling of hurting everywhere all the time, sometimes worse in other places, but feel like something is pressing down on me, dragging me.. It is so hard to describe in words. I often say it feels i am to tired to talk, to think, to be present.. I want so badly for the opposite, but know this is and has been my life for almost 15 years.. I am lucky though as I have a living and caring spouse and family. I am unsure what I would be without them.. Have the best day you possibly can.. Lisa

 

[Stretched]

I showed my doctor the picture of the girl with a banner:
You haven’t slept in 3 days...
You have the flu...
You’ve just run 5 miles...
And you have a hangover... . How do you feel?
Like someone with CFS!
-Seems right to me.

 

[Stretched]

Was at the docs yesterday and am in a deep cycle right now. He asked me to describe the fatigue...

Of course the next thing he said was that his sister has CFS and once she got a divorce it went away...

That last sentence sounds cynical and dismissive. Maybe get a comeback line, e.g. ‘then she didn’t have what I have, otherwise she would be very sick or bed bound!’

 

[Wolfcub]

I don't get this all the time. I am lucky. Mine remits and relapses, and sometimes I get quite long remissions.

But my "fatigue" (for want of a better word!) Is nothing LIKE normal fatigue or tiredness.
It's not even like that extreme tiredness I'd get when I hadn't slept one wink for two days.

It is like an utter and complete physical exhaustion. The nearest thing I have in my memory-bank was when I did three mountains in one day (back in the old days of course!) Plus was recovering from 2nd stage hypothermia that night, plus had not eaten enough.
So exhausted you feel literally sick to your stomach, a bit faint, and a constant vibration inside at core level in the body, like something stretched out to its limits, while heart rate is faster as if to try to keep the body going at all costs.
So that even mental focus on something you normally love, is extremely difficult and conversation extremely hard.

Boy....it is quite difficult to describe. Like trying to describe the colour "blue".

 

[jesse's mom]

Boy....it is quite difficult to describe. Like trying to describe the colour "blue".

It is much like trying to describe something to a blind person.

 

[Wolfcub]

That last sentence sounds cynical and dismissive. Maybe get a comeback line, e.g. ‘then she didn’t have what I have, otherwise she would be very sick or bed bound!’

@Stretched @Desertstorm yes, what that doctor said is loaded....with "psychosomatic illness" overtones. He obviously is lacking in knowledge and experience of ME/CFS.

Good comeback line, Stretched!

 

[taniaaust1]

"Warm light vs cold neon."

that description even confuses me and would confuse most doctors.

...........................

Better to try to give them something they can relate too. I like using the exhaustion/fatigue one feels when one is sick in bed with a severe virus or flu but worst then that, I will add ...as I can lay in bed but be too exhausted/fatiged to go and get myself a drink and almost pee myself as I'm feeling too exhausted to get up and go to the loo so will hold on till I'm in bladder pain (in my case I have actually peed myself with being too exhausted to get up) or "too exhausted to get up and get food though I'm hungry so missing meals".

Try to really explain it in a clear way so they are not trying to "guess" what the exhaustion is like, the depth of it... so add examples of how you are affected. ("I'm upset as I had to leave my sports team, I can not play sports any more as I'm too fatigued".. or whatever.)

Giving examples also makes it harder for a doctor to give a come back of "my sister was like that"

 

[Desertstorm]

Well given sufferers can’t even come up with a common discription for the fatigue it says it all about this shit. Seeing the doc in the am and still cycling downward hard. Hope I can pull out of this dive, very much like flying a jet in a steep dive except I always felt in control in the air... not at all now. That’s life.

 

[Desertstorm]

Saw a VA doc yesterday who has seen others with CFS while working at mayo and was great. She understood what I meant about good tired but said she could not relate to our insisent fatigue but had seen enough folks to know it is real and debilitating. So it’s back to neurology again at her behest.

Thursday I had port put in my chest and the doc took ten minutes to ask about GWI and CFS. Then I saw my wound care doc who spent Twenty minutes doing the same and said he had spent two hours looking at my records on the previous Sunday before bringing my case up at their hospital wide doc meeting. He presented my case because I had been admitted twice in the previous month and he felt they all needed to get on the same page in terms of coordinating my care and understanding Me/CFS. Now this is the major hospital that serves much of SW Montana here in the US. They decided to put the CDC and VA info on ME/CFS and Gulf War Illness into my records and flagged it for any docs I see if taken into the ER again. They also agreed to listen to me or my wife when explaining my orthostatic black outs and the various symptoms. Bacicly the idea is to not have each doc reinvent the wheel, but rather treat my symptoms and not fall
Back on preconceived notions.

Anyway I am thrilled as can be as I know of three other local veterans from the desert who suffer from this shit too!who will benefit from this. When I used to come out of the fog in the ER in pain and confused too many times I was dismissed as looking for drugs or simply crazy. I refuse any narcotics or sedation at all costs. Even had them incert my port the other day without any pain killers. Not to sound like a creepy sort but as I told them, I sort of like to feel different pain because it makes me feel alive...sort of like they song Hurt. Anything but myalgia, anything but the normal.

Sorry to blabber on. Head fog, pain and happy. One out of three ain’t bad!

 

[Judee]

Most of the time the fatigue feels like times when I've had all the wind knocked out of me leaving me feeling faint and uncomfortably tingly.

However sometimes, like today, it takes on an added dimension and feels like I'm also carrying around leaded clothing like the x-ray capes the dental technicians drape over my torso when taking an x-ray of my teeth.