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ICC symptom: Malaise

Boule de feu

Senior Member
Messages
1,118
Location
Ottawa, Canada
In French, a "malaise" is a discomfort. The English dictionary uses the term "mild sickness".

I was wondering if everyone feels just "a little bit" sick while having a post-exertional malaise.

My episodes are pretty brutal and I would not say that I have a MILD sickness when it happens. To the contrary, I am ususally in bed with my head in the garbage can, not able to make it to the washroom. The migraines are so horrible. Sometimes, I wish I could just throw up. I would probably get better faster.

How would you describe your PEM?
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
No, I feel very sick when I get PEM. I don't experience it as often as I have in the past. I try to listen to my body and get my rest, but sometimes I'm not smart about it!

GG

PS Sorry you have it so bad, my CFS is not as bad as yours, that's my impression. I am doing what I can to help all my fellow sufferers! I am very active online and donate money monthly.
 

Boule de feu

Senior Member
Messages
1,118
Location
Ottawa, Canada
No, I feel very sick when I get PEM. I don't experience it as often as I have in the past. I try to listen to my body and get my rest, but sometimes I'm not smart about it!

GG

PS Sorry you have it so bad, my CFS is not as bad as yours, that's my impression. I am doing what I can to help all my fellow sufferers! I am very active online and donate money monthly.

Thank you for your response. I know mine is triggered every time I overdo it. I get a very specific burning pain in my upper neck (spine area) and the nausea starts. It is also happening when i'm exposed to chemicals. The other day, my husband and I got stuck in traffic and some city workers were doing the asphalt. The smell was so bad! I got very sick the next morning. It lasted three days. Sometimes, it's perfume. Sometimes, it's not having a nap. It can be anything or nothing.

Why do they use the word malaise if it's that bad?
 
Messages
2,565
Location
US
If I have limited my activities greatly, then it's just "malaise".

I think in general use the word is not used seriously. I don't know how to explain this well. Maybe it's just me but in other contexts I got the sense it was almost like boredom, apathy, depression, like a label when they thought it was all in your head. Hopefully in medical circles they don't feel that way.
 

Boule de feu

Senior Member
Messages
1,118
Location
Ottawa, Canada
If I have limited my activities greatly, then it's just "malaise".

I think in general use the word is not used seriously. I don't know how to explain this well. Maybe it's just me but in other contexts I got the sense it was almost like boredom, apathy, depression, like a label when they thought it was all in your head. Hopefully in medical circles they don't feel that way.

Now that you are saying it, it does have a "hysteria" bell to it...
 

mellster

Marco
Messages
805
Location
San Francisco
I don't think this was chosen with malintent but rather to generalize as everybody's PEM symptoms can be very similar, but also very different. But it has been replaced with PENE anyways and exhaustion is prob a tad stronger.
 

Boule de feu

Senior Member
Messages
1,118
Location
Ottawa, Canada
I don't think this was chosen with malintent but rather to generalize as everybody's PEM symptoms can be very similar, but also very different. But it has been replaced with PENE anyways and exhaustion is prob a tad stronger.

For me, it's exhaustion that is so severe that I feel like I have been poisoned.
I can't move a finger when i'm like that. I can feel each cell of my body and they are all screaming for help.
I'm not exaggerating. It's exactly that. Each time it happens, i'm afraid that I will not get better and I have to
convince myself that it won't last. Otherwise, I would get in a panic mode and it would not be pretty.
When I have an episode like this, I go in what I call my surviving mode.
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
Hi Boule, I typically have bad migraine attacks, stiff neck, and neck pain as part of the PEM. That's in addition to the extreme exhaustion, lack of appetite, and maybe insomnia as well. Or sometimes I can't stay awake instead. Somedays I can barely get to the toilet. Sometimes the migraines last three days non-stop. That is really hard to take, and suicide starts looking like a pretty good method of pain relief.

I was fighting with the doctor today. We fired each other. It was bad. I know I will be extremely sick tomorrow, and probably the next day too. But according to the doctor I just need psychotherapy and exercise. It's a wonder people with our illness don't go 'postal' in the face of such abuse.

My understanding of the word 'malaise' is that it refers to a non-specific feeling of illness, as in 'feeling sick all over'. Except for my head and neck, I don't have much pain, I find it hard to describe just how I feel, so for me 'malaise' works OK. I tell people it's like waking up with a hangover every day. They can usually relate to that!
 

Boule de feu

Senior Member
Messages
1,118
Location
Ottawa, Canada
Hi Boule, I typically have bad migraine attacks, stiff neck, and neck pain as part of the PEM. That's in addition to the extreme exhaustion, lack of appetite, and maybe insomnia as well. Or sometimes I can't stay awake instead. Somedays I can barely get to the toilet. Sometimes the migraines last three days non-stop. That is really hard to take, and suicide starts looking like a pretty good method of pain relief.

I was fighting with the doctor today. We fired each other. It was bad. I know I will be extremely sick tomorrow, and probably the next day too. But according to the doctor I just need psychotherapy and exercise. It's a wonder people with our illness don't go 'postal' in the face of such abuse.

My understanding of the word 'malaise' is that it refers to a non-specific feeling of illness, as in 'feeling sick all over'. Except for my head and neck, I don't have much pain, I find it hard to describe just how I feel, so for me 'malaise' works OK. I tell people it's like waking up with a hangover every day. They can usually relate to that!

Sorry to hear that. Stress definitely makes us sicker. We don't need that, for sure.

My PEM is not like a hangover but more like very severe flu. I do have the stiff neck and burning sensation in my spine. I would say it's more like inflammation. I feel that if I eat more, I feel a bit better but it does not last.
Do you get them often?
 

mellster

Marco
Messages
805
Location
San Francisco
I didn't imply that some are overstating their malaise, to the contrary. But just looking at the last posts shows how difficult it is to agree on common symptoms, even for PEM/PENE and if I listed mine now they would be different again, but definitely inflammation-driven (and eating helps, yes, if the IBS doesn't interfere). I think malaise is a decent term though definitely not severe enough, and exhaustion does not address people who mainly get chronic pain while in PENE/PEM state. Feeling like shit still sums it up best, but it's not a medical term ;)
 

Boule de feu

Senior Member
Messages
1,118
Location
Ottawa, Canada
I didn't imply that some are overstating thier malaise, to the contrary. But just looking at the last posts shows how difficult it is to agree on common symptoms, even for PEM/PENE and if I listed mine now they would be different again, but definitely inflammation-driven (and eating helps, yes, if the IBS doesn't interfere). I think malaise is a decent term though definitely not severe enough, and exhaustion does not address people who mainly get chronic pain while in PENE/PEM state. Feeling like shit still sums it up best, but it's not a medical term ;)

It's feeling like shit, all right but X 3 !!! LOL