Article: Chronic Fatigue Sydrome: 10 Things People Misunderstand About This "Fatigue"

You can view the page at http://www.forums.aboutmecfs.org/content.php?233-Chronic-Fatigue-Sydrome-10-Things-People-Misunderstand-About-This-quot-Fatigue-quot

 

Awesome article Jody. I can't wait until the pathology is nailed down and we can explain what's going on in purely biological terms rather than subjective. Hopefully at that point we won't really be needing to convince many people how sick we are anyway.

 

As always such an evocative piece Jody! At some point they will figure out this thing.

 

Great article, Jody!

Actually, I recognise the "face numb" thing - if I ever severely overdid it, my lips and the area around them would go numb. What is that? Did I read somewhere that it's a neurological symptom? It was a sign that I was really in trouble.

 

Aside from all the strength sapping symptoms Jody mentioned, its the social isolation that can build up even between those who are closest to you that hurts as well.

For some, even being in the same room with other people can be overwhelming and draining, without necessarilly speaking or engaging socially.

This is usually the last thing we want, but its hard for people to understand the dynamics of the illness and the varying symptoms that we are prone to.

The strain this can put on those closest to us and the demands it can put on their patience is something we should all remember with gratitude.

 

Awesome article Jody. I can't wait until the pathology is nailed down and we can explain what's going on in purely biological terms rather than subjective. Hopefully at that point we won't really be needing to convince many people how sick we are anyway.

Me too, Christopher.

Looking forward to it.

 

As always such an evocative piece Jody! At some point they will figure out this thing.

Yeah they will. Eventually they will.

But then ... what will I have to write about?

 

Great article, Jody!

Actually, I recognise the "face numb" thing - if I ever severely overdid it, my lips and the area around them would go numb. What is that? Did I read somewhere that it's a neurological symptom? It was a sign that I was really in trouble.

That was always one of my big warning signs too. Thankfully it doesn't happen very often anymore. But, even though I am doing alot better most of the time it is still possible for me to overdo it and get symptoms just like the old days.

Numb face can be from neurological stuff or it could also be from blood perfusion. If blood volume is low the body tries to determine where it can safely diminish blood flow to. Brain and heart are vital, extremities and a few other areas not so much, so the numbness and tingling and vibrating that I'll get in my hands and lower arms for instance may well be from that. Don't know.

This type of symptom usually indicates it's a good time to lie down and tune out. Read or sleep or something. And drink some water in case it's low blood volume.

 

Aside from all the strength sapping symptoms Jody mentioned, its the social isolation that can build up even between those who are closest to you that hurts as well.

For some, even being in the same room with other people can be overwhelming and draining, without necessarilly speaking or engaging socially.

This is usually the last thing we want, but its hard for people to understand the dynamics of the illness and the varying symptoms that we are prone to.

The strain this can put on those closest to us and the demands it can put on their patience is something we should all remember with gratitude.

liverock,

This is so true. Hard for them, and us, to accept. But it is the way it is.

Those of us with people in our lives willing to put up with this puzzling type of stuff are very fortunate.

 

That was always one of my big warning signs too. Thankfully it doesn't happen very often anymore. But, even though I am doing alot better most of the time it is still possible for me to overdo it and get symptoms just like the old days.

Numb face can be from neurological stuff or it could also be from blood perfusion. If blood volume is low the body tries to determine where it can safely diminish blood flow to. Brain and heart are vital, extremities and a few other areas not so much...

Interesting! I guess my brain realised I wouldn't need to do any emergency kissing! Or whistling!

 

Oh my, this is excellent. Having partially recovered after 12 years of 'CFS', I was thinking about the difference between 'tired' and 'having a crash' CFS style. I haven't slept for two days (insomnia seems to be an ongoing CFS issue for me), BUT even then I am NOWHERE near as exhuasted as I used to be after weeks of good rest. Amazing. Today I can go for a walk, even without the sleep and sure I feel dreadful, but I feel like I'm still in my body, I still feel like me.

CFS is so deeply exhausting it takes away one's sense of self. It's like you've turned into a colander and all of your energy has drained away.

 

Thank you, Jody.

Your articles should be required reading for family and friends of ME/CFS patients and for doctors, scientists, and government officials whose expertise might help if only they understood the seriousness of the illness.

 

Thanks Merry.

Ya just never know what is going to hit it for other people I guess.

The only reason this article got written was because I had a deadline and needed to turn something in. The topic I'd picked up fatigue, which had seemed like such a great choice earlier in the week, wasn't looking so good.

I felt like I'd said it all before. I felt like this was all so obvious, it was insulting to readers to put it before them and try to con them into reading it.

Glad I had a deadline after all.

 

Oh my, this is excellent. Having partially recovered after 12 years of 'CFS', I was thinking about the difference between 'tired' and 'having a crash' CFS style. I haven't slept for two days (insomnia seems to be an ongoing CFS issue for me), BUT even then I am NOWHERE near as exhuasted as I used to be after weeks of good rest. Amazing. Today I can go for a walk, even without the sleep and sure I feel dreadful, but I feel like I'm still in my body, I still feel like me.

CFS is so deeply exhausting it takes away one's sense of self. It's like you've turned into a colander and all of your energy has drained away.

Hi Nermalina,

It is like that. People who've never experienced this distortion of fatigue can't begin to imagine what it's like, let alone spending years like this.

 

Jody

I love your mind........................




And your ability to put my thoughts into words.

Fondly, June

 

I love your mind.................... And your ability to put my thoughts into words.

ME TOO! You said it IntuneJune, and I agree completely.

Jody, you definitely have a way with words, and I am so grateful for your articles. Gonna save this one for sure.

The text, of each great point after the next, would actually flow well in a video...

 

Good piece jody

 

I love your mind........................




And your ability to put my thoughts into words.

Fondly, June

June,

I love that that happens too. :Retro smile:

 

ME TOO! You said it IntuneJune, and I agree completely.

Jody, you definitely have a way with words, and I am so grateful for your articles. Gonna save this one for sure.

The text, of each great point after the next, would actually flow well in a video...

So we are a good collaborative team, is that what you are saying, db?

 

Good piece jody

Thanks Frank.

Thanks for writing.:Retro smile: