Chronic Fatigue Syndrome (ME/CFS) Symptoms

[MEKoan]

I find the symptom page very problematic.

Contrary to popular opinion, "fatigue" is not the cardinal symptom. Nor would I put sleep problems second on the list. Also, thermostatic instability was listed with, I think, muscle problems.

I'm terribly muddle headed right now and cannot adequately address the issues I have with this page but they are serious enough to cause me to question involvement on this forum.

I hate to be so critical right from the jump but a clear understanding of the symptoms experienced by people with ME (aka CFIDS/CFS) is critical to understanding the illness.

Thanks for your time,
Koan

 

[Frickly]

Koan,

I am not the person that should be addressing your question but am curious what symptom page you are talking about? Where can I find this page?

 

[Cort]

Hi Koan - are you referring to a specific page that lists the different symptoms or the symptom forums; sleep/pain management/other symptoms?

 

[MEKoan]

Hi Frickly & Cort

I'm talking about this: http://aboutmecfs.org/Basics/MECFSymptoms.aspx

Thank you for taking the time to address my concerns. I appreciate that I am just a visitor here and that you may have a different take. We are all entitled to have a finely nuanced understanding of ME and/or CFIDS and/or CFS. AKA: MAD - Multiple Acronym Disease.

I've been wandering around trying to figure out how to set things up so that I am notified when someone responds to a thread I've started or responded to, and to notify me when I get a PM but my brain is offline and I can't figure it out so please forgive me if I seem laggardly when responding.

See: "Laggardly". I can't think of a less ridiculous and archaic word to use in that incredibly awkward run-on sentence than: laggardly!

I should just be quiet until the synapses can make connections!

Thanks again for your interest in my concerns.

Peace,
Koan

 

[Jody]

LOL, Koan.

You may not think you're doing too well here, but you really are. And with some wit as well, tough to do when you're feeling ... laggardly.

All these things will get sorted out in time.

Just wanted to pop in here and give you some reassurance before I go take a look at the link you posted.

 

[Jody]

Koan,

That is a link to an article of Cort's on his Phoenix Rising website. That being the case, I will leave this for him to respond to.

Talk to you later, fellow Canuck.

 

[MEKoan]

Thanks Jodi

Your welcome was so... uhm... welcoming that my confidence in all things... uhm... what is this place called... I seriously don't know... uhm... aboutmecfs is, uhm, soaring? lifting? going upward!

So, I take it I'm not at Cort's site. I'm so confused. Confusion has become my steady state.

Before coming here I was trying to read the news online and read:

Panel awards cash war damages to Ethiopia, Eritrea.

I read it again and again, and again, and yet again, because it made absolutely no sense to me.

Finally, I thought, 'Ethiopia and Eritrea have had such a totally horrendous time, its fine with me if they are awarded car wash damages!'

Ok, back to trying to figure out why my avatar pic shows up in when I click on Koan but not with my posts.



ETA I did it!

 

[Jody]

Well, Koan,

You may be ... conflicted and ... perhaps a trifle confused? maybe? a little?

But you have managed to do something that most of our posters have either not figured out or are too tired to care about You have gotten yourself an avatar for your posts. I commend you.

Oh and in my opinion, Ethiopia and Eritrea are just going to have to work it out themselves. I am too ... busy. Or ... tired. I have my own problems.

So, see? you did good today.

 

[Sing]

Hey, good thinking!

Dear Koan,

I appreciate your wit and good thinking, along with the great example of confused thinking. I feel confused today today as it is hot and muggy and I am tired and hungry--that'll all do it!

Here is one of your memorable lines: "We are all entitled to have a finely nuanced understanding of ME and/or CFIDS and/or CFS. AKA: MAD - Multiple Acronym Disease."

MAD is right!

Have you read Dr. Byron Hyde from Ottawa on www.nightingale.ca for his precise views about our symptoms? He co-wrote a big text book on the subject and has devoted the past 23 or so years to research and diagnostic workups for people with CFS or ME, only. Or www.ahummingbirdsguide.com from Australia, another very thorough synthesis and resource about what has been found out so far, from a very bright woman with ME? I believe they put the cognitive and neurological symptoms first and orthostatic problems.

The CDC and CFIDS.org people have a somewhat different symptom list and hierarchy of symtoms, with fatigue at the top, I believe.

We'll look into all this again on a better brain day, eh?

Cecelia

 

[Frickly]

Koan,

Welcome to the board. It looks like you will fit right in.

 

[Jody]

Oh yes, Frickly,

This one is a keeper.

 

[kolowesi]

koan symptom list

Sista!

Bring it on.

Love,
Kelly

Edit:

I have never questioned "fatigue" as a symptom, but it is not a good name for the oxygen-deprived state I reach when upright too long, or the flu symptoms for days after exercise. I do have a sleep disorder (or three), but they stem from neuro-endocrine dysfunction.

This whole definition thing feels so hopeless sometimes as it seems to be bound up with allegiance to certain people and certain groups, and probably no two of us have the same symptom list. I'm glad some are willing to tackle it.

 

[MEKoan]

thank you fellow inmates - I mean members!

Sing with me here....

We'll think again, don't know where, don't know when,
but I know we'll think again some sunny day...

(With apologies to WW2, or was it WW1, soldiers who know the original song AND apologies to those who are not and who have absolutely no clue what I'm going on about. )

I was so sure I'd remember which kind person mentioned Hyde, et al, but thank you much and, yes, I knew of them. I'm a old time MEer who once lived in Ottawa, the home Hyde. I'm always pushing the Canadian Case Definition as the gold standard at this time. Keep spreading the word, please!

I'll write a little intro. as soon as I am able. It's a pretty standard viral type onset ME story - kinda boring, really.

You seem a lovely, patient and forgiving group!

May all your synapses meet in peace,
Koan

PS Hey, my Sistah! My sweet, wise Sistah!

 

[Sing]

Ottawa, Dr. Hyde

Dear Koan,

I was in Ottawa this summer. Tried to go to one of the ME support groups but just missed one or two of them and the main one I was interested in wasn't meeting until fall. Oh well. Kind of like where I live where people with this problem are too sick to organize, to go out at night, winter driving, summer heat, etc. So online groups like this one here are really valuable--Finally people to talk with!

But, back to Ottawa, when you were there did you ever work with Dr. Hyde or know others who had. Any impressions of him or what he knows that you want to share? I may go back again next summer. I love it up there--

Cecelia

 

[MEKoan]

Hi Everyone.

Cecelia,
I did not see, or at that time even know about, Byron Hyde. I was desperately trying to hang onto the last vestiges of my documentary film career and was too busy tearing it to pieces to consider anything other than poorly considered symptom management at that point. It was a mad and mindless scramble.

Well, I took my own thread totally off topic!

I find the symptom list on the Phoenix Rising page, which I thought was connected to this forum - yes/no/maybe? - deeply problematic. I was going to wait until my cognition improved to address this but who knows when or if that will happen. So, please bear with me here.

PEM is mentioned only parenthetically as an and/or thing. I would question a diagnosis of ME in someone who never experienced PEM. Fatigue, even in the many manifestations given, is way too prominent for my liking while neurological and immune symptoms languish near the bottom of the list. Also, thermostatic instability is listed with muscular symptoms.

I don't get it.

This may seem like nit picking to some but I believe that portraying our symptoms in this way has serious consequences.

Thanks for your attention,
Koan

 

[Cort]

I don't think it's that it's nit picking at all but I'm not sure where you're looking.

At the symptom page post exertional fatigue is displayed prominently:

http://aboutmecfs.org/Basics/MECFSymptoms.aspx

Perhaps the problem is in the diagnostic page- postexertional malaise is there but it's prominence is constrained by the definition. I agree that I should put Canadian consensus definition in there somewhere. I did that page quite a while ago.

 

[Cort]

It is it's an important part of the site. Thanks for bringing this issue to my attention. It was a bit outdated. I changed several sections of the symptom and diagnosis sections. The symptom list is, as I remember it, based on the Canadian Consensus Definition.

 

[MEKoan]

Thanks Cort, that great. I haven't looked at the updated page but I'm sure it's fine now if we have both you and the Canadian Definition at work together!

peace to you.

 

[Sing]

Symptom List, Loss of Work

Dear Koan,

Which symptoms have been most problematic for you? How would you rank some of them? (Who could rank them all?)

For myself, I might put them in this order:

Cognitive difficulties, like memory, tracking, sequencing.

Post-exertional fatigue, with all of its ramifications next, like active illness when I go too far--i.e., flu type symptoms

Aching and pain (Myofascial Pain Syndrome)

Dizziness and weakness; trouble standing too long and with big positional changes like ups and downs (Orthostatic problems)

Multiple chemical sensitivities

What about you?

Wanted to mention that I too had to give up my work, both jobs, when my system fell down into this disorder. I gave up doing private counseling, Jungian dreamwork, and a social work job. I really can be sympathetic towards your losses!

Cecelia

 

[August59]

For me it's a constant changing order of ranking. I probably have 80% of the symptoms listed on that page, but the order for me would possibly be completely different next week as thay are this week. That's mostly because the severity of the symptom's change somewhat in relation to what my physical goals or commitments for that given week would be and would make me re-evaluate how I would rank my symptoms. It's a sliding scale for all of them to say the least. Some of them will come and go. I've had CFS for about 3 years and up until 2 months ago I never had a bad problem with sweating, but the last 2 months have been completely miserable. Taking a shower makes me need a shower, in that by the time I dry off and dry my hair I'm soaking wet. I had no medication or supplement changes around that time. My testosterone was checked and found to be normal (both free / total and direct). Only new symptom to start then was a sudden noise or bumping into something would cause me to startle, jump or jerk back.
Enough about me, but to me it's an ever changing world!