Multi-System Breakdown in CFS: Central Nervous System

Hi there.

I'm sorry to hear that you're having such a bad time with your eyes. You have my sympathy.

You may have something different going on than me, but I'll share my experience with you anyway. I went to an optometrist, and found I needed slightly stronger glasses. That was early on, in 1999.

After I suffered a mean bout of vertigo a few years later and everything got substantially worse, I saw an ophthalmologist. He said, the problem wasn't with my eyes. He couldn't find anything that my regular glasses didn't take care of.

He said from what I described to him, the problem sounded neurological. In fact he said it was obviously neurological. But he said my eyes were functioning just fine ... just a little near-sighted.

And a little far-sighted. :-) I have one of each. But that wasn't new, my eyes have been that way since I was a kid.

Neurologist by the way couldn't find anything wrong. But he did make a point of saying, he has to tell people that every day. Neurology is a relatively new field he said and there is still so much they don't know. And he didn't want me to think that his not finding anything didn't mean there wasn't anything. Just that he could not find it.

He didn't doubt that I was experiencing exactly what I said I was, and he didn't doubt that my symptoms were real and distressing.

I've since heard about many far different responses alot of people have gotten from doctors and I realize how fortunate I was to find this guy.

Funny you should mention a book. My naturopath was just saying yesterday that she thinks it may be time to think about writing one.

Thanks for writing today.

Jody

hi Jody!

what are the chances that i google "cfs and blurred vision" and your article is one of the first i open!... love it!

my vision has gotten VERY bad as of late. i'm suspecting my change in habits, with going from being online just alot, to a WHOLE lot (with the small online business, now). very worried, as normally i get the blurred vision when my fatigue is EXTRA bad, but now it seems to be constant.

i'm avoiding an eye doctor, as the dilating drops are very toxic for me.

but also, i have never had my symptoms described so perfectly, as you always do. right here, this time:
"Our vision gets fractured. We can see, but what we see seems ... out of time somehow, broken up, blurry."

yes, "out of time"! more like being drunk, often, than anything else i know to compare it all to.

i will come back and reread. my vision has really been limiting my ability to read anything longer than a Facebook status or multiple comments, lately.

great article!;) as always!... i wish i could get them in book form!;)... i suppose i could print them out! never thought of that!;)

This is the first thing I have read in a long time that described my symptoms so well. When I am feeling "CFS-ish" I often get severe vertigo and feelings of burning in my hands and feet when I touch something cold, etc. in addition to the exhaustion and aches.

I had a severe onset about 16 years ago and then numerous relapses of feeling ill - some minor, maybe a few weeks in duration whereas others have lasted months and caused a lot of upheaval and stress in my family life.

Here I go again. Complete with feeling misunderstood at home and work and very frustrated with my inability to perform as usual. No wonder we get depressed - this is depressING.

I would be interested in hearing from others who have had a long duration like this. Does it ever, ever go all the way away?

Our vision gets fractured. We can see, but what we see seems ... out of time somehow, broken up, blurry.

"Parasthesia, the spooky swirling sensations, numbness and tingling, and sharp sparks of pain that come and go, are nervous system misfires.

These neurological symptoms alone are enough to thwart any CFS sufferer's day-to-day life. But what you've seen is just a small glimpse into the destruction caused by the multi-systems breakdown of Chronic Fatigue Syndrome."

Powerful stuff! So nice laid out. Thanks!

Jody I do understand how you were using the phrase :) And I agree, it is a one size fits one illness. I may be confused about the term 'designer illness', but from the Anonymous comment above it seems I'm not the only one. I agree that it connotates that M.E. is 'trendy', or in other words a fad, which suggests it shouldn't be taken seriously. I think breakdown is an apt word for what is going on, but do agree that the difference between 'nervous breakdown' and 'breakdown of the nervous system' is a distinction that some people might not understand. There many semantic issues revolving around CFS/ME, and such things take attention away from other important issues. But unfortunately there are so many misconceptions about this disease out there, we awareness-spreaders must be vigilant and careful about our words. I've done similar things in the past myself. Another place it gets tricky is when you are discussing the role of psychology, which you also wrote about recently. We walk a fine line between recognizing that working on your thoughts - which do have real chemical correlations in the body and can indeed affect health - and the idea that your mind can cure you entirely. Such discussions often lead people with ME/CFS to feel they are being told "it's all in your head", which makes us defensive and angry, because it is like blaming us for being ill. My personal opinion is that with this illness, our bodies are too far 'broken down' for cognitive therapy to reverse the effects, but that it can definitely help us cope. It took years for our bodies to break down enough to become this sick, and it takes years for our bodies to recover, if they can at all. I've read about things such as the Lightning Process, which claims to cure you in a 3 day course without any medical intervention at all, and I find such claims prey on our desperation - the cost of the course is high, especially for those of us on disability and other extremely limited incomes.

Anyway, that is besides my point. When it comes to semantics, us M.E. advocates do need to be meticulous in order to avoid reinforcing the myths about our disease that perpetuate stigma.

I enjoy your column very much Jody, keep up the good work! :D

I also think the term 'designer illness' is misleading. I understand what you are meaning but it does risk giving the impression that M.E is the current 'trendy' illness bandwagon to jump on. Sadly, that is a view still held by uninformed doctors and others and such a description could perpetuate that view. I also think the use of the word 'breakdown' in this piece risks being understood as a nervous breakdown, which M.E certainly is not.

Very good article but for these terms. Thank you

You're right, that's not the way I'm using it at all. Far from it. I have never heard the term "designer illness" used to mean "made up". Not sure where that would come from.

What I am saying is that this illness is unique to each of us who has CFS. It is custom-tailored, so to speak, to every person who suffers from it. There is such a wide range of symptoms, which makes diagnosis and treatment even harder.

Doesn't the term "designer illness" mean "made up illness"? I know that is not the way you are using it here but ...