Posted by Larry Hoover on August 22, 2004, at 8:41:31
In reply to Re: Larry - you're my idol!, posted by dazedandconfused on August 21, 2004, at 17:43:45
> > Do you imagine that I'm going to ignore a post with a subject line like that? <Spock eyebrow>
> I was counting on it!!Nota bene: I didn't change it, either. ;-)
> > Your pdoc is wrong. The whole point of a sleep study is to study *your* sleep. Not a hypothetical average guy's sleep.
>
> Noted.
>
> > > But I firmly believe a firm diagnosis is necessary.
> >
> > Yes, it is.
>
> Thank for for your affirmation. After I decided to heck with the experts and to become fully accountable for my own health, it seemed as if I was viewed as a hypochondriac ("You sure think about your symptoms a lot don't you...). Truth be told, I'm the opposite of a hypochondriac...ignored my health for years...which probably contributed to my illness. Vent......Me too. Remember when CFS was called the Yuppie Flu? Talk about trivializing the suffering of others.
For most people, what it takes to get a credible level of support for their symptoms is persistence, in spite of the attitudes of others. After time, the cogent variable becomes the length of time that these symptoms have persisted. Moreover, unlike hypochondria, which links symptoms from diverse and unconnected parts of the body, CFS manifests itself as absolutely consistent and persistent symptom clusters.
> > > 1. What makes you think a sleep disorder vs. CFS? I thought hypersomnia and daytime sleepiness were also symptoms of CFS.
> >
> > Restorative sleep, the feeling that you got enough, comes from specific types of sleep. If you're not getting those stages, in sufficient amounts, your body can react by increasing the tendency to sleep....but that still can fail. You hypersleep, but still wake sleep-deprived.
> >
> > CFS/fibro can also manifest with intractable insomnia. I suspect it has to do with whether your adrenals have failed yet, or not. But I don't want to distract this discussion onto a hypothetical tangent..... Push for a sleep study. Push hard.
>
> I will. Tapering off Effexor now. Other than that, take Xanax as needed to get to sleep. Would like to have study done when I am as "clean" as possible.Generally, the best idea. I hope your withdrawal from Effexor is uneventful.
> > > 2. Again with the diagnosis. I also have major organizational / concentration / ADD symptoms. Neuropsych. testing showed no abnormalities.
> >
> > Good call, to check for brain/CNS abnormalities.
>
> Not sure about this. I had neuropsyological testing done by a psycholgist. Stuff like the MMPI, written tests, etc.OK, that's actually going to be very useful for you. There are a number of different sub-scales within the MMPI that assess hypochondria, the tendency to exaggerate complaints, your locus of control (internal control is ideal, as you manage your own world, versus external control, which leaves you the victim of everything around you), somatization..... What were your results like?
> No brain scans , MRI, or the like. Actually, side note, had a QEEG done by Dr. Arnold Lieber (has a couple of articles on Dr. Ivan Goldberg's site). He diagnosed me as bipolar. He's not my PDOC though. And he is the only one out of four I interviewed who reached that diagnosis. Kinda interesting...brain imaging holds such promise I believe.
Indeed. The hard line that some draw between e.g. major depression and bipolar is an artifact of the nosology (the organization of diagnostic parameters) rather than an empirical fact. Mother Nature doesn't draw lines, last time I looked. You might want to check out the following website. It expands the thinking from that in the DSM. http://www.psycheducation.org/depression/02_diagnosis.html
Look around the site. It has a lot of information and ideas.> > > I can of course hyperfocus on some stupid test in a test setting, but I still can't balance my checkbook. Or clean my house. Or keep up with laundry. I have enormous difficulty comprehending what I read. Or I fall asleep when I read. Now I find out CFS can include cognitive / ADD like symptoms. Again, how do you tease it out? (other than relying on the "experts").
> >
> > Just as there is no real definitive diagnostic test, there is no definitive treatment. Nonetheless, there are treatment protocols. You try things that have worked for others, and if e.g. sleep restorative parameters, and cognition improve, then you're on the right track....your right track.
>
> Noted. I still feel it is important to distinguish between ADD and cognitive impairments associated with CFS. By intuition, it would appear they could be distinguished by whether symptoms were apparent in childhood or not.Possibly, but recall from childhood is notoriously unreliable. Children have not yet developed the capacity to self-assess. Some adults never get that far.
The distinction between the two diagnostic categories is generally left to empirical processes. The "treatments" or coping strategies for each are distinct enough that you can infer the nature of the problem based on whichever processes seem to be more helpful. Medicine is like that a lot. A lot more than people imagine it is, anyway.
> > Ahh, but you successfully focus on Internet work. Don't dismiss that, okay? You're following your gut, non?
>
> Again, you are right...and thank you for the affirmation.I'm good at that part. :-)
> I feel like until I get my health straight, nothing else much matters. And yes, I tend to hyperfocus on the computer...
So, you *can* focus. Right now it's targeted. Nothing wrong with that. It's what you know you need to do. You gotta figure out why your life feels like so much work.
There are other aspects of Internet, of course. You meet people like me, that way. <very tongue in cheek> I get cheeky when I'm feeling betterer.
> > > Many unfinished projects, disorgnaization, etc. Basically overwhelmed with the tasks of daily life...not anxiety overwhelmed. Just feel busy all day, and get nothing done. Haven't worked since I got sick (married...luckily)
> >
> > Yup, lucky. Lucky have (assumed) understanding partner, too.
>
> Very understanding. I am harder on myself than anyone.You can do something about that part, too. Comparing yourself is hard work. The old you is not relevant right now. The stuff you wish you could do only burdens you further, to the extent you worry about those expectations.
Here's a little Larry anecdote.
About six year ago, I was going through an amazingly rough stretch. I'd get up in the morning, stumble down the hall to the couch, lie there all day, and stumble off to bed. I may or may not have bathed. I may or may not have eaten. I lost all track of time and calendar. I missed a hearing for disability eligibility altogether (the dismissal notice came six weeks after, and I went, "Huh? That happened already?") Ya know? Totally messed.
I did get my sh....er stuff together enough to make it to some counselling sessions, doctor's appointments, but of course they saw me bathed. Still, I made it out. But the rest of the time, I just lay there, thinking about the disastrous condition of my apartment, of my life....
My couch was one of those futon things. I noted that there had actually been created this dent in the surface, this Larry-shaped dent, from my daily laying there. It made me even sadder.
Then, one day, I had an epiphany. I realized that one of the reasons I wasn't getting anything done is because I used up all my energy lying there and thinking about the mess. That day, as I made my way to the couch, I looked at the Larry-shaped dent in a new light. I saw it as the futon's special Larry-shaped place. It was waiting to hold me, so I could rest. And as I lay down that day, I felt it cradle me, and I felt secure and protected. I truly rested, that day. And the next. But those were my last ever couch days. I didn't do that any more.
From that experience, I developed my concept of energy budgeting. I had real evidence to show the waste of energy from the inefficiencies of comparing myself to my past performance, and from carrying around unmet (and unrealistic) expectations. Every day, in every way, I'm the best that I can be. And that is good enough, for me. That is good enough, for ME.
> We both agree my job right now is to get my health straight (with larry's help of course...:)
....reporting for duty, ma'am.
> > > 3. What's your opinion on the use of stimulants and Provigil in the treatment of CFS?
> >
> > Can make things worse, if you haven't addressed the underlying vulnerabilities. Like flogging a tired horse. You get a little more output, but at a very high price.
>
> Noted and agreed. PDOC prescribed Provigil but I haven't taken it for the very reason you describe (something doesn't add up when I need Xanax to get to sleep and Provigil to stay awake). Does your opinion vary if person has CFS and ADD?No. The CFS has to be respected, too. I would start there. What you're thinking of as ADD might be complicated or exacerbated by the other stuff.
> > Get a foundation, then think about the house (type of life) you can build on that.
>
> That is a wonderful analogy.Thank you.
> > > Okay, this is a long enough. Very interested in any info you have. I would like to respectfully post another message to you over on alternative about treatments.
>
> I am still drafting it. It may be a doozy...Doozy me, baybee! <said teasingly>
> > Respectfully is nice, but I don't like to sit on the pedestal. I'm afraid of heights.
>
> I hope you know how much you are needed here and how much you contribute to this board.I keep getting reminded of that. My childhood has made it so hard for me to accept compliments, to even accept my own assessments of my behaviours, if they are positive in character. I'm working on it.
> > > THANK YOU!!!
> >
> > WELCOME!
> >
> > > dazed
> >
> > Not so dazed, from this perspective....
>
> Too kind...Too honest?
> > Lar
>
> Thanks again,
> dazed
>
> PS
> "Larry Hoover for President!!"
> (subtlety is not my strong suit...)I wonder if I am an American citizen, too. My dad's from California. Does that give me dual citizenship, and thus, at least technical eligibility for the Presidancy?
Lar
poster:Larry Hoover
thread:379959
URL: http://www.dr-bob.org/babble/health/20040729/msgs/380753.html