Posted by dazedandconfused on August 21, 2004, at 17:43:45
In reply to Re: Larry - you're my idol! » dazedandconfused, posted by Larry Hoover on August 21, 2004, at 11:10:06
> Do you imagine that I'm going to ignore a post with a subject line like that? <Spock eyebrow>
I was counting on it!!
> > > It's tough. Traditionally, CFS is a diagnosis of exclusion. Check everything else, and if you don't find a diagnosis, you might have CFS. Check my first post, above. The first link gives some ideas of some biochemical abnormalities that you might be able to test for. Also, your experience with environmental sensitivity is also commonplace, with the same cause as CFS.
> > >
> > > For me, it was achieving the stable mood, and then recognizing that a host of symptoms that were once thought to be aspects of severe major depression did not remit along with the mood. This second group of symptoms varies together, suggesting they have a similar cause, and perhaps, treatment. Because you have hypersomnia, and daytime fatigue, it's possible you have a sleep disorder, rather than CFS. Just a thinking point.
> > >
> > > CFS is a bit$*. It helps to gently push yourself, then rest, then push a tad harder, then rest, and so on. Gradually build endurance, but always rest after the efforts. It's been called the finger method, because if you spread your hand in front of your face, you see finger-space-finger-space.... the idea is a finger of exercise (a peak on a graph of activity) is followed by the space of rest (a trough on a graph of activity). Over time, your endurance can build substantially. But always be wary of what I call the energy budget.
> > >
> > > When I look at what I have to accomplish, or what I would like to accomplish, I assess it in regards to my daily energy budget. I awake with some amount of energy, and I've got a little "savings", so if I need a little extra for that day's budget, it's available to me. But just as with money, if I spend it today, it's not available tomorrow. What I must always guard against is going into the red, overdrawing my energy account. If I let that happen, I fall down, go boom.
> > >
> > > Lar
>
> > Hey Larry,
>
> > Let me start by saying I'm amazed at your wealth/breadth of knowledge and am so glad you share so freely with this board.
>
> And by saying so, you make it all the more likely that I will continue. Thanks.No, no...thank you. Really.
> > I lurk often, post seldom, and always read your posts (though many go over my head).
>
> Don't be afraid to ask for the Cliff's Notes version, okay? By the nature of a question, I can often figure out just what the next bit in your personal comprehension is. If I miss the mark, I'm happy to try again. 'Kay?Will do...
> > What you describe is exactly my experience. My mood is fine...not sad at all. I would not describe myself as a moody person. Frustrated. That I can't do more. That nothing seems to help. That I don't feel like I have a defnitive diagnosis. That my cognitive skills have declined.
>
> Frustrated. Ya. I get it.
Frustrated. And a tad irritable. Who can blame us. Sigh...> > I have considered getting a sleep study done. PDOC (who is great) tells me it doesn't matter what causes the sleepiness / fatigue, treatment is the same. Which is true to some extent.
>
> 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......
>
> > If for nothing else, to know which message board to post to:). By the way, I have started perusing the immunesupport.com website.
>
> You can't go wrong posting here, it seems. Bob might move you around, but there is always somewhere, here.Very true.
> > A couple of notes/questions.
>
> Yay!
>
> > 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.
>
> > 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. 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.
> > 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.
> Still, in your case, I'm intuitively drawn to sleep issues. Get that bit sorted out, and your other things may well resolve. You may just be chronically and massively sleep-deprived, despite the hypersomnia.Noted.
> > Basically, I piddle around my house all day, do minimal housekeeping, peruse the internet (obsessively) trying to figure out what is wrong with me, and get nothing done.
>
> 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 feel like until I get my health straight, nothing else much matters. And yes, I tend to hyperfocus on the computer...
> > 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. We both agree my job right now is to get my health straight (with larry's help of course...:)
> > 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?
> Get a foundation, then think about the house (type of life) you can build on that.
That is a wonderful analogy.
> > 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...
> 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.
> > THANK YOU!!!
>
> WELCOME!
>
> > dazed
>
> Not so dazed, from this perspective....Too kind...
> LarThanks again,
dazedPS
"Larry Hoover for President!!"
(subtlety is not my strong suit...)
poster:dazedandconfused
thread:379959
URL: http://www.dr-bob.org/babble/health/20040729/msgs/380508.html