For Rich- Late Report for Burning Muscles Survey

[Guest guest]

Hi Rich,

I tried three times to backchannel this to you, but somehow I'm not

getting your email address right. Are those " 1s " or " ls? " That is,

" ones " or " Ls (lower case) " ? So anyway, I'm copying it below.

From:

Lynea Search <lsearch@...>

To:

Rich <vankonynenburg1@...> {NOTE: Could you backchannel me

your correct address? Thanks!}

My name's Lynea and I am on and off in terms of checking the Ex list,

and right now I have a backlog of 277 emails--mostly digests from this

or the research line! No big rush on answering my request at the end.

In the process of selectively going thru July Ex line digests, I came

across your hypothesis and request for feedback. I'll try to give brief

but detailed answers, just in case we have a " lurking variable. " (I've

always loved that scientific term!)

Yes, yes on the burning muscles. If you've ever read about my

post-Klonopin withdrawal when the feet and leg burning began, you'll

know that it got much worse then. I recently posted describing this

nightmarish experience; I think it's titled Klonopin Withdrawal. Even

using the computer creates strong burning sensations between the

shoulder blades and in the neck.

Big " yes " on the alcohol intolerance. White Zinfandel I can maybe

tolerate 1 ounce when I really want hard to be " sociable. " But beer, red

wine, hard liquor--forget it. My symptoms: bad, immediate headache (like

cigarette smoke), and a feeling that's hard to put into words. Just

awfulness. Toxic is the best word, perhaps. Possible lurking variable: I

had had a drinking pb. just before finally crashing with this illness

I've actually had M.E., I believe, since 1987; the drinking took place

from 1990 through 1992. Mainly beer, beer, beer; some hard liquor. I got

sick regularly--as in vomiting by the toilet, terrible hangovers.

My first symptoms of M.E. were in 1987, when I was walking around with a

low fever and sore throat on and off for months, even years, while

working and attending grad school and running a household (more below).

No one at the student health center ever thought to test me then

(1987-1989) for EBV. When I was finally tested in 1993, lo and behold:

very, very high titers. I've been on SSI/SSDI now since 1994.

Early emotional stress factors involved difficulties I was having in

a Ph.D. program in anthropology at U. of Oregon. This was due both to

increasing cognitive difficulty in synthesizing all the reading I was

doing (a first for me!), and also due to a " personality conflict " with

true a*****e who was unfortunately the Department Chairman. I had

unwisely permitted to be on my committee, and he blocked my choice of

geographical areas, threatened to fail me in a Reading and Conference

(unknown thing to do). I took him to the ombudsperson, who pretty much

sided with him. So I felt increasingly distanced from grad school.

Other early stress factors (1987-92) were doing too much: working as an

in-home caregiver for three different ladies, being a Teaching

Assistant, being a fulltime doctoral student, and trying to run a

household of lazy males (sorry, guys)--my teenaged son, my young

boyfriend, and my mentally ill brother.

Final stressor: Moving from Oregon to Tucson, AZ in December 1992 for a

book-editing job and a new r-ship with my " boss. " Latter another big

stressor, as we were both control freaks, but he couldn't see it. . .

Intensive editing deadlines also tired me out, though I didn't realize

the connection at the time. Like, we'd suddenly have to finish a final

draft of a book within two days. That meant 10-12-hour days, which were

no longer feasible for me.

But cf. Tucson itself, as summer approached my fatigue and confusion got

worse. I believe that ridiculous daytime mid-July summer hikes in 110

degree weather took something out of me. I remember almost passing out

several times. In general, my exercise level, in the form of walking,

went way up with the move to AZ.

At that point, I wouldn't really say I had FMS. I did have left

wrist/forearm tendinitis from over-practicing the guitar in 1985 (10

hrs. a day). This condition was misdiagnosed, underdiagnosed, as

simply carpal tunnel syndrome. I had to stop playing--a very early

source of nightmarish stress, I would say. I was trying to put together

my own singer/songwriter act. As anyone who plays guitar knows, barre

chords and certain stretches put the whole left hand (if you're

right-handed) into an " unphysiologic " position cf. both the wrist angle

and the position and great pressure placed on the thumb . . .

Anyway, they didn't immobilize my THUMB, a BIG mistake. I know from

anthropology how very important the hands, and especially the opposable

thumb, are to our functioning, including that of our brains. The

thumb (and the lips/mouth) take up a HUGE part of the sensory-motor

cortex in the brain. If a person were to be drawn to a scale based on

the representation of the various body parts in the brain, they'd have

this huge mouth and huge thumbs. I think it's called the " sensory-motor

homunculus " in anthropology. Don't know if that relates to your interest

area here. Perhaps another lurking variable cf. Goldstein on

sensory-motor and prefrontal brain damage?

I am going to be going no mail after I finish reading the posts of the

digests I've missed I find it very stressful to have all these unread

messages, and I just can't seem to keep up with all the new ones.

Answering/reading them takes all my available energy. I feel like Mickey

Mouse in the Sorcerer's Apprentice!

Re work/energy levels: My usual energy window occurs in the morning,

once I have my one cup of tea and come out of the fog from my night dose

of Klonopin (2 mg.). I then have about five hours max of relative

alertness, even with the low-dose stimulant I'm taking. Then comes the

pb. of how to nap. I seem to need some kind of nap or rest every day. I

can't sleep at all w/o K. But I only have 1 mg. for daily use--not

enough by itself to get me to sleep. (When I want to stay up, I use

Cheney's protocol of little bits of K., mixed with little bits of Dexe.)

Anyway, for the nap I take K. (actually, it's clonazepam as I can't

afford K.), 200 mg. Calcium Citrate (Trader Joe's; I know, absorption,

pills, but I'm taking a liquid CA-MG-Phosphorus thing at night). For a

nap I also have been taking a new antiinflammatory called Piroxicam, 20

mg. (every 24 hrs. only). If I'm really desperate, I pop a hydrocodone.

Sometimes I don't sleep during a " nap " ; rather, I get into a hypnogogic

state of some sort. But at least I'm horizontal and the aching feet are

up. Sometimes I get more energy after only a half-hour lying down.

Oh--I also have " venous reflux, " tested last year by a Doppler scan, in

my feet and lower legs, especially the right ones. Like pooling, I

think. Lurking variable?

Supplements you mention: Just started again on Malic Acid (800 mgs. in

AM). It seems to possibly be " wiring " me for too many hours. I'll let

you know if it helps. It's hard for me to afford, but if I knew it could

really help with the pain in low back and feet I'd budget for it and eat

more Top Ramen! Also trying to take enuf, but not too much, Magnesium. I

bought some Mg. Glycinate and am almost finished with it. I don't think

it's helped with my pain, because my feet hurt more than they have since

that episode last yr. in CA. I take 200 mgs. on that, plus there's MG.

in that awful, chalky liquid CA-MG-PH stuff I take at night. No Co Q-10

($ again). I forget the other one you mentioned. But I don't take it!

I started to say that I'm looking for people to alert me to check the

website if certain topics come up. Maybe if other people are as stressed

out by loaded inboxes, we could even systematize this. Anyway, are you

game for the burning muscles and the anerobic glycolysis hypothesis

topic? I thought maybe you wouldn't mind, since it's your hypothesis.

I'll end with a really dumb question. Oh my brain. What is NADH? I used

to know . . .

Lynea Search

--

" A mystic is someone who acts as if God exists " - Underhill

--

" A mystic is someone who acts as if God exists " - Underhill

--

" A mystic is someone who acts as if God exists " - Underhill