From: "chris pinto" <chris.pinto@canrem.com>
Subject: cfs/fibromyalgia/accutane
Reply-To: "chris pinto" <chris.pinto@canrem.com>
Organization: Canada Remote Systems
Distribution: sci
Date: 21 Dec 92 17:49:58 EST

>David Nye
I'm glad you have found my discovery helpful for your patients.  It was
a huge vast help to me and I thought others who have what I have should
know about it.

>he will deserve the credit.

If you publish a paper on this feel free to add my name to it, after
yours.  :-)  That would be neat.

>Maybe this will get more docs to read this newsgroup, too!

I think a moderated conference would fix things.  On the other hand
initially I was worried about intruding on this doctors conference,
until I saw all the crackpot messages being posted and replied to.  Then
I ceased to worry. :-)

>Interestingly, she had a couple of nights of poor sleep after dropping
>the dose, but didn't suffer any increased pain the next day, which is
>most unusual for her.

A similar thing happened to me too.  Before I started the accutane
getting up early(only 5hrs sleep) would increase my pain by a whopping
factor of 10!  After a few months on the accutane I was surprised to
find this increase in pain dropped to a factor of 2 or 3, and after 6-7
months there was either no increase or only a minor one.

>You were able to stop the accutane after several months and your
>symptoms didn't come back?

I didn't want to comment on reoccurrence of symptoms in my earlier
messages until I'd given it enough time to be sure.  Now I have been
back on the accutane at 10mg/day for 3 weeks after being off it for
2 months.  And I must say its just amazing how much better I feel back
on the accutane.  When I went off the accutane the first thing I noticed
was a huge improvement in my fatigue level then after the first week
there was a slow increase in pain, general sickness feeling, and to a
lesser degree fatigue.  By the end of two months the pain and the
feeling sick got quite bad(1500mg/naproxen SR and 40mg/toradol all at
once and I still spent most of my day in bed on my bad
days[1 out of 3 days]).

I restarted the accutane 3 weeks ago at a lower dose of 10mg(was taking
40mg before I stopped) and within 12 hrs was feeling slightly better,
and the 2nd day I felt much better.  I now feel less sick, less pain,
but more fatigued.  A good trade I think.  I have constantly felt much
better the entire past 3 weeks on the accutane.  I'm a lot less fatigued
now on the 10mg/day then I was on the 40mg/day.  40mg/80mg was necessary
when I was much sicker, now 10mg is fine.

During the 2 months that I was off the accutane I had a lot more energy,
but I thought I could still use a little more energy.  So I took tenuate
(an amphetamine) and it caused an increase in the pain that got much
worse the longer I took it(4 weeks).  Got better when I stopped the
tenuate.  At its peak the pain dwarfed the pain that I mentioned above
(were 1500mg naproxen and 40mg toradol was not very effective).

Observation: The toradol seems far more effective while I'm on the
accutane.  More then would be accounted for by the less pain it has to
counter.  The naproxen works equily well on or off the accutane.

>Hmm.  Doubtful.  It turns out that there isn't really any inflammation
>in fibromyalgia to speak of, it just feels that way.

I think in my case it is inflammation.  I take naproxen and toradol.
The naproxen distinctly takes away a feeling of what I think is
inflammation(and also helps fix a feeling of weakness).  Were the
toradol alone doesn't touch that feeling nor the weakness, but does a
much better job on the pain.  Which fits the fact that toradol has
little anti-inflammatory effect.

It just thought of something.  If the accutane is speeding up the
maturation, the death and the replacement of inflamed cells, and
viruses reproduce in cells(eh?), besides the direct inflammation/pain
fixing that would also kill off a lot of viruses and slow the over all
virus population reproduction rate, generally making me healthier.  Or
am I totally wrong here?

Also if accutane works on inflamed cells wouldn't the naproxen(an
anti-inflammatory) inhibit the action of the accutane?  I stop taking
(except rarely) the naproxen and toradol a month ago because of an ulcer
(I can't tolerate cytotec).  That may partly account for why I now feel
better on 10mg of accutane then I felt on the 40mg 3 months ago.

I really should visit a medical library and read up on this stuff.  Have
you read up on accutane?

I read the reposting of your description of fibromyalgia and I'm not
sure that's what I have.  There is a lot in common, but there are
several significant differences.  No tender points, no morning stiffness
(its better then if anything), no extra pain when sleep is disturbed,
but getting up after only 5 hrs sleep would cause the pain to jump up by
a factor of 10(extreme pain when I was very sick, now over a year ago).
I also had several symptoms not listed like pain in lymph nodes in neck,
swollen throat, and brain damage or impairment(got much better as I
recovered).  If you like I can mail you the complete description that I
typed out for my doctor.

Have any other patients had success with the accutane?
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