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Date:         Wed, 7 Oct 1992 15:15:30 EDT
Reply-To:     "(Bill McGarry)" <wtm@sheldev.shel.isc-br.com>
From:         "(Bill McGarry)" <wtm@sheldev.shel.isc-br.com>
Subject:      Handicap Digest # 2957

                             THE HANDICAP DIGEST

                                 Issue # 2957

                         Wednesday, October 07, 1992

Today's Topics:


                                ******


                                Re: RSD Group
                          RSD Support Group,You, Me
                                  RSD Group
                         Epidural Steroid Injections
                          Codeine, Oxycodone, etc.
                                    meds
                                 Re: Doctors
                                    meds
                        Re: RSD Support Group,You, Me
                                  Re: RSDS


                                ******


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Subject: Re: RSD Group
From: Mike.Lyons@f210.n232.z1.fidonet.org (Mike Lyons)
Organization: FidoNet node 1:232/210 - The Lyons Den, Pekin IL


[This is from the Chronic Pain Conference]

 JB>      Mike..  just a word of  caution..  seriously
 JB> question (interrogate) your
 JB> doctor if he  in any way  tries to order  steroids for
 JB> your  dads rsd..

I am not positive, but I don't beleive my dad is on any steroids.
I think that he might have taken them at one time, but the thing
that makes RSDS worse with my dad is that he is allergic to almost
all medicine.  It kinda limits the choices to give him for pain
relief.  He will be going to Cleveland OH. soon to see the best in
the nation.  Right now, his only alternatives seem to be an
morphine pump or a (its pronouced fent-a-nul) pump.  So we are
hoping that Cleveland will have some other alternatives, but from
all the information we have about it  we kinda doubt it.

 JB> He is now 40 with

My dad is 43 and has had it for three years.

 JB> one titanium hip.. while they wait for the other one to finish crumbeling
 JB> <they want him to suffer with it as long as possible <even months matter i
 JB> guess> due to his age and size <6 ft) they do not WANT

Who are you refering to when you say "they want him..."?

 JB> to do this until the
 JB> bitter end because he is so young.   With nothing for pain <they dont want
 JB> an addict after all> <rolling eyes>.  So the hell he has been through the
 JB> last 5 years is even worse then the rsd of the leg alone.  It caused his
 JB> massive heart attack last winter.

Are you seeing an RSDS specialist?  And if so, is he trying to get
treatment?  Was the heart attack caused by the medicine?  Well, I
need to get going.

                              Take it easy...  Mikey.

--
Uucp: ..!uunet!bunker!hcap!hnews!232!210!Mike.Lyons
Internet: Mike.Lyons@f210.n232.z1.fidonet.org




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Subject: RSD Support Group,You, Me
From: Arthur.Saus@p160.f72.n376.z1.fidonet.org (Arthur Saus)
Organization: FidoNet node 1:376/72.160 - Windows of the Worl, Columbia SC


[This is from the Chronic Pain Conference]

Hello Mike!

20 Sep 92, Mike Lyons writes to Arthur Saus:

 DR>> The RSD has spread to my right arm and knees.

 AS>> this is not consistant with a diagnosis of Reflex
 AS>> Sympathetic Dystrophy.  A real case of RSD does NOT
 AS>> "spread" from one extremity to another.

 ML> I am not sure who told you this information

My information comes from EXTENSIVE study of this disease process.
I could quote from textbooks dealing with this obscure subject, as
well as my personal experience.  Reflex Sympathetic Dystrophy DOES
NOT spread from one extremity to another.  It may "spread" from the
distal part of one extremity to involve more proximal parts of THAT
SAME EXTREMITY, but it does not spread from one extremity to
another extremity.  If symptoms presented in this way, I would be
sure that it specifically was NOT Reflex Sympathetic Dystrophy.
There are many other severe pain problems that might cause this
type of symptom however.

 ML> My father has seen over 18 doctors
 ML> in the three years of having RSDS and some of them did not know what he
 ML> had and when he explained to them that he had RSDS, some of the doctors
 ML> didn't know what it was.

I'm not at all suprised.  This is an exceedingly rare pain
problem.  As I've stated before in this conference, most doctors
will live their entire lives without ever seeing a case of RSD.

 ML> This is why there is such a need for some form of "education" for doctors.

Most doctors go through extensive continuing education every year
after medical school.  This does not mean every doctor can be a
specialist in every aspect of medicine.  The inability of most
doctors to recognize an extremely rare medical problem certainly
does NOT suggest there is any failure in their education. This
should be expected... this is why physicians specialize...so that
they will know about the extremely rare presentations of problems
in their individual fields of expertise, and also know the latest
information on how to best manage these problems.

 ML> We have contacted a couple of specialists in RSDS and have gone
 ML> to the medical library to get photo copies and even disks with information
 ML> and it all shows that RSDS will spread.

If you have reliable information that contradicts what I have said,
I would certainly like to examine it.  At present, I remain
skeptical that the proper diagnosis had been made if spreading to
involve other extremities occurred. This is not consistant with
what is generally recognized as the pathophysiology of the Reflex
Sympathetic Dystrophy disease process.

I'm "just sharing a little info" too!

Arthur

--
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Internet: Arthur.Saus@p160.f72.n376.z1.fidonet.org




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Subject: RSD Group
From: Arthur.Saus@p160.f72.n376.z1.fidonet.org (Arthur Saus)
Organization: FidoNet node 1:376/72.160 - Windows of the Worl, Columbia SC


[This is from the Chronic Pain Conference]

Hello Mike!

20 Sep 92, Mike Lyons writes to Silky Silver:

 ML> Normally your
 ML> body's sympathatic nerve sends impulses to the brain letting your brain
 ML> know how severe the injury is and generally what the injury is, blood loss
 ML> or broken bone that type of info.

NO!!!  Sorry, but this is not correct!!!  This is not a "normal"
function of the Sympathetic Nervous System!

Please don't spread incorrect medical information.  There's already
enough of that out there.

That's exactly part of the enigma of Reflex Sympathetic Dystrophy.
Somehow, the Sympathetic Nervous System seems to get involved in
something it normally is not involved in.  It's sort of like the
"signals" get crossed up somehow (as you later suggested in this
same message).  Absolutely NOBODY had a good explanation for that
yet!

Your attempted explanation of the process was entertaining, and may
have some truth in it, but it is not based in fact!  It was pure
conjecture, and I suggest you should have stated that in your
message also.

Arthur

--
Uucp: ..!uunet!bunker!hcap!hnews!376!72.160!Arthur.Saus
Internet: Arthur.Saus@p160.f72.n376.z1.fidonet.org




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Subject: Epidural Steroid Injections
From: Arthur.Saus@p160.f72.n376.z1.fidonet.org (Arthur Saus)
Organization: FidoNet node 1:376/72.160 - Windows of the Worl, Columbia SC


[This is from the Chronic Pain Conference]

Hello Linda!

21 Sep 92, Linda Cummings writes to Arthur Saus:

 >> Following this, the only sensation of
 >> the epidural steroid injection should be a hard pressure
 >> sensation, as if someone was pushing on your back with one finger.

 LC> Why can't they put you to sleep for these things?

Obtaining good patient cooperation is important to facilitate
proper placement of the needle, and to get an early recognition of
any complications that might occur.  This is very helpful and is
lost if the patient is "put to sleep".

 >> Some folks notice a
 >> mild cramp sensation either in the back or going down one or both
 >> legs at the time of injection, but again this is not generally
 >> considered painful, just slightly uncomfortable or awkward.

 LC> Mild cramp?  hehe   And what about that burning sensation?  Of course,
 LC> *some* anesthesiologists are really kind to you and give you novacane or
 LC> something to help deaden your legs so you won't feel all the cramping and
 LC> burning.

Well, I've done it both ways after injecting local anesthesia into
the skin. I've given the steroid "strait" and also along with other
anesthetics.  The only appreciable difference I have found is that
addition of the anesthetic gives temporary pain relief for the back
or "sciatica" pain that starts soon after the injection is
complete.  The steroid alone seems to take longer for the pain
relief to start.  Most people do not find the actual injection of
the medication to be painful at all; as I stated earlier, the worst
sensation is usually only a mild cramp that may (or may not) go
into the legs.

Arthur

--
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Internet: Arthur.Saus@p160.f72.n376.z1.fidonet.org




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Subject: Codeine, Oxycodone, etc.
From: Arthur.Saus@p160.f72.n376.z1.fidonet.org (Arthur Saus)
Organization: FidoNet node 1:376/72.160 - Windows of the Worl, Columbia SC


[This is from the Chronic Pain Conference]

Hello Linda!

21 Sep 92, Linda Cummings writes to Jackie Burtch:

 >> what are the significant differences between

 >> tylenol 4
 >> vicoden
 >> percodan
 >> tylox

OK, here we go:

Tylenol No. 4....... A mixture of acetaminophen and codeine
Vicoden............. A mixture of acetaminophen and hydrocodone
Percodan............ A mixture of asprin and oxycodone
Tylox............... A mixture of acetaminophen and oxycodone

 >> what is the difference between oxycodone  vs codeine

 LC> Hope someone who knows will answer you about this.  I'm curious, too.

They are similar, but different drugs.  In one way of thinking
about the chemistry, they are both different modifications of
morphine, although codeine is a direct modification of morphine and
oxycodone is a modification of a related compound called Thebaine.
This results in slightly different effects, side effects, potency,
and duration.

Arthur

--
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Internet: Arthur.Saus@p160.f72.n376.z1.fidonet.org




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Subject: meds
From: Ruthie.Hoffman@f223.n260.z1.fidonet.org (Ruthie Hoffman)
Organization: FidoNet node 1:260/223 - Interstellar System, Vine Valley NY


[This is from the Chronic Pain Conference]

Hiya Linda...

Are you still taking the anti-depressant that you once were??  If
so, which one?  If not, why did you stop it?  And if you never were
taking it, then I'm sorry, I musta mixed ya up with someone else
here.

I also remember Keith Jones saying he was, or was thinking of,
taking an anti-depressant to help him with the pain.  Keith, if
you're reading this, comments????

I took imiprimine 5 yrs. ago for depression (divorce, etc. etc.)
and a tri-cyclic anti-depressant worked well for me at that time.
Last nite I was speaking with a dear friend of mine, who is a
psychologist (who happens to treat people with chronic pain) and he
mentioned that I might ask my doc about trying the imiprimine.  My
friend explained in depth how the anti-depressants help with
chronic pain and also went over with me the best way to approach my
doc about trying this. VERY helpful.

BTW, this friend is and always has been a FRIEND (actually, 6 yrs
or so ago could have been much more...but...Florida is too far away
from NY..grin)  and has never treated me (a little hard for him to
be objective....his words) and I didn't even know he treated people
with chronic pain until about 6 months ago!!  We don't talk "shop"
when we chat.

I'm asking about the imiprimine cuz the darvocet isn't working like
it used to, my TENS unit works well unless I'm  having a higher
level of pain.  Friday I spoke with the doc and I sense hesitancy
on his part to switch painkillers.  Of course, not much to choose
from cuz the tylenol and codine combinations make me sick if I take
them more than once or twice within a day or so, and all the NSAIDs
I've had terrible reactions to.  I have to call the doc office
tomorrow to let them know how I'm doing and to discuss this
further.

Fun..   wow    :-/

CUL, Ruthie

--
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Internet: Ruthie.Hoffman@f223.n260.z1.fidonet.org




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Subject: Re: Doctors
From: Bob.Moffatt@f94.n105.z1.fidonet.org (Bob Moffatt)
Organization: FidoNet node 1:105/94 - Big Bob's BBS, Portland OR


[This is from the Chronic Pain Conference]

> I went to my pain clinic in the summer of 91. The doc's name was
> Dr.Payne... no kidding. I saw that message from the doctor about the
> epiderals not being to awfully painful or bad. All I can say is this guy
> surely hasn't had to be the one on the table getting the receiving end of
> the needle! But, although it didn't work I had to give it a try anyway,
> even 3 tries for the full treatment. Once you reach this point you will
> give anything a try.. eh?

Try 5 epidural injections.  They lasted on me about 2 hours or so.
The doctor who did the epidurals (all 5 of them) finally told me
that it would'nt be a good idea to have anymore.  I hate this pain
and when doctors tell you "well theres nothing we can do"
Sometimes I think if I diddn't have a daughter or a good mom, it
would be easier to end it as to go on.  Especially since my doctor
took me off of all pain medication and put me on Optifast, food was
about all I had and now not only the pain meds but they want to
take that away too, Hell, why not just shoot me in the head and get
it over with, hahahaha I really don't mean that, it just gets so
frustrating sometimes.

                                         Bob

--
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Internet: Bob.Moffatt@f94.n105.z1.fidonet.org




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Subject: meds
From: Linda.Cummings@f34.n375.z1.fidonet.org (Linda Cummings)
Organization: FidoNet node 1:375/34


[This is from the Chronic Pain Conference]

Hiya Ruthie!

 > Are you still taking the anti-depressant that you once were??  If
 > so, which one?

Let's see now, the *generic* name is Trazodone HCL 50mg tablets.
Yes, I'm still taking them.  They help me sleep better.

 > My friend explained in depth how the anti-depressants help with
 > chronic pain and also went over with me the best way to approach
 > my doc about trying this. VERY helpful.

Well, as I was told in Birmingham, it's kind of a dominoe effect.
If you don't sleep well, then you have more stress, which leads to
more pain.  By sleeping better, the pain may be diminished
somewhat.  One side effect is a very dry mouth (and other parts).
But, this could also be in conjunction with the Flexaril, too.  It
also gives you dry mouth.

Linda

--
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Internet: Linda.Cummings@f34.n375.z1.fidonet.org




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Subject: Re: RSD Support Group,You, Me
From: Dave.Resnik@p100.f5.n232.z1.fidonet.org (Dave Resnik)
Organization: FidoNet node 1:232/5.100 - EPE Online, East Peoria IL


[This is from the Chronic Pain Conference]

AS>  DR>> The RSD has spread to my right arm and knees.
AS>
AS>  AS>> this is not consistant with a diagnosis of Reflex
AS>  AS>> Sympathetic Dystrophy.  A real case of RSD does NOT
AS>  AS>> "spread" from one extremity to another.
AS>
AS>  ML> I am not sure who told you this information
AS>
AS> My information comes from EXTENSIVE study of this disease
AS> process.  I could quote from textbooks dealing with this obscure
AS> subject, as well as my personal experience.  Reflex Sympathetic
AS> Dystrophy DOES NOT spread from one extremity to another.  It may
AS> "spread" from the distal part of one extremity to involve more
AS> proximal parts of THAT SAME EXTREMITY, but it does not spread
AS> from one extremity to another extremity.  If symptoms presented
AS> in this way, I would be sure that it specifically was NOT Reflex
AS> Sympathetic Dystrophy.  There are many other severe pain problems

I do not want to start a Board War but I can say by having RSD it
does spread. True RSD is very rare but if you look and see millions
of people have it. It is just never diag. as having it.

AS>  ML> didn't know what it was.
AS>
AS> I'm not at all suprised.  This is an exceedingly rare pain
AS> problem.  As I've stated before in this conference, most doctors
AS> will live their entire lives without ever seeing a case of RSD.

Yes and no. I have been to DR.'s who just did not know what it was.
They have seen it but it was over thier head.

AS> Most doctors go through extensive continuing education every year
AS> after medical school.  This does not mean every doctor can be a
AS> specialist in every aspect ofmedicine.  The inability of most
AS> doctors to recognize an extremely rare medical problem certainly
AS> does NOT suggest there is any failure in their education. This

True 100 %!!!! But you are only as good as the teacher. If the
teacher does not know the subject then all the students will be in
the dark as the teacher.

This reply is not meant to be harmfull towards anybody in the
medical profession. It is just my thinking and the way I look at
it. Please do not take offence.

          TTYL    -=[ Dave Resnik ]=-

--
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Internet: Dave.Resnik@p100.f5.n232.z1.fidonet.org




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Subject: Re: RSDS
From: Jackie.Burtch@p19.f645.n105.z1.fidonet.org (Jackie Burtch)
Organization: FidoNet node 1:105/645.19 - Rob's Wreck Room, Longview WA


[This is from the Chronic Pain Conference]

On (28 Sep 92) Pam Lyons wrote to Jackie Burtch...

 PL>  JB> did i hear a mention of an rsd echo? or conference?
 PL>  JB> Any help you need let me know.
 PL>
 PL>        Jackie, we appriciate your offer for help, and if we need it
 PL> we'll let you know.  How did your husband get RSDS and how is he
 PL> doing?  If you just want to chat or if you have any questions drop us
 PL> a line.
 PL>
 PL>                                    Talk to ya soon,
 PL>

Hi Pam  :)

My husband michael is just turned 40.  He developed RSD in 1984.  A
jackhammer mangled the front of his right leg <shin and foot>.   It
didnt heal properly, but unfortunatly the doctors were not *up* on
rsd at the time.  so... he didn't recieve proper treatment for it
in the magic 3 month window.  By the time he was diagnosed with
it.  It was too late.  He will have it forever.  That pain is
continual.   Akin to burning <like a poker> and walking on broken
glass.. etc..   In a misguided but well meaning attempt to fix the
rsd.  They forced steroids on in 1986/87/88

Injections.. pills..  As a result of this he developed Bilateral
avascualr Necrosis of the Femer Heads.  The death of the hip bones
essentially.  They over time crumble.   He has been in terrible
pain all these years.  They replaced one hip last year.   But he
had a massive heart attack from this pain and stress  ( and dealing
with workmans comp for years).  So it is just now becomming
possible for him to have the second hip replaced.  As there is a 6
to 8 month window after a major heart attack before ANY elective
surgery can be done.  Elective in the sense that he wouldnt *die*
without it.   So hopefully.. soon some of his suffering can end.
They hate to replace hips in a man his age (from age of 37 he has
suffered with this).

Note to all echo mates As I stated before.  Steroids have thier
place in medical treatment.  They are at times needed and
beneficial.  They do work a lot of the time.   ONLY BE AWARE of
what *could* happen.. and work with your doctor regarding this.
They probably know best.    Michaels nightmare is rare.  But it
does happen. Ask questions.. it is your body.  And do not let
workmans comp threaten to cut you off if you do not accept steroids
or a medical treatment you do not feel comfortable with.

They do not know how long michael has left to live now, his heart
was severly hurt.  Hopefully the quality of what he does have will
be better.

Time and god :)

Hugzz pam and thanks for asking :)

jackie

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                  End of Issue # 2957 of the Handicap Digest

                                ******