I'm an incomplete para but have the same problems. My legs wouldn't go
straight when I wanted them to or would shoot straight and lock when I wanted to
bend them. I take 1200mg of neurontin 3x a day and 40mg of baclofen 3x a
day. My doc started working zanelfex into it. When I saw the pain
specialist, he put me on a low dose of methadone and it helped everything
considerably. I still have pain but no where near as bad and helped my
spasms.
Stacy
----- Original Message -----
Sent: Monday, August 22, 2005 9:14
PM
Subject: FW: Re: [QUAD-L] Pain and
AD
I have developed that same problem. My legs tend to stay
contracted. I can
force them semi-straight, but they bounce right back up.
At night they just
about kill me. They feel like taut rubberbands that
tremble and
shake......and hurt. Baclofen helps a bit, but not much. Makes
it hell to
put on my pants. I too was in a wreck that broke my legs and
jammed my hips
(1993). I guess the results are now catching me. Wm.
Willis
>From: "Greg" <[EMAIL PROTECTED]>
>To: "Lana Baugh"
<[EMAIL PROTECTED]>
>CC:
<[email protected]>
>Subject:
Re: [QUAD-L] Pain and AD
>Date: Sun, 21 Aug 2005 13:35:29
-0700
>
>I take Neurontin too, but for me, that only helps with
the arm tingling and
>some arm pain. It does nothing for my real bad
body pain.
>2 years ago, I went into the ER spamming very bad, hard
enough to be
>grunting. I as breathing hard, but felt like I was not
getting enough air.
>Almost panic attacks.
>One day I noticed my
right leg would not goes perfectly straight, it would
>if you pushed
it, but once you let go my knee would pop up about 4 inches.
>My right
thigh hurt so bad I was going crazy. It felt like it was being
>crushed
by a vice. I would wakeup from nightmares of my leg being on
fire.
>After a bloodclot test, catscan, and MRI, they found I had H.O.
(sp?
>Hepeotopic Ossification) on my hip. A year before I slightly hurt
my hip
>and the bruise on my hip calcified into bone. Grew like tree
branches into
>my muscles.
>So I guess I was having AD but
without the sweating.
>They got the H.O. to shrink, but the pain is
still there.
>The MRI also showed a "Thing" on my butt, though under the
skin. No sore
>every broke threw. I changed to a Roho, do more pressure
releases, etc.
>After a year they did a ultrasound and found nothing,
but they would not do
>another MRI. They said it could have been a
sore, or some bruising around
>the bone after 20 years of
sitting.
>They still don't know for sure what is causing the pain. They
say neither
>one of those should cause that bad of pain. I think it's
obviously one of
>those
things.
>Greg
>
>
>
>----- Original Message
-----
>Gabe takes 2400mg of neurontin for pain. Recently I increased
oral baclofen
>and pain is reduced significantly. However the AD still
appears everyday.
>We have seen Ad appear over anything. Wrinkled
sheets, underware too tight,
>you name it. I think you're right we need
to explore the kidney stones and
>gall
stone.
>
>
>Thanks,
>
>Lana
>
>Gabe's
mom
>
>
>
>
>--------------------------------------------------------------------------------
>
>From:
Greg [mailto:[EMAIL PROTECTED]
>Sent: Thursday, August 18, 2005 1:19
PM
>To: Lana Baugh
>Subject: Re: [QUAD-L] Pain and
AD
>
>
>
>I'm no expert, but in my 23 years of being a
quad, doctors have often said
>that one thing or another should not
cause AD or that much pain. BUT they
>were wrong.
>
>I
would guess kidney and gall stones would hurt even if small. My aide had
>to go to the ER from stomach pain and it was gall stones. I've had AD
from
>small things like my shoes (very loose shoes, but my feet swell),
or just
>my Superpubic cath not clogged but just needing to be moved
around. Maybe
>it gets poking my inner bladder... who
knows.
>
>Is he on pain meds other than Baclofen? I have to take
40mg of Oxycontin
>for my pain. I tried all those spasm pills, none
worked for me. Oxycontin
>stopped my spasms completely and helps the
pain a
lot.
>
>Greg
>
>
>
>
>
>-----
Original Message -----
>
>From: Lana Baugh
>
>To: [email protected]
>
>Sent:
Tuesday, August 16, 2005 6:59 PM
>
>Subject: [QUAD-L] Pain and
AD
>
>
>
>I have posted several times about Gabe, my
son and a problem that he is
>having with autonomic dysreflexia (AD)
and pain. It started with AD in the
>late afternoon and some
bladder and bowel spasms would follow. The Ad would
>resolve when he
would lay down. Now he has serious pain. We have been to
>all the
doc's. The urologist says he has two kidney stones. One in each
>kidney. She thinks they are to small to cause the problem, but says
it's
>possible. Neurosurgeon says his shunts are ok and he does not
think
>anything in the spine could cause this. The abdominal ct shows a
small gall
>stone in the neck of the gall bladder. The surgeon doubts
it's the cause.
>
>
>
>So I started thinking about
when was the last time Gabe had pain like this.
>It was before he got
his baclofen pump and the central cord pain, skin pain
>and spasms
about killed him. He got a new pump last summer and almost died
>from an allergic reaction to an antibiotic. So he went two months last
>summer without his pump when he was in the hospital. He was drugged on
>morphine for most of the time. He was too ill from the allergic
reaction to
>replace the pump. So his baclofen pump dose now is a lot
lower then it was
>before last
summer.
>
>
>
>So the question is.. could the pain
that is going on now be central cord
>pain and the AD be a response to
the central cord pain.
>
>
>
>I've made an apt for him
to see his rehab doc. Until then I'm going to give
>him oral baclofen
everyday as an experiment.
>
>
>
>What do you guys
think? I'm asking you guys because Gabe can't tell me
>everything
that's going on. When it comes to this problem he can just tell
>me about the
pain.
>
>
>
>Help!
>
>
>
>Gabe's
mom
|
