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Been awhile so I'll reiterate. In 1989 (a yr after
starting my 1st job) I began to have abdominal cramping/pain
constantly. I went through all the tests Tod described and
more. All negative.
My spasms went from 'jumpy legs' that were unbothersome to
severe arching back spasms whereby my torso literally threw me
forward & then SLAMMED me back against my chair. Even
trying to push me through the seat backing (0how strong they
felt) and were unbearable.
At times I get severe burning/needles type pain inside my
arms & legs. And I too am hypersensitive to touch at
times. I take bed baths because shower spray hurts and
triggers awful spasms.
From 1989 to 1994 I KNEW something was wrong. When
one day my right pupil dilated for a week I said "THAT'S IT!,
SOMETHING is wrong!!!" With no local answers I called
Craig hospital. A neuro suggested getting an MRI as I
might have syringomyelia. Sure enough, I had a lengthy
syrinx (cyst) down my cord.
I chose surgery. My spasms are gone but
back/neck/right shoulder blade pain began 2 yrs AFTER my
shunt surgery. Follow-up MRIs and X-rays show everything
is ok but my pain only worsened. But now I do have a
foreign body (shunt) in my spine. With our spines being so
precarious ... we may never know the exact reason for these
problems that become unbearable.
Hats off to Tod & Corie who can work with all that
pain.
I think for Corie & I, DESPITE having surgery for SM,
that it STILL IS SM related or the cord itself. The
nervous system is just that - Nervous! LOL.
I'd eliminate having SM Tod and getting a cervical &
thoracic MRI.
Lori
-------Original
Message-------
Date:
12/05/04 23:43:55
Subject: Re:
[QUAD-L] Bowel / Groin pain (hate to ask)
Hi Tod,
I also have the
severe pain in my abdomen and now spread to my back. My
pain feels like severe ice burning and needles, like I have a
bag of ice sitting on my stomach and back. I have severe
heartburn that feels like an ice pick is stabbing me in the
heart. I have had the CAT scan, colonoscopy, and endoscopy
(twice) and nothing shows up except that my digestive tract is
spastic. I've tried all the medications (Zantac, Pepcid,
etc, Prilosec, Prevacid) and meds for spastic colon (forget the
names) and none of them relieved my pain. My GI doctor
says the pain is nerve pain also, the spinal cord injury causes
false pain signals to the brain. I also think it is from
gas because whenever I have anyone massage my stomach, I have
lots of gas. I also think my digestive tract is highly
irritated from all of the medications and is part of the cause
of the pain. Every time I start a new medication or
increase one, my heartburn gets worse. That's why I really
want a Baclofen/Morphine pump so that I can take at least some
of my medication that way and then it does not have to go
through my digestive tract. The burning pain started in my
bellybutton area several months after my injury and after I
started taking oral Baclofen and it has only spread all over my
abdominal area and back and worsened 100% over the past 11
years. I just can't barely cope with this pain
anymore.
You're the first person I've heard that has had it
as bad as me and it sounds for as
long.
Corie
----- Original Message -----
Sent: Sunday, December 05,
2004 3:56 PM
Subject: [QUAD-L] Bowel /
Groin pain (hate to ask)
Hi All...
Severe Groin Pain is what I call it... and I do notice it
most with gas, unusual bowel programs, or as a hint that
"unusual" is on the way.
It's been a long time since I wrote... not getting messages
and busier than normal... but I check the archives when I
can. And THIS particular problem is a real biggie for me,
too. And, while I haven't found a cure, I've found some
things that have helped. Some a little... others a
lot. Some by themselves and others only in conjunction
with something else.
* I've had the full scan, top to bottom, that I think
wheelchair was talking about. They put me through a CAT
Scan after drinking some thick chalky stuff they tried to say
tasted like Pi�a Colada (sure!), and not eating for 8-10
hours... nada. Nothing found.
* Or, if wheel meant something else, maybe it was this one
where I was scoped from the ends after spending six hours on a
commode chair one night, violently blowing clear water out my
butt (did you call that "Go Lightly" Wheel?), followed by a
barium enema... a heavy, X-ray opaque white metal pumped in
"backwards" that shows the shape and size of the bowel and can
expose any 'raw' or irritated areas, among other things.
Again, nothing found but spasms. (The catheter and balloon
used to insert and hold the barium and solution in was
literally SHOT back at the X-ray tech who kept
saying 'more... more...' just to get the fluid past a spastic
area... LOL!) This was actually kinda cool because I could
see the X-rayed movie of it all happening. (heheh)
* I got to a point where I had my gall bladder removed
because all the Docs could finally come up with was "Referred
Pain" (and it was known I had gall stones anyway... so, no real
loss) that was causing all my discomfort... that was 8 years
ago... no change.
* Acid is a problem. I need to take two different
precription acid reducers. (My insurance hates this!
Both meds are supposed to do the same thing... but the trick is
that they do it using different biochemical/physiological
pathways.) One is an H2-blocker that blocks certain
receptors so your body realizes it has enough stomach acids [the
ones like Zantac, Cimetidine]. The other type is a proton
pump inhibitor [like Prilosec or Prevacid] that stops acid
production in the first place. I have to take both... one
alone won't work for me.
* In my case, the bowels are also 'overactive' ... they're
always on the move so I have to slow them down with a
prescription called Librax (can't remember [or pronounce] the
generic) and sometimes use Immodium to slow "the propulsive
motility of the bowels." Without these, I could be doing a
bowel program twice a day and still be uncertain in between.
* Simethicone [Gas-X] really helps the pain you're describing
at times. I take one every night at bed time since during
the night and waking up are the most painful. I've
described it as riding a bike at full speed with no seat...
just the post... and then hitting a bunch of speed bumps!
I've found that the most painful times are after I'm lying
down and my body starts relaxing, and then
suddenly something wakes me and everything tenses up
again. (e.g. a loud noise, my wife getting in/out of
bed, the cat walking on me or the dogs barking at a noise,
etc.) The next thing I notice is that evrything is
everything is hyper-sensitive (hyperaesthesia /
hyperesthesia). The slightest touch, a tiny movement
whether conscious, subconscious, or even passively (i.e. someone
else moving me even just a little bit), or simply having clothes
or the sheets brushing against the hairs on my arms feels like
*FIRE* or being dragged across coarse sandpaper.
I'm told it's some type of extreme neurogenic pain, possibly
from hyperexcitable spinal neurons, . but real or not, it's the
perception that really matters!
I seriously empathise and hope you can find something
that helps... and maybe pass that info on here if you
do... Right now I'm having a terrible time with this pain
because it's compounded by diarrhea this week... also
painful/stressful on the system. The gas has been getting
worse... and that just gets the whole system going haywire
again.
Take care & best of luck!
Sincerely,
Tod
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