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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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