Please Help Me!!!

[Toppchef]

I am a T-9 paraplegic resulting from a gun shot wound on 10/1/01. I was in perfect health until approximately March of last year ('03). In fact, I was putting in serios time in the gym and was in both excellent cardio and weight condition. Howver, that has all changed dramatically now... In March of last year after returning from a ski trip I began to have a dull ache-like pain in my stomach after eating. This was soon followed with a burning, low back pain well below my level of sensitivity. By the end of May "03 (several months later) my back pain was so bad that I was unable to exercise. I went to the National Rehab Hospital, not far from where I live just outside of Washington D.C. and recieved therapy for my back for about 10 weeks. I was able to function again, however exercise was still out of the question. During the next several months my stomach became more sensitive to random things and this dull ache following meals got significantly worse. By the beginning of this year('04) this pain began to follow drinking any liquid, in addition to food. Just the slightest drop of food or water gave me this bloated, stuffed, heavy kind of feeling. I found myself eating one meal a day while drinking all the fluids at that same time in order to avoid this pain for as long as possible. However by this point the pain had become constant and just inflamed by food and drink. I also developed a spitting problem... I can not swallow my spit without these same effects so I find myself spitting all the time. Over this year timeframe I had every GI test done that was available, ikn most instances several times. The only remarkable issue was that of profoundly slow gastric emptying. As a result I had a gastric pacmaker placed on my stomach on 4/30/04. Since this procedure was preformed I have gotten worse and worse nearly every day. There is no sign of infection and things seem to be in perfect order. The stomach pain has become outrageous and my back burns so bad that I am unable to sleep, drive, or cocentrate on anything. I can't deal with this and find myself more lost and in the most pain I've ever been in. I've been on huge dosages of baclofen and neurotin since my initial injury. I've tried many other neuro pain meds since the onset of these symptoms. I've been to Neuro, Neuro Surgery, Ortho, Vascular, GI, Pain Man., Rehab, everywhere!!! I'm lossing it here and don't know what to do. The pain is completely out of control and narcotics are doing very little to deal with it. Please someone help me!!!

[David Berg]

I can't offer any practical help, but perhaps a bit of information. It's quite possible tha what you're experiencing is a form of central pain that affects the gut. Unfortunately, central pain is poorly understood and this particular aspect of it is probably the LEAST understood or recognized. It's fairly recent that any doctors or researchers seemed to acknowledge that it was even possible to hav neuropathic pain in the gut and I'd dare to say that most still are ignorant of it.

I have a page posted with some information about this symptom at PainOnline.org. It's written with doctors in mind, but feel free to take a peek at Peristalic or Visceral Pain: Central Pain In The Hollow Organs (http://www.painonline.org/peri.htm).

You say the pain got worse after they put in the pacemaker. You may well need it for the sake of digestion, but I can't help but wonder whether the electrical pulses aren't doing you any favors down there as far as the pain goes.

Just be aware that you're certainly not the first to complain of this kind of pain, that there are others in the same boat. Unfortunately, treatment is still a dificult challenge.

[Toppchef]

I have already had the device turned off. It made absolutely no difference whatsoever... Thankyou for the info on Central Pain!

[dejerine]

Dear Sheckells,

The natural history of receiving care for Central Pain involves a lot of wild guessing by doctors who don't really have a basis for what they do. Most of these misadventures wind up doing no good or making things worse. A good example is the nearly universal attempt to treat CP with tegretol, which has been shown in double blind studies to have no benefit. You will find a posting on Neurontin which is just the latest version of something that may help pain carried in the posterior cord, but is unproven in the anterior cord. Your experience indicates visceral pain may also run in the anterior cord.\

A number of years ago, I succumbed to pressure and began to use TENS for my CP. Unfortunately it caused the shooting pains (posterior cord) to appear on my face, when they had been primarily in the lower legs. I discontinued the TENS, but for about two months I had very frequent shock pain in the face. I wonder if your pacemaker may be acting similarly. I am not expert on gastric emptying but if your pain is unbearable, it seem appropriate to ask your surgeon/gastroenterologist if other methods of encouraging gastric emptying are available. Your symptoms remind one of the loss of skin sensation which causes paradoxical skin burning. However, the emptying is a motor phenomenon, but your pain is a sensory one--so there ARE differences. I am not an expert so do not rely on this. Talk it over with your docs and ask them to read the material on David's site. They may never have thought of the partnership of dimished nerve function accompanying pain, nor the possible similarities to TENS induced pain. There is a bibliography at David's site, which includes an article by Beric, who was the first to report CP activation by TENS. Just a thought.

[metronycguy]

any injuries or falls happen on the ski trip ? and impact or new movement to this area, even something you thought was insignificant? ski pole top get poked in this area?
just looking for possible causes. as i am sure you must have 1 million times..

[This message was edited by metronycguy on 05-30-04 at 09:23 PM.]

[PN]

I have found that these problems that you are having are overwhelming. First, having a spinal cord injury makes you a much more complicated patient to diagnose. I am wondering what is currently the best hospital in the United States that can handle and treat people with SCIs? Craig Memorial in Colorado would be at the top of my list. I can tell from your post that there is a real sense of urgency.

PN

[Obieone]

RSheckells ... my husband had symptoms very similar to yours and in the end it turned out to be a "ruptured" gall bladder ... assume nothing ... investigate the cause don't just treat the symptom ... wish someone had reminded me of that a year ago .... We even tried duragesic patches for the pain which only made everything worse .....

Good luck and blessings to you!
Obieone

[Toppchef]

Thankyou everyone for your responses! I am currently in the hospital and they have stuck an epidural catheter in my spine with Micaine and Dilauded. It seems to help my back quite a bit however it doesn't really do much of anything for my gut. They are baffled with what to do for my gut and say this is the first time they have ever come across anything like this. The plan now is to see if there is any carry over from the epidural. However last night the line mistakenly got disconnected and all the back pain came rushing back. So I see little chance that there will be any carry over of pain relief once the catheter has been removed. I was told today that we will attack the pain with a higher dose of Methidone after the epidural has been removed in order for me to go home. However I don't see how this is going to effect either pain in the slightest bit. I am petrified about going home in the next few days in agonizing pain! I can't function at home like this and don't have a clue what to do http://sci.rutgers.edu/forum/images/smilies/redface.gif Any ideas or advice would be greatly appreciated. Thanks

[David Berg]

I wish you the best of luck. Have a talk with your doctors before you leave about the risk of centralization of the pain. That's different than central pain. Centralization is when the pain is chronic and intense for months at a time and the nerve fibers themselves become sensitized to the pain, firing of their own accord. A neurologist that's familiar with this can explain it much better than me, but I'd also wager you'll come across many doctors that have never heard of this.

All I'm thinking is, if an epidural is helping tame the pain down a bit, then what about the prospects of using a pump for some meds? Whatever the case, I wish you the best of luck. It's a frustrating challenge for both the person in pain and any good, sympathetic doctor trying to help out.

Also, be sure to listen to obie and make sure the pain isnt coming from another source. I had an acute gall bladder attack a couple of years ago (even posted on here about it, from the hospital), and it was a horrible pain at the time. Especially after the stitches ripped loose after my surgery, but that's a whole 'nuther story.

[metronycguy]

yes make sure they are really listening to you and not just assuming the gut pain is related to your other injury and not something new going on..

[booster]

I always ask the doc to repeat what I just told her to make sure she got it right. At first this pissed her off, now it is an effective way to communicate. The first doc who said that this communication method was silly, is no longer my doctor.

[Sci Mom]

I just found and read this entire thread with a great deal of interest. My daughter is a T11/12 complete, five years post injury. For the past six months, she's suffered from pain in her lower abdomen that also prevented her from functioning at her normal levels. It got so bad she couldn't even get dressed by herself. We saw an entire round of doctors, including a gynecologist (everyone wanted to push her off to him, thinking it was "female problems"). He was the first to suggest central pain, although he didn't say it in that many words. David, your article on this topic is fascinating. May I copy it to show her docs?

RSheckells, I can hear your pain and frustration in your posts. My heart goes out to you. It is so hard to be in such pain with no help coming in. Brianna finally has had some relief, though. Her urologist put her on a low dose of Elavil, thinking maybe her bladder was spasming. This has worked wonders, to the point where she is getting dressed independently and getting out again.

Please keep us posted on your progress. I wish you the best.

Vicky

[David Berg]

Vicky,

Please use the article if you think it might help at all. If there's anything at PainOnline you think might help, go ahead and print it off.

I wish you the best of luck.

David

[metronycguy]

Originally posted by Sci Mom:
, Her urologist put her on a low dose of Elavil, thinking maybe her bladder was spasming. This has worked wonders, to the point where she is getting dressed independently and getting out again.
Vicky
low dose of elavil for some of us also works well on central/neuropathic pain, so it still could be central pain

[Wise Young]

Rsheckells and others,

The description of the fullness associated with eating and drinking suggest that there may be other problems besides neuropathic pain. When I first saw this and read that you "had every GI test done", I thought that gallbladder stones must have been ruled out. However, just in case they have not been, your gallbladder should be checked for stones and cause the symptoms that you are describing? Gallstones are very common in people with spinal cord injury. If you have not had gastroscopy, you should get one to rule out the possibility of ulcers.

Wise.

[alan]

Originally posted by Wise Young:

Rsheckells and others,

The description of the fullness associated with eating and drinking suggest that there may be other problems besides neuropathic pain. When I first saw this and read that you "had every GI test done", I thought that gallbladder stones must have been ruled out.
Wise.

Been there, checked that (and for ulcers), all clear. I'm not feeling full from any visceral organ trouble.

Alan

"Was it over when the Germans bombed Pearl Harbor?"

[Wise Young]

Alan, yes. It is important, however, that other causes be ruled out before the diagnosis of visceral neuropathic pain is made. Wise.

[alan]

I'm due for another MRI and ultrasound, if the back and gut allow me to get out. I'm sure they'll show, as usual, that the kidney, gall bladder, stomach, heart attack, fractured shoulder blade, and other organ pain sensations I feel in my abdomen and back are still from misfiring nerves and nothing real (like the lumps in my back and the skinned body.)

Alan

"Was it over when the Germans bombed Pearl Harbor?"

[Toppchef]

Folks this is really getting out of control. I left the hospital last weekend taking 10mg of Methidone 3 times a day and it seemed to atleast take the edge off of the back pain. However, on Wednesday I went back in because of cloudy urine that seemed to have quite a bit of mucous in it. They put me on more antibiotics and I have gotten much much much worse. My stomach is out of control and thus my back is hurting almost as much as it did before the Methidone. I notice that when i nod off or kind of doze in my chair due to the Methidone I get these rushes of pain to my stomach. I also notice that when I'm writting about this as I am now my stomach begins to hurt considerably more. I've got to take a break here. Please somebody help me please, please this is the worst it has ever been. I also have noticed nasea since I began the antibiotics which is a first for me through all of this. I have eaten almost nothing over the last two days. Guys I need some help I'm begging you all, please! Any advice would help...

[David Berg]

Is there a chance you're just having trouble with constipation? I'm not suggesting this to discount the severity of your pain because constipation can be a real problem, especially when it's complicated with other health issues.

[This message was edited by David Berg on 06-21-04 at 12:54 PM.]

[Broknwing]

Sorry, I don't have any help for your pain. I am sorry you are having such difficulties. I do however have a suggestion about your antibiotic & nausea. You said you've barely eaten anything in the past few days. That is very possibly why you are nauseous. A lot of antibiotics cause nausea when taken on an empty stomach. If you can't bear to eat, try something like one of the cans of Slim-Fast, Ensure, Glucerna, or something else along the same lines. I usually drink milk w/meds that are harsh on my stomach, but a lot of times that's not even enough with certain antibiotics. Try this, maybe it'll help your nausea & then maybe even help your overall pain(since then there would be less irritation systemically ).

Hope I've been of some sort of help. Sorry I couldn't be more.

'Chelle
L-1 inc 11/24/03

[Toppchef]

I can't live like this, I'm in an extrodinary amount of pain http://sci.rutgers.edu/forum/images/smilies/eek.gif I just don't know what to do. I feel more lost than I ever have in my entire life http://sci.rutgers.edu/forum/images/smilies/confused.gif Sorry about this, I just can't find any leadership on this issue nor can I find a doctor that truely wants to take on the challenge...

[marco25]

RSheckells, you have nothing to apologize for. We're all hurting for you out here because we care. All I can say is your posts have made me start to pray again.

[alan]

Originally posted by RSheckells:

I can't live like this, I'm in an extrodinary amount of pain http://sci.rutgers.edu/forum/images/smilies/eek.gif I just don't know what to do. I feel more lost than I ever have in my entire life http://sci.rutgers.edu/forum/images/smilies/confused.gif Sorry about this, I just can't find any leadership on this issue nor can I find a doctor that truely wants to take on the challenge...

The doctors don't know what to do, and too many don't care.

Personally, I am sick to death of no longer being able to exercise, do ADLs, breathe, sit, or lay comfortably, go out, etc. This is about the only place I type any more - my back just won't allow me to do much of it. I'm spending less time in my chair, and most of that up time I'm not doing anything but tilting back in the chair. And the pains will keep getting worse as long as I live, even though nothing changes in my neck.

There's no excuse for the American medical profession being unable to adequately treat pain (nerve related or otherwise) in the 21st century.

Alan

"Was it over when the Germans bombed Pearl Harbor?"

[david65]

This may be a long shot but as Dr. Young said, something must be wrong if this was not the norm before. I remember when my stomach hurt so bad that I sat still for a week. By day 7, I could not even tolerate 1 hour of sitting. Came to find out it was an internal hemorrhoid that was sticking out some. They say internal ones will not hurt much, except when they get external. I seen a doctor at the Mayo Clinic and he said the anal area is the most sensitive area on the body because there is a high concentration of nerves there. If you lay in bed for 3 or 4 days, do you notice any relief?


David

[Toppchef]

I'm really dying here! I've begun to become incredibly sick to my stomachn after a round of antibiotics. Is accupuncture worth a try?

[david65]

Do you take any laxatives or stool softeners? Do you drink excess fluids. I ask this because this can liquidfy things and cause cramps. It traps gas. Irritable bowels are just worse on an empty stomach. Fiber might keep things from spasming a lot. Have you had a motilty test. Maybe you are getting mega colon. Lastly, it could be a virus. Chrones disease. If worst came to worst, the large intestines is where gas and pain are felt. If you got an ileostomy, you would not have the colon intestional pain. Talk to a good rectal and colon surgeon about the purpose of the large intestine and how an ileostomy produces no gas bloated feeling or smell. An ileostomy is attached to the small intestines.



David

[brian54806]

Kinda sounds like the pains I lived with for years till I had my gallbladder out 1 1/2 years ago..is the pain more after a high fat meal???
They say 50 % of sci people have problems with gallbladder.
Am like a new person since.

[metronycguy]

f a daOriginally posted by RSheckells:

I'm really dying here! I've begun to become incredibly sick to my stomachn after a round of antibiotics. Is accupuncture worth a try? i like acupuncture for my pain, it has worked wonders for me, but than again elavil and neurontin also worked well on me, acupuncture has taken the place of neurontin and other anti seizures meds.
however your pain really sounds like they are missing something, like its a internal problem. but you saif they have done al the test like twice. this neuropathic pain is so bizarre due to the haywire transmission of pain signals. does it change with movement worse some times than others, positional?
i recommend a pain log , a diary that has a calendar for every day of the year.
cause its hard to remember what we did last week, everything becomes big blur with meds. everyday fill it out with meds taken and what i did that day, how i slept pain wise ( big problem with me) to see if there is a pattern with my pain.. i hope your feeling better today

[This message was edited by metronycguy on 06-25-04 at 08:00 PM.]

[Toppchef]

I can't take this...

[alan]

I hear you. I say that many times every day.

The damn bone-rubbing shoulder blades, the skinned and burning sensation, back bones sticking through skin sensation, feeling of sharp lumps where shoulder blades are, compressed vertebrae sensation, all the abdominal pain that interferes with breathing and eating as I always feel full and tight, the pain in every organ, the ripping skin when I move feeling, and the scoliosis that prevents me from sitting properly and being able to reach things. Plus the appendages. And it only keeps getting worse in my case, despite no change in the hole in my neck. http://sci.rutgers.edu/forum/images/smilies/frown.gif

I hope you can find a med that helps. My bladder is so sensitive to meds, there are few I can take, and those I have been able to take haven't helped.

Alan

"Was it over when the Germans bombed Pearl Harbor?"

[This message was edited by alan on 06-29-04 at 08:23 PM.]

[alan]

This is so depressing. My back and abdomen are the worst they've been, I can hardly do anything (including sit), and I'm ready to say the hell with everything. Yuck.

Alan

"Was it over when the Germans bombed Pearl Harbor?"

[bigbob]

Alan
Sorry to hear how you have been feeling lately. Hope thinks get better soon.

[Toppchef]

Curious if any of you folks here are familiar with the Mensana Clinic just outside of downtown Baltimore MD and if so what kind of experience have you had or what have you heard about it. I'm currently set up for an appointment there next week. I've also inquired about setting up an appointment at Johns Hopkins Pain Clinic in Baltimore however from what I've read it doesn't seem as if anything can be done about this condition. I don't understand what I'm suppossed to do here. It's just so fricken comlicated. If medications don't work I don't know what to do about surgeries. I mean the last time I had surgery for this stupid pacemaker everything went from bad to horrific. This is ridiculous am I supposed to live like this for the rest of my life. I'm 26 years old and my life has been standing still for the last year. I can't go to school nor can I work. I've already had one career destroyed by my spinal cord injury and now I can 't do anything but sit in my bedroom and become further consumed by this discusting condition. I can see how people lose their will to live when suffering from like this. Although on another note it seems that caffiene and sugar really have been giving me trouble. In addition even though I'm not lactose intolerant in the least it appears that milk aggrivates it also. You know I'm also having tremendous trouble with my bladder. I've been experiencing incredible pain in my lower gut/bladder area. This all came about after my last round of oral antibiotics and I fear that I might have another urinary tract infection. I'm scared stiff to expose my GI tract again to antibiotics. I don't know what the hech to do... Any thoughts on this stuff would be great. Thanks

[dejerine]

Dear Sheckells,

This not advice, it is reflection. No one is fit to really give you advice. That would ignore the hard part of CP.

As to your bladder and stomach pains, that is for a professional. Considering Dr. Young's posts, you need a good urologist and a gastroenterologist to evaluate you, it would appear.

If you cannot work, get welfare. YOU are what the system was designed for.

A very sick person in central pain approaches surgery with diminished coping. A surgery that does not help can devastate them. This points to the need for only the best medical care, as you are very ill.

I don't know the clinics near you, but if there is no satisfactory treatment for CP, we may have to wait until there is, no matter where we go. Personally, I think the most important help is from a sympathetic psychiatrist. However, one who lacks awareness of pain states is rarely able to help.

It is my understanding the NIH has a pain clinic, and they may be another resource for you.

As to how you survive, if you cannot work it may be counterproductive to torture yourself over the fact you cannot. You are conserving your life and you are worth it no matter how isolated and different you feel.

Pain exhausts. Locate Dr. Young's post on The Donner Party Phenomenon, or read the article at painonline.com Dr. Young's post is insightful and worth seeking out.

Look at David's site, painonline, and all the sites, and you will read many things that help you.

Best wishes to you. It was painful for us to accept CP and it is painful to watch you go through this initial, most difficult stage. As you hang on, you will unconsciously acquire survival ability.

Your feelings are entirely appropriate. Coping is not something we really figured out, it just happened as we focused on little things each day. In the big picture, there was no means by which we could approach CP, but it happened because we kept facing things.

I hope you will be able to come to an economic situation which you can accept and that you will find ways to get around CP. It is very ugly, and needs a cure, and now you know why I look forlornly at the billions going up to study yet another moon of Saturn when pain needs a solution here.

[This message was edited by dejerine on 07-09-04 at 12:18 PM.]

[alan]

Forget Mensana, most likely. Dr. Hendler's a nice guy, and he was honest enough to tell me he didn't know of anything to treat my pain (I may have posted about it on this site - search for Mensana.) I doubt anything has changed in the last couple of years. Anything's possible, though.

I went through the Hopkins clinic in the mid-1980s (I wasn't near-totally homebound by pain yet, and could tolerate the ride.) Dr. Ricard North handled my spinal cord stimulator (waste of time and Medicare money.) Nice guy. Dr. James Campbell was a good guy, too. I've heard some good things about Dr. Douglas Kerr and central pain from a guy on braintalk, but I never saw Kerr (tried to e-mail him, but never got a reply.)

I also went through the U of MD pain clinic.

Alan

"Was it over when the Germans bombed Pearl Harbor?"

[This message was edited by alan on 07-08-04 at 09:04 PM.]

[Toppchef]

Alan,
Wondering what kind of condition you have say for example SCI, MS, or something else? By the way I don't mean to pry. Thanks

[alan]

I'm a C-5 quad.

Alan

"Was it over when the Germans bombed Pearl Harbor?"

[Kim Lohman]

I am looking for medical help for my son who is 30 and has constant pain in his rectum and tesicles. His sphincter musle convulses constantly. He has had many colonoscopys. They never give him anything for pain and he is very depressed. He is loosing hope and I need help. I don't even know what kind of doctor to take him to anymore. The colon recatal center I took him to was a joke. They were supposed to be the best in Indiana where I live. PLEASE I"M DESPERATE.

[teena]

Kim, it might help to start your own individual thread about this...You have attached your question to a thread that is 4 years old...:)

I don't have any answers, but I do know that folks here will want to know more information about your son...What level of SCI is he, and just a bit more information on your profile...

I hope the SCI nurse sees this...and hopefully she will comment.

Please tell your son not to lose hope...and there are folks who care what happens to him and how he is feeling.

Take care!

Teena

[JakeHalsted]

First, try an acupuncturist. You're in my prayers man. Yes even we gays pray to God...