8 replies to this topic

[Apparelyzed]

Hi,

Has your son had a Gastoscopy yet to see if he has any stomach ulcers or tumors?

A Gastroscopy, (gastro- stomach; scopy-looking) is a diagnostic test that enables the doctor to look inside of the esophagus, stomach, and duodenum.

If not, I would ask for this to be done as soon as possible to see if there is anything abnormal looking.

Regards

Simon.

[Joed]

Hi Angelo...

It's been my experience that most non-neuro doctors will give you that same blank look when you're asking the tougher questions about a spinal condition. I've actually had to explain to a doctor what 'spina-bifida' is, and this was one of the Social Security Disability's doctors.

It certainly wouldn't hurt to consult with a neuro, considering that you're getting nowhere with this route as it is. S/he may know of specific symptoms like these related to either the meds or the spinal condition itself.

The not knowing is maddening, I'm sure. Common sense dictates that there is something amiss...whether the tests reflect that or not...it's not enough to simply say, 'Hmmmm....we couldn't find anything, so he must be okay to go home'. I would hope that someone would be perplexed enough to continue to search until an answer is found.

Doctors!! Boy, we love 'em and we hate 'em, don't we? I hope you'll be able to find one who will make it his/her own personal mission to get the answers you need. Please keep us informed how it goes.

[AHolland]

I have somewhat similar circumstances here, although I think mine is related to a medicine change.

About 4-5 weeks ago I had a significant increase in pain. Really significant. My doctor changed my pain killer from oxycodone to fentanyl. Since that time I have experienced a rash of new and not fun changes. I am not sure if they are symptoms of the change in my body that caused my pain, or a result of the change in medicines. I am also on Ditropan and Baclophen as a SCI personage.

Every morning I wake up feeling like I want to throw up. I have to get food into me quickly or I'm in trouble. About 30 mins after I eat the food, my stomach settles out.

I use to have bowels that tended towards being constipated, although that could be associated with the codeine in the previous pain killer by some. Fentanyl does not have diahreah (never could spell that) as a side effect, but my bowel accidents have gone way up and my bowels are definitely loose. I am thinking it may be a side reaction from going off a long term constipative medicine and my body is adjusting to not bein constipated.

I also have an increased pain in my stomach and legs. I meantion the stomach because it was similar to your case. I also meantion the legs because it happened at the same time. This pain is similar to the burning/electrocution type pain that a lot take neurotin or tigertol for. I used both those medicines with no advantage unfortunatley.

I have no answers for what you are experiencing, or what I am experiencing for that matter. I am generally in good contact with my body and it's feelings and my best guess is that a nerve, or nerves have finally touched together after a long time and I am experiencing greater nerval information which is translated into greater pain. It's only a guess but I feel strongly about it.

[carolline]

Hi Angelo
Sorry to hear about your son
Is he had a stool exam?And you need to check what kind of food is he eating.Coz sometimes there's a certain food that make a bowel lose.And as mentioned here something about medicine change.Commonly for SCI person is having a constipation.

I have a sugestion here maybe you can try for him,while looking for second oppinion.I have a list of FOODS THAT HARDEN STOOL.........
Applesauce,strained fruit juices
Milk,hard cheese,cottage cheese,plain yogurt,ice cream
White bread or crackers,refined cereals
Cookies,pancakes,noodles,white rice and rice cereals
Creamed soups and sauces.

And try to avoid:FOODS THAT SOFTEN STOOL:
High fiber foods,fresh fruit,fruit peel,prunes and other dried fruits,unstrained fruit juices,yogurt with fruit bran,whole grain breads/cereals/crackers,brown or unpolished rice,Raw vegetables/salad,cooked vegetables(green,beans)potatoes(baked or boiled) in their skin,beans,lentils,spicy food,coffee,dark chocolate,carbonated drinks.

I hope he will be fine.

[Bob Clark]

Hi Angelo,

Sorry to hear about the recent addition to your son's pain collection. It really sounds like it's related to his GI tract so what I have to say may not be of any help. But before I start, has he been checked out for diverticulitus or gall stones? And has he ever been to a pain clinic?

I'm 50 years old and have been a complete T-5 paraplegic for 26 years and never had any severe or acute pain like so many others here have. Just the run of the mill chronic butt, knees and feet burning. But for the past year and a half I've had a severe burning knife-like stabbing pain in my lower right abdomen. If I had to pick an organ it would be the liver or the lower lobe of my right lung. It's not constant but comes in pangs every 10 seconds or so... like clockwork.

For the past few months I've had access to some Vicodin (once a month, 3-4 day supply only) and it does absolutely nothing for the pain... it's strange but it seems to make the pain even worse.

Let me start out saying that I hate going to doctors so very rarely see them. But with the pain getting so bad I forced myself outta the house and sought some medical help. Starting a year ago I saw a urologist and had bladder and kidney tests (IVP) done to try and rule out the most obvious things first. The results showed that everything was fine.

But the pain started to increase to even higher levels so last December I went to the ER and after 14 hours of hell it was determined that I had a bladder infection. No kidding... I always have a bladder infection... it's just whether it's coming or going! So I was given an IV antibiotic there and sent on my way with a 2 week prescription for Augmentin. The pain subsided somewhat but not totally. I've had the same results in the past using my standard antibiotic of choice Cipro. Whenever I took the Cipro about half the pain would cease but in a week or two it was back and even worse. Since I'm paralyzed it's very difficult to pinpoint where the pain is coming from. As Barney Fife once said "Down there where everything is real close together" seems almost as good a description as any. I assumed that all the pain just mixed together and my spot for it to manifest itself was as I described before, my lower right abdomen. Diagnosing a paralyzed person is as difficult as a veterinarian diagnosing a dog. The dog can't tell the vet where it hurts and neither can a paralyzed person... at least not accurately or with any real certainty. I see that you're familiar with those blank looks from the doctors....

A short detour here:

I have a friend who got a severe skin infection from being sunburned. They had him on all sorts of antibiotics even Vancomycin (antibiotic of last resort) in huge intravenous doses for a month using pressurized balls to dispense it with at home. He had a catheter in his arm that went into his heart for the Vancomycin injection drips. But this would only temporarily clear it up. They say that the bacteria was going into hybernation in his spine or anus area. Go figure. After two tries of the Vancomycin they finally put him on oral Zyvox. At $1,400 for a 14 day supply! Ouch. I imagine the Vancomycin was very expensive too especially in those special pressurized containers.

To get to the conclusion, a couple weeks ago I took my usual 10 - 500mg Cipro RX. And once again the pain subsided somewhat. Then realizing that I may not be staying on the Cipro long enough (it takes twice as long to cure a kidney infection as it does a bladder infection) I was going to try taking it for 20 days. But the pharmacy screwed up (or something happened) but the remaining 7 refills I had left for the Cipro was somehow voided. I gotta call them today and get it squared away. But to keep on an antibiotic regimen I decided to try something different (at this point I'd try anything!) so got my hands of 10 - 600mg of my friend's Zyvox. I took 2 each day as recommended for 5 days and after a year and a half the pain in my right side is gone. Geez...

Why is everything so difficult!

I've been getting bladder/kidneys infections for 26 years but never had this localized pain associated with them. And years ago I had really severe infections with fevers over 104*F.

Of course I tried to associate my pain with something/anything. Like does it get worse after I eat? Or after I eat certain foods. After I drink. After I drink alcohol. After I go to the bathroom. After anything.. hell, even after a change in the moon phase! It evaded me.

I've only been pain free for a few days so I'm still not 100% sure that I'm cured of the stabbing pain but I think I may be onto something. I sure hope so. I can still feel something in my right side but it isn't pain. Maybe it's my kidneys in the healing phase. I can feel a slight pulsing there... as though I'm feeling my heart beat through a tight blood vessel. It's so hard to describe things when your paralyzed!! I was really hating to wake up in the morning... those dreams were so much better than a life of constant pain!

So Angelo, maybe have the doctors order some very thorough bladder/kidney infection tests on your son. I don't know what type of history your son has with bladder or kidney infections but if he's like most of us, they're a constant concern. Personally, I'd put him on a 20 day regimen of 500mg Cipro twice a day and see what happens but ask your doctor first. He may be allergic to certain antibiotics. We all know that we shouldn't take antibiotics if we don't need them... but most of us usually have a low-level infection going on anyway. After he eats maybe the distention of his stomach is touching his kidneys and that's what's causing the pain. I'm grasping at straws here but it's something to perhaps consider.

It's hard to believe that he has diarrhea while being on Loritab and Dilaudid. They usually constipate people.

I don't live near a Spinal Cord Injury Center but I sure wish that I did. Trying to explain pain and other things to a regular doctor who is unfamiliar with our condition can be exhausting and at times so frustrating that it seems practically pointless.

I hope your son finds some relief soon Angelo. It must hard on everyone seeing him like that and for him to be going through it. Dante's inferno. Best of luck.

Hey, has anyone here ever had the cajones to climb up on one of these?



You may as well be climbing up on a gymnast's balancing beam.

And they think it can be done with the aid of a 105 pound nurse who just got back from the nail salon. Think about it. Do you really think that she's gonna risk breaking one of her newly fashioned nails just to keep you from falling onto the floor?

I just learned what dysesthetic pain is.

[Joed]

Quote

From Bob's link above:...after several years, the patient enters into the phase of Central Pain where it actually becomes their reality and the only one they can remember. Talking to these patients is like talking to someone who has been in solitary confinement for many years. They have a world of their own, a pain world. Researchers interviewing longstanding Central Pain are often misled by the fact that the patient no longer remembers in what way Central Pain is different from normal. Questioning bordering on interrogation is sometimes necessary to get patients to reflect on what they have learned to ignore and suppress. Such questioning sessions are frequently followed by periods of depression, as the patient mourns the lost self.

I have read this page before, but couldn't find it again, so thanks, Bob!

This is soooo true of central pain. And why it becomes so difficult to describe or even discern the pain. During my worst time, I became increasingly confused about what I was actually feeling...you stop trusting your body. And you're terrorized by your own body, so the normal instincts we respond to when in pain do not work...over time, you adopt a 'battered' way of thinking about it, much like the 'battered wife' syndrome.

I hope your pain is under better control, Bob. It's such a dark place to be...and lonely, as severe pain is the 'great isolator'. Prayers will be said.

[cprahl]

About a month ago I noticed severe abdominal tightness to a point I had to to take half breaths. My heart was beating fast and I felt extreme fatigue during this episode. I felt this way for about half a day then I was fine again. No fatigue, racing heart nothing. Ten I got it again and it was scary because you feel so helpless your abdomin either has this rigidness to it and you can't breath properly which scres you causing even worse painic attacks. Have no idea what this problem is other then a month later and I still have bouts with it. When it comes on I feel this tightness in my abdomen, then I have a my face flush and sweat, then any movement can cause repid heart rate and and fatugue. My profile is, 56 years old
paraplegic T-6 43 years
Scoliosis spine
Urinary ostomy

[DreamWeaver]

hey cprahl:

i'm no doctor but some of your symptoms sound like autonomic dysreflexia. perhaps something is going on with your abdomen (gallstones, ulcer, etc) causing the abdominal pain and triggering the autonomic dysreflexia. getting a medical opinion might be a good idea. my husband had one episode of autonomic dysreflexia since his SCI and it was pretty scary...