Can anyone relate or advise???

Vicc · 01-06-2008, 08:06 PM

Hi again terry,

None of the things you talked about sounded like RSD/CRPS to me. That may be because I didn't ask the right questions: Just about everyone involved with this disease agrees that it begins in one of the limbs. I disagree with just about all the experts, but I agree that it starts in the limbs; usually preceded by an injury, even if the injury went unnoticed.

Some of the major symptoms we know about are an electric-like burning pain; and limbs can feel frostbite cold at normal temperatures. There is also allodynia: a hyperpainful response to a non-painful stimulus.

Major signs can include warm, very red skin during the initial stage; followed by cold, blue skin. I'm not sure about the "take one from column "A" approach, but most lists of signs and symptoms usually require two different types of pain like I described. Changes in skin color are common but aren't essential. If they are evident, it is much easier to make the diagnosis.

If you post back to say that none of the things I just mentioned seem to stand out, I would be amazed to learn that it really is CRPS. The doc certainly seems to be treating it like CRPS, but the gabapentin has only been shown to be effective against burning pain and allodynia. If you don't have that kind of pain, gabapentin probably can't help.

I am the father of four (all grown), and part hillbilly; which means that I did the "minor doctoring" on my own. Ya know, bleeding. scrapes, lots of Epsom's Salts soaks, etc. I once took a bullet out of someone. For the serious stuff, we always took them to a teaching children't hospital (I think UCLA was one of the best, back in the 70s, I hope it still is But that won't help you).

I can't seem to find your son's name, but I have to tell you that if you answer no to those last questions, you need to take him to a teaching hospital. If radiology shows a spot on his stomach wall, something may be wrong, but it probably isn't CRPS. If it is causing all the pain and weakness, someone needs to find out for sure what the Hell it is. Guessing it might be CRPS when there aren't any of the major symptoms sounds like a really bad idea.

I will be happy to regale anyone with stories about why I love teaching hospitals, but only if someone clicks my email link and asks me to.

That's about all I have to say, except I pray it isn't CRPS, and I pray that a doc will soon learn what is really going on and then get to work on fixing it...Vic

Desi · 01-06-2008, 09:48 PM

Quote:

Originally Posted by terry

Hi Vic,
Thank you so much for your reply and interest in my son. Here is some back ground on my son - a year ago December he started being fatigued after activities - so much that last Christmas vacation he was too tired to play with any of his friends - I then started having blood tests done because I thought maybe he had mono or something. The tiredness continued and during the summer he started complaining of stomach pains - they would only last a moment and then they would disappear. We thought maybe he was allergic to milk so we cut that out - but that didn't appear to do anything. He continued with the tiredness throughout the summer and then in Sept. he went paint balling with some friends. The next day he was exhausted. On Tuesday night of that week he complained of a sore throat and had a very swollen gland - the next day the throat felt better but the stomach pains started and since then they have never stopped. He was treated for possible constipation - not completely emptying the bowel, he's had an upper GI, and an upper and lower endoscopy with biopsies - all normal. So I guess through the process of elimination they diagnosed him with this. It is in only one spot of his stomach - it is always at a pain level of 6 and he has intermittent bouts of burning pains that rate a pain level of 8 or 9. He also gets another distressing pain, but he is unable to describe it - it too is level 8 or 9.

Since Sept. he has been fatigued and in pain with some weakness, but lately the weakness is bad - he doesn't have the energy to walk. He has just started taking neurontin 900 mg per day - I have to say, since he is taking it, he falls asleep faster - it had been taking him up to 2 or 3 hours to fall asleep because of the pain.

That's our story - I am happy to hear anything you have to offer. To our knowledge there was no injury - just possible constipation.

Thank you for taking the time to speak with me. Have a good day.

Terry

Hi there Terry! My name is Diane. I have RSD in my wrist, upper arm, shoulder, neck.(due from carpal tunnal surgery)

Ok.. you mentioned your son went paint balling?? did he wear protective "gear" while shooting these high power paint balls? was he hit at all in the stomach? You also mentioned "ONE" spot on his stomach. As all the upper GI and all upper and lower endoscopy with the biopsies being normal, I am guessing that the medication right now is making him tired. That neurontin is a butt sleeper medication!! So, he is taking 900 mg. of the Neurontion a day? maybe this is just too much for him? how much does he weigh? I also have never heard of RSD/CRPS in the stomach area!! Hmmm..If he is really active outdoors(Especially that day, playing paintball) I would keep him close by, keep a close watch on him, and if he gets worse, please see a stomach specialist. Nice to meet you, your son will be in my prayeers!~Love, Desi

dreambeliever128 · 01-06-2008, 10:36 PM

When you say he has a burning in one spot in his stomach, one thing comes to mind with me is maybe Peptic Ulcer Disease. If he has an Ulcer then he would have that burning in one spot. It dosn't always show up in test. My experience with test being done, I have seen more negative then positive when they should be just the opposite.

The food would calm down the burning and if his stomach is full at night then he wouldn't have the burning. I take prevacid for my GERD and PUD. I can stay off of it for a few days and my stomach and esophogus is a mess. I had so many test when I first started with my illnesses and nothing showed anything until it was worse. I have had test that show one thing and then when they go back it shows nothing and visa versa.

This is just a thought on the PUD. If he has an ulcer or the starting of one then he would have the burning.

I hope he doesn't have the RSD. I hate to see kids go through what Ali and others on here have went through.

Good luck to you and your son on getting the answers soon.

Ada

wakegirl · 01-07-2008, 12:36 AM

hey terry
i just wanted to let you know that while my crps began following a trauma (and that trauma can range from bumping into something to a fracture), i experienced crps symptoms in my stomach. the problems started in my cervicle spine following the placement of a spinal cord stimulator, initially i couldnt swallow. after seeing the ENT specialist, and only some minor problems wit the nerves in my throat the decision was made to implant a feeding tube. the feeding tube regulated my eating behaviors but i had a significant crps response to the tube. i found the less i tried to move around the better. we actually taped the tube against my flesh so there was no where for it to move.
based solely on the info you have provided on the forum i would ask your doc to send you to a neurologist with crps experience, and if they cant help you might want to see if you can find a GI doc or a trauma surgeon who has experience with crps. there are a lot of doctors out there who claim to be able to handle everything that comes up within their specialty crps particularly in small children or in random areas of the body make it extremely hard to identify and resolve.
good luck
you have come to the right place for peer info...when i was first diagnosed at age 12 most doctors had no idea what rsd was and those who had heard of it didnt know enough about it to impliment a rehab plan.

tayla4me · 01-07-2008, 06:46 AM

Hello Terry,

Like the others here I am very surprised his diagnosis is CRPS as his symptoms are quite atypical.

There are a multitude of problems that can cause his abdo pain and I really hope you can get on track with someone who is willing to do whatever tests it takes to make a proper diagnosis.
His weakness in his legs may well be just from the fact he has become so out of condition from his chronic illness
It may well be also a reaction to his medications. They are obviously not helping do anything for his pain

I wish you luck with your son, please let us know how you go.
Take care
Tayla

ali12 · 01-07-2008, 07:04 AM

Terry,
These links might help you. I had a look to see if you could get RSD/CRPS in the stomach area and "yes you can"

http://www.rsdhope.org/Showpage.asp?...1&PGCT_ID=4409 This is a story about 1 girl that as RSD in her limbs and 1 girl that as RSD in her abdomen

http://princesearch.spaces.live.com/...3969!155.entry
A girl/women with RSD in her feet, hands and abdomen

I hope these help
Thank you for your kind words
Love
Alison

terry · 01-07-2008, 08:45 AM

Hi Vicc,
I like your "hillbilly remedies" I wish you had one for me!! My son, Jesse, is being seen at the Children's Hospital in Philadelphia by Dr. Sherry - he is suppose to be one of the best and people come from all over the country to see him. I guess we'll find out tomorrow - we have an appt. at 10:00 - I can't wait.

I'll let you know what he says. Thanks again for your kind words - how are you doing??

terry

terry · 01-07-2008, 08:50 AM

Hi Desi,
Thank you for taking the time to respond! My son, Jesse, is 63 pounds - he's a little guy! Your comment about paint balling is very interesting - I never related his stomach pain to that - he may have very well been shot in the stomach - he's still sleeping - I'll ask him when he wakes up. That would make a lot of sense - because 4 days later is when the constant pain began. Prior to that, it was just pain every now and then and only for a second or two. He did have the fatigue before, but he would feel rested if he took a break - not now - he's always tired.

Thanks again for you help - I really appreciate it.

How are you doing??

terry

terry · 01-07-2008, 08:51 AM

Hi Tayla,
We have an appt. tomorrow with a specialist - I'll keep you posted! How are you??

terry

terry · 01-07-2008, 08:54 AM

Hi Wakegirl,

Thanks for sharing - I'm sorry for all the trouble you've had - it's really not fair for something like this to happen to children - I wish I had it instead.

Have a good day.
terry

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