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

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

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.

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

i am a new memebr and just wrote a bit on my extended biography which i thought kind of makde a link with your son's case. i too must enter into the diagnosis debate in terms of viscera and crps - thing is rsd/crps is still so unknown about and knew things and connections will be found and many of the processes may be the closest way to deacribe pain labelled under a variety of syndromes - there may be variants of complex regional pain syndrome.

i have continually had the problem of being hard to classify because my pain began with a UTI, but seemed to evolve into a kind of centralised neuropathic pain with autonomic disturbance. i have been diagnosed in america with a kind of crps but have never met anyone with the same kind of past story to me. I now have no bladder and a bag but have phantom bladder urgency continually still as well as deep searing burning pain where my bladder was, in my lower back, across my buttocks and pelvis.

other areas of my body also burn but I my lower legs and feet are like they are in ice all the time and thermography showed they were very cold. i have burning, mottled palms, poor temperature control and sweating in general, pain and soreness of my face and scalp and am exhausted from being too uncomfortable to sleep! i get a lot of headaches and tingling and have sensory changes which feel both numb and hypersensitive in my lower legs. i have tried almost every drug i think and have had endless nerve blocks to no avail and a failed attempt to relieve pain with a spinal cord stimulator.

have sought help from doctors here and in florida in the past. have tried endless alternative therapies and as a herbalist use herbs to support but they don't relieve the level of pain. am desperate and seeking info also on the ketamine comas trials and trying to seek advice from experts in america. Nearly 12 years on and with all the determination to get a first class degree and MPhil studentship afer years house and 'bathroom' bound (pre-bladder removal) and I feel I am worse if anything and don't know how to bear each minute and continue a life with the pain and lack of ever having respite. i feel really isolated in terms of my symptom profile and my symptoms may be seen as a kind of interstitial cystitis by some except there is no organ and the centralised changes are obvious. I know there are some suggestions that some kinds of interstitial cystitis are a form of CRPS. to an extent i don't care but it just makes me more lonely and would also love to here if anyone has this kind of burning in their trunk, back, viscera or similarities with my story to share.

i have been so positive and independnet the last few years trying to ignore and distract from the pain but it just isn't sustainable for me anymore and i don't know how to go on making so much mental effort etc to simply endure more pain despite all i cherish and love. i am terrified what is going to happen to me as each day feels so hard and i can cope with and do less and less as the pain and various symptoms all over seem to worsen.

i hope that something works for your son and you get some compassionate and openminded support from doctors.
bestest wishes,
SarahB

Hi Sarah,
Thank you so much for contacting me and wishing my son well. I am sorry for all that you have gone through and are still going through. Have you contacted Dr. Schwartzman in Philadelphia? I think he is doing a ketamine study - I think he is with Drexel University - I know he also sends people to Germany to get the Ketamine Coma - this might be something you'll want to look into. I saw information somewhere on Neurotalk - I'm just not sure where - you might want to start a thread asking about it - I'm sure somebody will have more information.

My son has recently been diagnosed with Reflex Neurovascular Dystophy. We have stopped all medication and are on the waiting list for an intense physical therapy program at Children's Hospital of Philadelphia. I finally got him back to school - but it is a struggle on Monday's after having the weekend to sleep in. I hate forcing him to go, but the doctors feel it is a good distraction. I am just happy to have him be with his friends again.

I wish you well.

Terry

Thank