Hi Terry!
My name is Linnie and I was first diagnosed with RSD when I was 12 as well. I went to PT for a long time, and my symptoms kept getting worse. No one would listen to me (I was literally tied to the exercise bike at one point) and wrote me off as being whiny. Then, like some intervention by the universe, my PT went on vacation and I got a new PT. She finally listened. But my RSD was completely exacerbated. It wouldn't be as bad all these years later if someone had just listened. And no ice!

I just want to beg you to listen to your son while he is undergoing this intensive PT. With RSD, the phrase "no pain no gain" is most often a bunch of BS and is what got us here in the first place. I know how traumatic it was to be in so much pain but nobody listened to me because it was "for my own good". And at that age I was desperate to do anything to make it all stop so that my parents would stop worrying. Just keep an eye out- PT can be damaging too. Hopefully it works for you guys.

Also, sometimes neurontin and clonidine have to be continued for quite some time before they become effective, and they can help to prevent spread. Just something to think about!
Linnie

Hi Linne,

Thank you so much for your advice - I will definitely listen to my son when he starts PT. As far as the meds, he wasn't on neurontin all that long, and the doctor in charge of the PT program doesn't believe in meds. If this doesn't work, I guess we will try meds again.
Where did your RSD start? It is hard to find someone with it in their stomach - I just want my son to be better - i feel so bad for him.

Thanks again Linnie and if you ever need to talk, I am here.

terry

Hi Terry,
Good luck with the therapy program. My daughter had abdominal RSD for 1-1/2 years and also participated in intense p.t.. She gained function through this program but not pain relief. We later learned of hyperbaric oxygen treatments, with that finally stopping her pain. I would so encourage you to try these treatments if he does respond to p.t. alone. Wishing you and your son the very best!!!
jenno

Hi Jenno,

I would love to talk with you more about your daughters symptoms, etc. Jesse has constant stomach pains with the burning sensation and stabbing. His pain is a constant 7 but with episodes of 10. He is also nauseous, has headaches, body aches, and constant fatigue. Does this sound similar to how your daughter felt?

We struggle to get him to school everyday - it's very hard. He would like to be homeschooled, but I want him to be with his friends and to keep getting up and out for the day. I feel like the meanest mother in the world.

I'm not sure how the physical therapy is going to work. I would like to learn more about the oxygen treatments. Where was your daughter treated? We live in the Philadelphia area, but are willing to travel anywhere to get him help.

I would appreciate any advice you have to offer. Thank you for your support. I hope your daughter continues to be well.

terry

Hi again Terry,
I was very happy to hear back from you. I had seen your post on another website a few weeks ago and tried to make contact there but had not succeeded. It is so hard to find information about abdominal RSD; I know because we searched and searched for hope and answers. I am new to this site so I am not familiar with the rules etc. I noticed that there is a place to respond and a place to post a response. I am not sure what the best way is to communicate; but I would very much like to think that Sarah's experiences and the lessons we have learned might possibly benefit your son. I am in a bit of a hurry right now, but will check back later. Let me know if you are aware of the best way to correspond. Talk with you soon!
jenno

Hi Jenno,
Thanks for writing me back! I sent you a personal message, but you can email me directly at warburton48@msn.com

If it doesn't show my email, send me a personal message by clicking on my name to the left and click on to send a private message. To check for a private message look at the top right of the screen and it will tell you if you have one - then just click it!

Look ing forward to hearing from you again.

Terry

Terry,
I am new to this. My daughter was just diagnosed last week with with r.s.d. in her hand. To make a long story short I now believe that this is also what is wrong with her stomach. She has had problems for over a year now and just spent two weeks in and out of the hospital. After many Drs they came up with abdominal migranes and the catch all I.B.S. Can you give me any info on abdominal r.s.d. It is so hard to find info on it.
Thanks
Jonee

Hi Jonee,

Please check your private messages.

Jeanne

jonee

oh, my gosh!

this is the very first time I have ever heard of another person being diagnosed with abdominal migrane.

Doctors for years insisted I had IBS. Treatments did not work. Then, a family doctor had me keep a log of how I felt when I had "episodes" and an internist looked it over, and came up with this "abdominal migrane"... at the first sign of an episode I took midrin, and it was a cure! Wow! Now, doctors still look at me like I am nuts when I say abdominal migrane. I had problems from the time I was 7-8 years old. Now that I am 50, I no longer have problems.

How odd, I have never heard of it in anyone else!

hi terry
i was 16 when i got rsd it started in my rt shoulder neck and arm. and now is head to toe and internal. there wasnt such a thing 11 yrs ago for kids with rsd at all. pt didnt work for me at all. my rsd spread to all four limbs in a matter of month.

has your son had any blocks or anything else done for his rsd?
i know that it was said meds dont work for kids and on my end that is wrong. i didnt ever take pain meds till i was 20+ but i was orginal on neurtion and remaron for sleep .then i had indwelling catherder that delivered for 1 wk of colondine and buvupicane (sp) then they took it out and did it again while i had these treatments i did have pt 2x's a day while inpatient.

but like someone else said please listen your son!!!he is goin to know when enough is enough or its too much.
the key to rsd is finding a doctor that really understands about rsd and the complexs that come from it. i have been through so many docs even mayo clinic and only 4 of them have ever really treated me and helped

i really hope that this will help your son
you can PM if you have any other questions
carrie