[wswells]

hello, i am new to this site, i was wondering if anyone out there has any information about having rsd in the abdomin and in the digestive tract. i have had rsd since 1986 so i know the havoc it can have on your body, I have what the Dr's say total body rsd.

[dreambeliever128]

I have intestinal problems. I was put on Mitformin to get my system to start working again. My whole system was shutting down. I also have pain in my right side due to what 2 Drs. have said was the RSD. I also have the IBS, GERD, and Metabolic syndrome and Motility related Syndrome. I don't know if all of this is from the RSD but I never had any of this until RSD.

Glad to see you found us. Stick around.

Ada

[wswells]

Originally Posted by dreambeliever128

I have intestinal problems. I was put on Mitformin to get my system to start working again. My whole system was shutting down. I also have pain in my right side due to what 2 Drs. have said was the RSD. I also have the IBS, GERD, and Metabolic syndrome and Motility related Syndrome. I don't know if all of this is from the RSD but I never had any of this until RSD.

Glad to see you found us. Stick around.

Ada

Ada,

thank you for the info. your symtoms seem to be the same as mine but the dr's dont seem to know what to do with stomach problems. I'm on alot of medication for my heart [blood pressure] and rsd pain. Their answer when my stomach really acts up is to put me in the hospital for more tests, I AM SO DONE WITH THAT!

Thanks Wendy

[dreambeliever128]

My system started shutting down about 2 years ago. My PCP put me on the Mitformin which is used for diabetes which I don't have. I went to two gastros which diagnosed me with some of the problems I have but put me on meds that made it worse. I don't put much faith in Drs. much anymore. Thankfully I have my PCP who has worked for 19 years to keep me going. He figures out what the specialist can't. They ran all kinds of test on me in their office. One Dr. put me on a med that he admitted could make me worse and it did. Like I need any help with that.

I hope you do get some answers soon. It is very frustrating to go to these Specialist only to find out they don't have any answers either.

Ada

[loretta]

Originally Posted by wswells

hello, i am new to this site, i was wondering if anyone out there has any information about having rsd in the abdomin and in the digestive tract. i have had rsd since 1986 so i know the havoc it can have on your body, I have what the Dr's say total body rsd.

Hi Wendy, Welcome, you have had this a long time. me 15 years and full body or generalized.
I also have internal RSD and bowel problems according to last colonoscopy. I take a herbal tea, called dieters tea to help with keeping my digestive tract active. the pain meds slow everything down.
This is a wonder group of friends, knowledgable and compassionate and kind. Hope you stay with us. One of your new friends, loretta with big hugs

[bobber]

My wife looked up on the rsdrx.com puzzle last nite for me,,Gerd and digestive problems walk hand and hand with RSD,,I dont think all patients have it,but I do,,And like ada,,I have upper right quardant pain near the liver ,gallbadder area,,,RSd...refulx acid and the lisy goes on,,If I watch what I eat or am not in a terrible flare ,my digestive track calms down,,my wife read on that site to stay away from coffee because its acidic..but it said tea was ok,,,,,,,,,good to see you found us too,,,bobber

[keep smilin]

Originally Posted by bobber

My wife looked up on the rsdrx.com puzzle last nite for me,,Gerd and digestive problems walk hand and hand with RSD,,I dont think all patients have it,but I do,,And like ada,,I have upper right quardant pain near the liver ,gallbadder area,,,RSd...refulx acid and the lisy goes on,,If I watch what I eat or am not in a terrible flare ,my digestive track calms down,,my wife read on that site to stay away from coffee because its acidic..but it said tea was ok,,,,,,,,,good to see you found us too,,,bobber

I just learned last week with my visit that yes.. throat and stomach can be invloved...stop digesting food and cause us to choke..along with other internal parts to stop functioning.. silly RSD..no sense of humor!! Mine is considered whole body now and possible internal involvement... scary stuff...I know but we have eachother!! I am thankful for that more everyday!!

Kathy...plz..keep smilin!!

[Wilbyfree]

Originally Posted by keep smilin

I just learned last week with my visit that yes.. throat and stomach can be invloved...stop digesting food and cause us to choke..along with other internal parts to stop functioning.. silly RSD..no sense of humor!! Mine is considered whole body now and possible internal involvement... scary stuff...I know but we have eachother!! I am thankful for that more everyday!!

Kathy...plz..keep smilin!!

Hi KS, I just need some help figuring this out. I do not understand the fullbody nor the internal organ involvement. How do they know that you have this? What does full body RSD feel like? I have celiac disease (blood test confirmed this) the exact same time I was diagnosed with Causalgia. I too have constant pain in the right side of my stomach below the rib and of course pain in both lower extremities and recently my hip and lower back have decided to join in on the party. But I am curious how they can diagnose the internal involvement? I mean that is quite scary if your organs can begin to shut down and they have nothing to back this.... is there a test or something, like a CT scan, something to show discrepencies in this area? This is beginning to sound more and more like the mother ship of Lupus! I am just concerned if anyone has any information on the internal involvement and... are doctors ready to treat this when it gets to this stage.

I stay on a strict gluten free diet and still have IBS and severe burning pain in my stomach. So any input would be greatly appreciated. I do not complain too much, I and the doctor just assume it is the celiac...but now that I think about it, I follow a strict diet...never cheat.

Thanks

Jeanie

[keep smilin]

Originally Posted by Wilbyfree

Hi KS, I just need some help figuring this out. I do not understand the fullbody nor the internal organ involvement. How do they know that you have this? What does full body RSD feel like? I have celiac disease (blood test confirmed this) the exact same time I was diagnosed with Causalgia. I too have constant pain in the right side of my stomach below the rib and of course pain in both lower extremities and recently my hip and lower back have decided to join in on the party. But I am curious how they can diagnose the internal involvement? I mean that is quite scary if your organs can begin to shut down and they have nothing to back this.... is there a test or something, like a CT scan, something to show discrepencies in this area? This is beginning to sound more and more like the mother ship of Lupus! I am just concerned if anyone has any information on the internal involvement and... are doctors ready to treat this when it gets to this stage.

I stay on a strict gluten free diet and still have IBS and severe burning pain in my stomach. So any input would be greatly appreciated. I do not complain too much, I and the doctor just assume it is the celiac...but now that I think about it, I follow a strict diet...never cheat.

Thanks

Jeanie

Hi Jeanie..

How is you tonight my friend?? I hope i can help to clear up your questions..whole body refers to your outside as in all limbs along with your back...mine is in my pelvis now as well..being involved..now internal..I believe you will have much the same symptoms as you do outside..as in burning ..mine they were able to follow my brancial plexis down around the left side of my chest wall in toward the center of my body..touching areas I never thought did hurt..these areas hurt terribly..deep pain hurt..we know that feeling..when RSD gets bad enough in the inside it can actually haul its functioning..changes in digestion, or bowel habits..ect.. Iwho else out there has the broncial plexis route too?? I know of a few I think...

Jeanie..I hope this helped you..mostly symptomatic rather than a precise test..RSD pain is RSD pain..you'll know it inside and out...

Hugz my friend and have a good sleep...happy thoughts in your heart..you can't go wrong!! We have great people here..

Kathy

[wswells]

Originally Posted by loretta

Hi Wendy, Welcome, you have had this a long time. me 15 years and full body or generalized.
I also have internal RSD and bowel problems according to last colonoscopy. I take a herbal tea, called dieters tea to help with keeping my digestive tract active. the pain meds slow everything down.
This is a wonder group of friends, knowledgable and compassionate and kind. Hope you stay with us. One of your new friends, loretta with big hugs

Hi Loretta, Thanks for your response. I also had a colonoscopy, and an endoscopy and both showed erosion of the esophogus, and the colon but what I don't get is they see the problems but don't have the answers! I know that probably most of the meds even the blood pressure meds slow everything down but I have to take them to keep me functioning. My Dr. has me on a muscle relaxant, and when I take it it does help me with the spasms all over my body and I just realized about a year ago that they were also helping with the pain and spasms in my intestines, but you can only take x amount of those because they too slow things down. IS this ever going to end , or just keep annoying us. After having this for so long I just try to blow things off as whatever,I don't even bother telling my family or friends [who are supportive of my situation] about the new adventures of RSD, because I just think it's all just old for them to have to listen to.Do you ever think that it just gets old? Or that they just have listened to it for so long? Thanks again new friend. hope to hear from you, Wendy