Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 03-22-2010, 09:38 AM #1
wswells wswells is offline
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Default rsd abdomal and ibs

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.
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Old 03-22-2010, 10:55 AM #2
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Default Hi,

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
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Old 03-22-2010, 12:04 PM #3
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Default rsd and abdominal pain

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Originally Posted by dreambeliever128 View Post
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
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Old 03-22-2010, 12:25 PM #4
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Default Hi Wendy,

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
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Old 03-22-2010, 02:52 PM #5
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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
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Old 03-22-2010, 03:47 PM #6
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Quote:
Originally Posted by bobber View Post
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!!
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Old 03-22-2010, 02:52 PM #7
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Quote:
Originally Posted by wswells View Post
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
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Old 03-23-2010, 09:29 AM #8
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Quote:
Originally Posted by loretta View Post
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
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Old 03-23-2010, 07:00 PM #9
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My daughter was first diagnosed with RSD in 1997 at the age of 10 following a broken wrist. It has become a series of flares with skin lesions covering her entire body that burn, erupt and bleed. IN addition, she has internal involvement as well including the GI tract with Gastro Paresis and lesions in her throat and GI. She has lung involvment and kidney as well, with constant blood in her urine. Looking for a great RSD doc currently as most dont know what to do at this point. Nerve blocks worked in 1997 but they dont know what to do at this point. Dr Schwartzman not scheduling appts until 2012 and we cant wait. Anyone have any suggestions? Glad you are all here
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Old 03-23-2010, 08:15 PM #10
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"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?"

I was just talking about this with my BF who lives in NW Iowa(I live in CA now). I finally told her a few weeks ago about these horrible flares I have been having. And I said if you have noticed that for a long long time I haven't actually talked much about having RSD & pain etc. And she said I know & she had been wondering if it was gone or what was going on. I had told her I finally figured out that there is only just so much to be said & then it gets old, real fast & when nothing new is happening what is the point. Also having good pain control has helped & that I have had for the most part ever since the end of 2005. So I agree, it has to get old to them because it sure as heck gets old for me. And there is only so much to be said about it...............

I had IBS way before I ever had RSD. In fact I have had probs since I was a kid. Constipated all the time & then after gal bladder removal in 1981 loose to diarreha........... Now due to years on pain meds back to constipation. Thank Goodness for Miralax. or it might take dynamite *LOL* I also had heart burn off & on for years & years........I took Nexium for years now have been off of it for 2 yrs almost. I use Tums once in a while is all now.

Debby
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