I was wondering if any other RSD patients that have it internal have had there RSD cause Gastroparesis. I'm having a rough time dealing with this problem as I am forced to work with my PCP doctor and he's tried all he can to help and my current Gastro Doctor I have for my crohns is not really a person I can confide in to help me other then issues with my crohns as he does not believe RSD is real even though my PCP has spoken in person with him about it. My gastroparesis when first diagnosed with it back in 2007 was placed as mild and it wasn't to hard to deal with it was just the idea of learning to adjust. But now its come to the point it feels like a lining of thick cement is in my stomach all the time and my nausea has increased even more on top of it all ready being bad. I've been on almost all the nausea meds out there to which none helped and I've been on Reglan and Erythromycin as well which neither have worked for my gastroparesis. I just keep losing weight and the weight I do have is from the large amounts of liquid I drink each day. I have had the NG tube before and done feedings that way but the liquid just built up in my stomach and made me even worse and even started causing me to have acid reflux. I was on the NJ tube as well but even with that the feedings were not doing as well as they wanted and the tube was making me sick as well. An RSD specialist I saw at the time told me not to have the NJ tube as it would be worthless. Luckily things kinda settled if you would call it that and I was able to get away with just my liquid weight but then within the last few weeks I've been losing a lot more even with drinking and I can't stand this nausea and cement lining. Do any of you suffering from rsd also have gastroparesis?? If so what treatment are you on, I thank you for your time and responses in advance.

Hi Lordwood,

First, I would like to say it is nice to see you back. I am a mom of a 17 year old daughter and she has been suffering for 6 years. She is vomiting 6 to 7 times per day. She is seeing a gastro on the 9th of September, not soon enough for me, but you know how it is.

I am sorry you are suffering but there are people on this site that can give you advice. I hope things get better for you.

Sandy

My daughter also has both RSD and gastroparesis. After struggling to keep the weight on for the past several years, TPN feedings have become necessary. They have also diagnosed her with immune system problems, and she is now receiving IVIG which has the potential to heal damaged nerves. Her GI specialist has seen some good results in treating gastroparesis with this treatment. It sounds to me as if your immune system may be involved as well. Isn't Crohns an autoimmune illness?

Yep crohns is an autoimmune disease. I'm currently getting IV Remicade Infusions for it. I will mention about the IVIG though. Thank you for your help.

i am sorry your daughter is in this club

i do have internal RSD and have Gasteoparesis . se weight. i dont lose weight, im heavy, wish i did lo my GI dr had me taking Protonix as well as reglan but i still have bad acid reflux. i take promethizine for nausea. i am careful not to eat past 6:30 at night and that helps so i dont get acid reflux while sleeping.
my RSD started from having gallbladder surgery 5 years ago and i just recently figured out what was wrong with me 2 months ago. i take Neurotin, fentanyl patch and a little methadone to manage the pain. i am having a flare up now and asked my dr if i could go up on the neurotin he said yes so im on 1200mgrs a day now.
i am working on getting to a pain specialist who knows how to treat RSD. i hope to see her in a few weeks.
blessings
Lori

I understand about the nausea, I think I've had it my whole adult life, maybe before, but 4 years ago I was diagnosed with gastroparesis. I couldn't eat any fat, no fiber, no meat unless it was really smushed or chopped or processed. I was the queen of carbs, 4 bites at a time. I taught myself to eat more but learned to limit my meals to about 1 cup of food. And I ate all the time to keep the pain and the nausea at bay. I took something when the nausea got debilitating I took Zofran. I have metabolism issues too. But having said all that, last Oct I wanted to loose some weight, which is difficult for me to do so I asked my dr for something. The overthecounter stuff just doesn't digest fat and I don't eat fat. He gave me Adiphex. First day, first pill, I knew my stomach was different. I went all day without eating and had no pain or nausea. And I was like a tasmanian devil of energy. Ok, that part wore off after a couple of weeks, but I'm still taking it and I haven't had a stomach ache in one year. Which is good because the accident from which I acquired the rsd would have sent me into the nausea pit for good. Now, I must add that I am ADD, and the adiphex is also given for that because it changes your fight or flight response. So my dr concluded that my stomach problems must have all been caused by overstimulation. He ain't gettin' these pills back. It is a wonderful life with no nausea, even though I have rsd in both legs and many memory issues. I don't know if this will help you, but I'm new here and saw your post and wanted to respond. I was taking aciphex for my stomach acid and it really worked well for me.

Hi GramE, How kind of you to respond and share your experience with all of us. Neurotin and Lyrica put a LOT of WEIGHT on me. It's insane. I went of gradually and didn't get my seizures back. Most foods don't taste good to me-am vegetarian now except fish. I've had RSD 15 years -full body and internal organs. Have anxiety and it sounds interesting -the adiphex I'm going to ask my Dr. about it for me. I take 2 high blood pressure meds, vicodin, lorazepam, seroquel for sleep, cymbalta -he is a neurologist, psychiatrist and pharmacologist. We are suspecting RA, so am going to see a Reumie Doc. The weight gain is hard on me emotionally and physically, I was very invoved with sports prior to RSD. I, too, have memory issues, trigeminal nerve disorder, herniated disc in neck, diverticulitis, and I think now RA. Am 61, married, wonderful married daughter who lives 5 minutes away. We live in Arizona.
Hope you find the support here that I and many of us have. Take care, loretta

Dear Loretta,
I'm not taking any of those yet, my neurologist is still optomistic about getting me 'back to normal' within the next year, but I think even he has adjusted his thinking in the last 3 weeks. I had a nerve block 9/27, which wore off 10/28 and surprised me by introducing my right foot and ankle to RSD. I haven't worked since and many days I have kindly but forcefully asked my husband to go down on the corner and see if anyone is selling morphine. Otherwise get a chainsaw and just get these things off of me.. Well last week doc gave me 2 inj in my sacroiliac and someone has turned the burner down to low and I actually have ankles. Now they are still pretty blue/red/purple, but the fire has gone out if I behave and not take too many steps. I wonder has anyone on here ever figured out what is too many?
My doc is an older orthodox Jew with a heart for people in pain. What a blessing he is. He is what I am most thankful for this thanksgiving. I have had my C4/C5 with bone spurs and pinched nerve repaired and I take 3 blood pressure pills, thyroid, Mobic for inflammation, Daracet & Vicodin and Xanax. and the Lidoderm which I unknowingly almost od'd on. Beyond dealing with the pain, the slowness of how I process everything is most difficult to deal with as I feel like I'm moving at the same speed(except walking) but everything takes twice as long on good days. I'm just beginning my 60's, have a wonderful husband who has his own health issues, 4 children w/ spouses, 10 magnificent grandchildren. My activities are limited to going to church when I can and two bible studies. That is all I've been able to manage before the shot last week. I'm in Indiana and not looking fwd to winter, but being at home is good. I am a mailman and work outside.
I have learned a lot just in the short time I've been here, and I know I am blessed by only being affected in my feet and ankles and my head(but some would say that has always been there). Thanks for your kind response, have a quiet day. pat

Hi Pat, I just saw my Dr. Monday and he told me Darvocet was taken off the market Friday due to complications of it with the heart for some people. He is a neurologist and pharmacologist and does trial studies so keeps up with the drugs. It came up, because I used to take Darvocet.
We are having a cold spell-35 at night, which causes intense pain for me. That is unusual for us in Arizona. Take care, loretta

I too suffer from crohns disease from the RSD. I throw up constantly and barely eat, my nerves also affect my heart so need BP meds to control. my bladder is also affected and shuts down if I dont get my flares undercontrol as soon as possible.

Sam