anyone here have gastroperesis?

Discussion in 'Fibromyalgia Main Forum' started by GinnyB, Feb 15, 2008.

  1. GinnyB

    GinnyB New Member

    I mean does anyone else have gastroperesis. I know I do. It seems to be connected with every disease I'd ever heard of and a few that I hadn't. Diabetes is the most likely cause, but that I don't have.

    Basically, my stomach's paralyzed. It doesn't contract the way it's supposed to to move the food into my intestine. They have all kinds of treatment for it, but none of them seem to work very well. You can get a pacemaker put on your stomach, but my doctor doesn't think I'm a good candidate for that. They use feeding tubes, too--boy, I'm really looking forward to that!

    IBS is another possible cause. Possible. Like everything else we get no one seems to be sure of the cause. I started out with poison ivy, then anemia from gastrointestinal bleeding, then collagenous colitis, hypertension, neurally mediated hypotension, and now kidney problems--can't always make it to the john in time.

    I have sore gums and rough patches on the inside of my cheeks, my gums, lips. Also have a sore throat. Ache all over. My rheumy says maybe I have Parkinson's, maybe I had a stroke on Christmas (I couldn't stand up, had to crawl.)

    What I think's happening is that the upper part of my stomach isn't contracting, so the food's backing up into my esophagus and from there to my heart cavity making my heart beat harder so my blood pressure goes up and I get dizzy and short of breath. Just how all this is connected to the kidney I'm not sure, but when I called the doctor this morning his nurse told me, "I don't care if the time doesn't suit, get in here tomorrow."

    I'm scared to death. Does anyone else have this disease?

    GinnyB
  2. BxGirl

    BxGirl New Member

    I have gastroparesis. When I eat too much I experience a lot of pain on the left side of my body, below my left breast. The pain can be horrible at times! I was told to eat small meals a few times a day. Not to eat too much at one time. I also have IBS and microscopic colitis, but I don't see how they're related to this. As long as I don't eat too much at one time I'm okay.
  3. rachelle01

    rachelle01 New Member

    I havent been formally diagnosed, but I know I have this.
    I have sjogrens syndrome and lupus and always had problems swallowing, but it wasnt until after my hysterectomy, that I noticed a huge change. My food doesnt want to move at all and I have terrible bloating, gas etc. Its just awful.
    I was reading that hormones have alot to do with the motility of the stomach. I know they have only a few medications that might help, Reglan is one of them, but it can cause nasty side effects so I cant take it.
    I also get super dizzy with the low blood pressure thing?
  4. jess

    jess New Member

    Hi Ginnyb, I was just diagnosed with this about 2 months ago. the weird thing is that the gastric emptying test was within normal limits. However, during an endoscopy my Dr. said food was still in the stomach. My Dr. says I have gastroparesis just not all the time. It does come and go. I have not been given meds for this as my Dr. feels it can make things worse sometimes.
    I don't have much fiber so I juice my veggies and fruits to get the nutrients. I don't eat any red meat and try not to eat dairy and sugar. Basically, I am always hungry but can't eat much. I need fiber because of diverticular disease but I can't take the pain when I eat it so I don't.
    I think since most of my muscles are affected this is just one more effect of whatever it is I have. There is a good chance I have LYme. It has been going on for years. I hope you get some good help for this soon, Jess
  5. I have been diagnosed with it and basically all the drs tell you is eat smalls meals or you will feel full. Well guess what I don't even have to eat and I feel full, bloated and in pain. Then thats all they tell you and off you go miserable. I don't think the drs. know much about this dd. Fortunately, knock wood, mine comes and goes, when its here its for months then I get a break for a short time. All I know is what I researched on the web.

    I do know that fiber is the worst thing for it. Zelnorm helped alot but then they took that off the market. Reglan all it does is give me horrid diarreah , the dr says thats what its supposed to do!
  6. dononagin

    dononagin New Member

    I have colitis and diviriticulitis as well as a hiatel hernia. My doc gives me Reglan for motility. I know it works for the intestines, I wonder if it works for your stomuch as well. Also, Donatal for intestinal spasms.

    I don't blame you for being scared Ginny. I would be to if my Doc told me that. Please let us know what happens with the doctors.

    I'll be keeping you in my thoughts and prayers,
    Dona
  7. lca

    lca New Member

    There are some very helpful previous posts on Gastroparesis, mostly started by "Fibrobutterfly".

    Just type in Gastroparesis in the search box on the top of this page under "title" and click Go!

    Unfortunately, a lot of us here are old experts on this subject. I suffered for four plus years before starting on the conservative approach of probiotics and digestive enzymes daily. Doing so much better now. By keeping up this simple regimen, I hardly notice any symptoms at all. See Doctors, what do you know!

    That pacemaker thing scared me to death, and I refused to beleive it was the only option. Please read was has helped others on this board.

    Good luck to you, you're not alone in this.

    Linda
    [This Message was Edited on 02/16/2008]
  8. Sheila1366

    Sheila1366 New Member

    There is a support group with yahoo you can join.

    I had the gastric emptying test and endoscopy.All pointed to gastroparesis.

    I tried the reglan but had a bad reaction to it.Got very aggitated and depressed.Meds. to treat gastroparesis can have some serious side affects.

    I have had a few days when I was not sick to my stomach just recently and ate like normal.Now I can't eat.Bloated awful,pain and sick to my stomach.

    Gastroparesis can get serious and require a feeding tube and a pacemaker.And unfortunately we are kinda left out there on our own to treat ourselves.

    Small meals,liguids like broths,soups,Ensure,cracker and soda on really bad days.Low fiber diets.Well cook veggies and low fat meals.I was told 8 meals a day.But like I said I have been eating normal,feeling bloated all the while and ignoring the feeling of being full.But just wanted to eat for the sake of eating.

    I was losing weight almost everyday.Now I am back to fasting and getting my stomach back to where it is not over stuffed and not sick.

    But I have found even on an empty stomach I can have pain.But that is usually if I have stuffed myself.

    It is a balancing act.Takes some getting use to.

    Check out the support group on Yahoo.

    Sheila
  9. GinnyB

    GinnyB New Member

    Thank you all for showing me you just have to live with it, because I was really afraid I wouldn't.

    I did find a book that was helpful--"The Official Patient's SourceBook on Gastroperesis" written by two doctors both named Parker. I got it at Barnes and Noble for $28.95. It explains gastroperesis and then gives you all these websites where you can get reliable information, not just what you read in the different magazines.

    It guides you to different places off the web too, which is helpful to follow up what you read on the web. Seems no one place tells it all.

    I haven't checked out any of the websites yet. Sometimes I've just had enough and want to forget it all for awhile.

    GinnyB


  10. I forgot to add my dr. gave me amitza, it helped , although my gastro dr. poo poo'ed it, saying gastroparesis was a stomach problem not a bowel problem. But zelnorm helped. However I don't need it all the time. knock wood.
  11. ICA/Linda you said "I suffered for four plus years before starting on the conservative approach of probiotics and digestive enzymes daily. Doing so much better now. By keeping up this simple regimen, I hardly notice any symptoms at all. "

    I was wondering what type of digestive enzymes you take. Drs. aren't any help so I am thinking of trying D. enzymes. Have you been actually diagnosed with gastroparesis ?

    Also I see in your profile your interested in Interior design (in your dreams), me too!
  12. GinnyB

    GinnyB New Member

    Along with entocort, my gastro doctor told me to take 2 Vdigest (think I got the name right, but if you're interested I'll check tomorrow) before every meal and to eat 3 cups of yogurt every day. I have bacterial overlay so bad it's actually up in my stomach and even a little in my esophagus along with the thrush. He also told me to drink Coke (in my case, diet Coke!) daily. Has to be Coke, not Pepsi or any other cola. Seems there's something in Coke that helps the stomach. I hadn't heard of it for years, but when my kids were little the doctor used to prescribe the undiluted coke syrup for upset stomachs. It worked, too. The problem I'm having is that by the time I eat all the yogurt and coke I'm too full for much of anything else. But maybe that's my doctor's idea of a weight-loss diet!

    Hope this helps.

    GinnyB bump

  13. Ginny interesting the dr. told you to eat 3 cups of yogurt a day as I wondered if I had a bad case of yeast. I mean if as women we can get vaginal yeast all the time, can't it affect your stomach/intestines? AND everytime I take antibiotics my stomach acts up worse. But the gastro dr. said no!
  14. lca

    lca New Member

    Oh my! I just reread my post on how my Gastroparesis was doing better lately, and this morning, sure enough those old awful pains in the upper abs were back.

    This is one of those problems I guess really never completely goes away. I have been keeping it under control with Rexall Multi Enzyme Formula, 200 tablets for about $6.00 from Wal-Mart. I take 2 tablets with meals three times a day.

    Yes, I was diagnosed with Gastroparesis after a gastric emptying test. They said 75% of my food was remaining in my stomach after a certain amount of time ( one hour or more?)

    Just a thought, my doctor just switched me from Requip to Mirapex for Restless Leg Syndrome two weeks ago. My Gatroenterologist said these medications are notorious for slow stomach emptying. I don't know, maybe it's the Mirapex.

    As for the interior decorating, I always wanted to back to school for it, but couldn't leave the house. I opted for those correspondence courses and actually did very well. All I have is a nice little framed diploma on my wall. It makes you think, how many of us had crushed dreams and wasted talent because of this disease?

    I enjoy reading profiles and find many of us non-workers or homebound probably aching to get out and do something.
  15. jess

    jess New Member

    HI, this is for the person who wondered what caused gastroparesis. I'm no Dr but from what I have read Diabetes is usually the main cause. However, it can also be caused from abdominal surgery, and viral infection. This last one hits home for me. Oh, I did also read that EBV can be a cause as well as Lyme disease. Sometimes it is idiopathic(no known cause) I think for a lot of us viral might be our cause. I believe it is for me. Also, I often think that since I have muscle spasms any muscle can be involved, like the heart and stomach muscles. Jess
  16. lca

    lca New Member

    Jess, you just explained it the way no doctor could for years. All along I would try to gently suggest to them I think it all stems back to the Fibromyalgia. Their answer is always, if it's not diabetes it must be idiopathic. Well, in my book idiopathic is still something.

    It just makes sense if our muscles are not working properly, the stomach being one large muscle, naturally the food is not being moved along to where it needs to go in a reasonable and comfortable amount of time.

    I've about given up on Gastroenterologists.

    What we need is a well informed Fibromyalgia doctor who understands our muscle weakness to be able to figure out a solution to this. Am I just wishful thinking?
  17. Jess you are right, my gastro dr asked if I had a virus before this started as gastroparesis can be caused following a virus. However I have had alot of viruses over the years so???? My gastroparesis calms down for a month or so and then like now OMG ITS BACK! I wouldn't wish this on anyone.
  18. Timaca

    Timaca New Member

    Have you been tested for viruses? The sores in your mouth and sore throat could be a result of EBV. Enterovirus can cause GI problems.

    Timaca
  19. choppers4

    choppers4 New Member

    I have a very close friend that has this disorder. She is a Diabetic and also has Fibromyalgia and Epilepsy. She told me that her doctor told her it was caused by Diabetes. I am just wondering if because she has Diabetes thew doctors just "assume" that is the cause of Gastroparesis and not a virus.

    I will suggest the virus theory to her. I have seen her have attacks and she has a lot of pain as well as she cannot keep anything down. I feel for anyone that has this disorder and wish you all the best.

    Choppers
  20. Yes I was told that diabetes is the main cause for it, but thankfully I don't have that. It is the worst thing you can imagine, its bad enough you have pain with fibro and other issues, but not being able to eat and suffer is the worst.