WAKEMEUP and others with.......gastroparesis

Discussion in 'Fibromyalgia Main Forum' started by fibrobutterfly, Nov 19, 2006.

  1. I don't know anyone who has this, and I have been searching the internet and reading all I can.
    I would sooo appreciate any helpful ideas to prevent pain with gastroparesis or tips would REALLY be helpful. I am on the reglan now but still especially painful at night and keeps me awake. Questions like... Do you take anything for constipation, what can you eat. What bothers you when you eat it? I have generic reglan, is this what you take? It says it gives you diarehea but hasn't , I wish it would sometimes. ugh! How long have you had it? I get scared reading you may need a feeding tube. OMG!
    Thanks so much, I REALLY appreciate any helpful ideas, answers.





    [This Message was Edited on 11/22/2006]
  2. Catseye

    Catseye Member

    For constipation, use extra vitamin C and magnesium. Like between 2000 and 6000 mg of C and 1000 of magnesium. Increase slowly until you get the desired effect. You can check out my posts on food:

    not easy but effective
    diet is everything
    who is really willing to drastically change diet to get better
    change food

    Since you're sensitive to food, like me, you have to use all the "food rules". That means pay attention to food combining, digestive enzymes, liver congestion, leaky gut syndrome, etc. Food is no longer a luxury, it's your body's medicine.

    Also, gastroparesis can be caused when there is injury to the vagus nerve. I don't have gastroparesis exactly, I don't think, but I have every other problem I've mentioned. If I don't go to the chiropractor every 2 weeks and get my neck popped, I can't function. That's because my neck is pinching my vagus nerve and interfering with my nervous system, including GI function. Chiros aren't just for pain and stiff necks, they help keep your nervous system functioning. Nerves get pinched when your spine is out of line and you have all kinds of problems. I only went to a chiro when I read on the Edgar Cayce website that EVERYONE should have adjustments. I was desperate for relief at the time and I went, thinking it probably wouldn't work, but desperate and hoping.

    I could barely walk in his office, he popped my neck and back for awhile and I left feeling like I did when I walked in. But 20 minutes later, I started to feel really good and I was sitting up in a chair which I hadn't done for months. I never had any pain like you would think you need a chiro for, I just felt bad all the time. Apparently, my vagus nerve in my neck was being pinched and that made a big difference in how I felt and what I was able to do.

    So I went every 3 days and now I go every 2 weeks. Try it, it's less expensive than a regular doctor visit. And my chiro is the person who gave me a pamphlet on food intolerance and cfs. This is when I started improving.

    The first visit took 20 minutes for me to feel better but now when I go, I feel it immediately when he pops my neck. Chiros aren't just for bent over old ladies with back pain! good luck to you, karen
  3. I am afraid I cannot go to the chiro as I have a bad neck and can't be popped! Thx anyways.
  4. Catseye

    Catseye Member

    I just got through looking this up a little more. What an unbelievable pain this must be! Is it diabetes related or do you know what the underlying cause is?

    You may have already read these things but just in case,

    avoid high fats, fiber, spices and red meats because they stay in the stomach a long time.

    liquid meals are highly recommended. What about juicing vegetables and whey protein shakes, have you tried these? Also, one lady eats light fish, tilapia, because she says it doesn't spend too much time in the stomach. She liquifies most of her food. Have you done the obvious, no junk food, wheat or dairy?
    I got this from gpawarenessfund.com. It's got alot of info on it, by a lady who had it. Have you seen this site, yet? karen
  5. Cromwell

    Cromwell New Member

    I just had a masseusse work on trigger release on the soaz(spelling?) muscle that runs down each side of the pelvic girdle. The pain was horrible for the few minutes but it has lifted my addominal pains considerably, helped greatly with digestion and elimination. Also she did an intestinal massage too. The pain literally lifts as soon as the massage ends, but whilst it is being done it is scary as it magnifies the pain for the few minutes and you worry you may just be brusting something inside!!! The pill that I wrote to Wake about is an older pill called Clidinium that is cheap and works very well at calming the peristalsis thatplagues so many of us.

    If you can find a masseusse who understands the relationship between the abdominal muscles, the intestines and the vagus nerve then I would recommend going for this type of trigger release. The results are dramatic. It takes about 4 or 5 minutes then about another 5mins for the intestinal massage which does not hurt.

    Love Annie

  6. This is worse than fibro. I do not have diabetes, have been tested so many times for it and just recently, yes I did have the stomach emptying test and it showed no movement of the egg they give you to eat after 1 1/2 hrs. I am thinking of going back on the zelnorm instead of the reglan, I didn't notice much difference in them. My worst time is at night trying to sleep. The weird thing is with eating almost nothing, I am not really losing weight other than a couple pounds! NO FAIR! Oh isn't life fun with all our problems.
    Thanks again for your input and everyone else too
  7. Mar19

    Mar19 New Member

    I lost a bit over 40 pounds in a year. To me it was very evident that my stomach wasn't emptying, I always felt full and bloated.

    I talked to my FM doc about it and he started me on Reglan ~ bad drug! It helped my stomach symptoms a *bit* but intensified my problems with depression.

    FM doc and I both decided it was time for a GI doc. Went to her; when she asked why I was there, mentioned a dx of possible gastroparesis.

    She tested me for everything but. Everything came back clear, but all the prep and fasting I had to go thru really wreaked havoc w/my gut and my FM/CFS/CMP/etc, etc...

    The last test I had, a capsule endoscopy, only showed "delayed gastric emptying" ~ is this where we choke arrogant doctors? LOL

    WakeMeUp, I just read thru you list of things NOT to eat ~ Yikes! You've named nearly everything I do eat. I've been eating very small amounts of whatever I do eat, have to, but I've been relying a lot on fruit, toast, easy stuff. Bad stuff, now I see. No wonder I still have so many problems. :( Thankfully, I have been living on lots of chicken breast ~ red meat has been a no-no for a couple of years now.

    After the capsule endoscopy the GI doc did write another Rx for me, first for Reglan ~ on my first visit she told me NEVER to take it; I reminded her it didn't work for me (tried to be nice).

    She wrote a second Rx, don't remember the name, but I did check out the side effects online when I came home. There was a warning to not take it if you had delayed gastric emptying. I threw the Rx slip in the trash. NO, I'm not going back to that looney-toon anymore. At least I know eveything in my intestinal track is otherwise clear.

    I'm going to check out the site you recommended and see what else I can find out, thanks.

    I've noticed that every now and again, I can *almost* eat a normal size meal. Does that happen to you too? Not very often, mind you. I have to pay really close attention to what my stomach is telling me. If I take one bite more than I should I pay big time for it.

    I also *cannot* be around large amounts of foods ~ buffets, etc. I find that really makes me feel nauseous. Can't eat a thing then.

    I'll stop blatthering on endlessly now, :)

    byeeeeeeee

    mar


  8. I am having a particularly bad day. Gee its bad enough I have fibro and now I can't eat. Somedays its okay to eat, other days OMG I am in misery. Right now I feel like I ate a weeks worth of meals and I have hardly eaten. I feel like a helium balloon and wish it would pop. I figure it must be the past food still in there. I am taking reglan but its not helping. I think I will go back on the other med zelnorm. Are you on any medication now or just suffering and not eating? I am at my wits end, today is really bad. Do you take magnesium or anything like that? Anyones help is so appreciated.

    I am sort of scared to be on reglan after I checked and it said there are lawsuits for people on it. YIKES!

    also on zelnorm if you don't take it an hr. before you get diareah? Right now I wish I could.

    another lady I know said she made herself throw up to empty her stomach contents, which sometimes sounds good to me, but I don't think thats a good idea?



  9. Jillian40

    Jillian40 New Member

    Hello Fibro Butterfly -

    I HAD gastroparesis or something really closely related. My doc put me on Propulsid, before it was taken off the market.

    It helped only marginally, so I too did everything I could diet-wise to help because of the nausea, pain and major discomfort from always being bloated/full. I agree with limiting red meats and pureeing foods or doing smoothie type foods for the time being. And Wake Me Up's food suggestions sound very well thought out. :0)

    But, what I'd like to share with you personally, is that I NO LONGER have this problem, and I think I know what resolved the problem for me. I want to say first off that I don't have diabetes, so this was not the cause. Ie: this suggestion may not work for someone with this as the reason.

    OK, here goes: I went to a D.O. (doctor of osteopathy) who specialized in muscle work and something called "Visceral Manipulation" He did something VERY VERY similar to what (Anne) Cromwell described in her reply. (Hello Anne!) He did a direct pressure in the middle of my abdomen which initially caused intense pain (for 2-3 minutes only) but after 3 treatments like this, the bloating literally minimized and now is non-existant. He explained to me that the "ileo-secal" valve can become stuck and backs up the intestines. (I think it's related to spasming)

    I personally attribute it to the Myofascial Pain Syndrome symptoms that most of us have, and know from charts and books that I've studied at length that a nerve bundle can be responsible for referred pain and related symptoms.

    Due to the fact that this same doctor also treated 2 other severe symptoms that I was having, also relatd to digestion, (and I NO LONGER have them either) I truly believe that this may help or resolve some or all of the symptoms related to gastroparesis. They were gallbladder pain and daily choking. Mind you I had all three at the same time, so I TRULY TRULY understand what you are enduring with your gasteoparesis. I became very depressed and began isolating more and more. I also was embarrased being around the public because of certain symptoms.

    Please ask me any questions that you may have as I will describe, explain or provide references or ideas for doctors who may treat this to help you.

    I would feel really bad if I kept my mouth shut and didn't tell you my story in case you or Wake Me Up or someone else who is reading could be helped.

    I will pray for help for you with this life altering problem.

    Take Good Care.
    Warm Hugs,
    Jillian






  10. Mar19

    Mar19 New Member

    I'm not on any Rx meds now for gastroparesis ~ I'd like to at least try the Zelnorm I think.

    I'm not going back to the GI doc I was seeing, she was one strange bird. She really didn't listen to what I was saying, but I stuck it out b/c she ordered probably every known diagnostic test for the intestinal tract. It was a rough couple of months, but now I know that the only thing that shows up is the gastroparesis.

    I've taken Probiotics (Jarro Dophilus EPS) and anti-gas type meds (Gas-ex, etc) with varying degrees of help ~ not much really ~ the JarroDolphilus seems to be the biggest help.

    I've got to be honest, I have made myself vomit once or twice ~ it's not worth it though. It would seem like a good idea to get rid of the pain, but it always trigger whatever nerve (vagus?) that controls all that and I'd wind up vomiting for hours, days sometimes. I haven't done that it a looooooong time.

    One simple thing that helps *some* is hot Rooibos tea. Rooibos (pronounced ROY boss) is a red tea, no caffeine, taste very similar to regular tea. I'll sip it and while it doesn't elimanate all the pain it does ease it a bit.

    I saw that WakeMeUp suggested an ice pack to relieve the pain ~ I'm one of those people who can never get warm ~ I use a heating pad instead ~ again, it doesn't get rid of all the pain or solve the problem, but for me it eases the pain somewhat.

    I agree with you about having FM and then this on top of it all ~ doesn't seem right, does it?

    I've also tried magnesium and vitamin C ~ they didn't really help much at all for me ~ I must have a *really* blocked up system for sure. LOL, sorry to be gross, but it is what it is, you know.

    I found someone on a book forum who has GP as well. She's offered to talk to me about all she's been thru. I'm going to have to take her up on that; trouble is she is sooooo busy. She works, goes to school, is super-mom, the whole nine yards. All this while suffering with GP and having a feeding tube besides! I can't imagine how she does it all.

    I'll check in again, like I said, I'm so happy I found this thread.

    mar
  11. I felt so alone with fibro until I found this board I didn't knwo anyone who had it. Now with this gastroparesis it's the same all over again. I sooo appreciate all ideas and thoughts you have on the subject. You just can't imagine how these dd take over your life, well yes I guess you sure can. I am making a long list of questions to ask the dr. in Jan. when I go. All he told me was eat small meals more often, don't eat persimmons. If only it were that easy.

    I was wondering if accupunture or accupressure would help ease this problem.

    Thanks again and God Bless you all.
    [This Message was Edited on 11/22/2006]
  12. Jillian40

    Jillian40 New Member

    It is good to meet you. I'm sooooo sorry that you're having to deal with this problem on top of all that you already have to cope with. Gentle Hugs to you.

    Did I tell you that I had gastroparesis, slow slow slow stomach emptying for about a year or more.

    It ran my life. I practically went on purified foods. Plus I was choking 2-3 times every single day. I was embarrased to eat in public cause I had to either go into the restroom or outside by the bushes to try to get stuck food out of my throat. I even had to do a hymelic maneuver on myself countless time over a sink edge when the air cut off totally. Very scarey stuff. Then I'd be miserable because I felt bloated, nauseous and just plain mad when my food wouldn't empty for a very long time. I got depressed.

    I can't emphasize enough, how in shock I was when this D.O. was able to treat me with "hands-on" techniques that gradually, over 5 sessions or so, resolved the problems; both the bloating, slow digestion and the choking.

    Do you have any resources in your state for D.O.s that work with people with musculo-skeletal problems?

    Let me know if I can be of any help in directing you to a docor or resource. I found that my primary care doc didn't ever refer me to these less mainstream docs, like the D.O. I mentioned, because not too many docs are aware of what Myofacial Pain Syndrome is or how to treat it.

    Well, dear one, I wish you well in your search for help.

    Jillian
  13. Mar19

    Mar19 New Member

    Question for you.

    You said that you choke on food. Is it all the time, or just an intermittent thing? I have problems swallowing, but not all the time, there are times I even choke on water.

    During my round of GI testing I had a barium swallow and video swallow study. It was a good day, so it showed everything was "normal".

    Sometimes food gets stuck in my throat; sometimes it won't go down my throat, just sort of sits at the back of my mouth; sometimes it feels like it's in a "pouch" in my esophagus. If I did have a pouch or diverticula, the barium swallow should have shown that up, it didn't. But like I said, it was a pretty good day for me when I underwent that particular round of testing.

    I have osteoporsis and can't take Fosamax or any of the meds for it (I probably wouldn't take them anyhow with the side effects they have) because I can never count on when I can take meds and they'll actually go down without me having to have a cracker and water to help push the pill the whole way down into my stomach.

    I'm going to try and look for a chiropractor. The one I always used to go to refuses to adjust me unless I let him adjust my entire spine. I've had two failed back surgeries (L4-5), with rods and screws; that area is so exquisitely painful I can't even touch it myself, much less have it manipulated.

    I went for massage therapy several times and the girl wouldn't listen to me and worked on my lumbar region anyhow. I was in misery for months afterward. Need a new massage therapist too. :( She helped a lot with the rest of me, she just wouldn't listen about my lower spine even after I returned, barely able to walk using a walker. :(

    Mar

  14. ilovecats94

    ilovecats94 New Member

    I do a lot of what you all say not to do. I eat one large meal (dinner) a day because I don't get up until around 10 or 11 AM.

    I take 10 mg. of Reglan before I eat along with a Xanax for FMS.

    I used to be on Propulsid, but not only did it make my FMS worse, it was taken off the market and then I went back on Reglan, which is so much better. The Propulsid made me constipated too.

    I don't understand why all of you are so worried about Reglan as I have never had any problems with it. But then I'm only taking 10 mg. a day.

    I do have GERD badly since January, but the Prevacid is helping that and a wedge pillow.

    All in all, I'm doing very well. I do have diabetes and the gastroparesis is nerve damage from diabetes they think. I only saw a gastro doc when I was in the hospital several times. I don't see one now, I just see my family doc.

    My main symptom was stomach pain. I do have a lot of weight to lose.

    Sorry so many of you are struggling with this. I can't deal with small meals a day because I'm on insulin and would never be able to get the correct dosage.

    Eating all the time would drive me crazy anyway.

    I do wish you all the luck in the world, though. I guess we all have to deal with this with what works for us.

    Happy Thanksgiving,
    Faye
  15. Mar19

    Mar19 New Member

    Speaking for myself, the problem I had with Reglan was that one of the major side effects of it is depression. I've struggled all my life against depression; I did give Reglan a try for about a month.

    The good it did for me, as far as speeding along gastric emptying, was minimal; the depression it produced in me was major. Not at all a good trade-off.

    Everyone is different though. Truthfully, I really wish it had worked for me. I miss being able to eat like I used to.

    I eat little bits thru out the day, or sometime just one small meal. Today, being Thanksgiving with all the wonderful smells filling my home, I really wish I could again enjoy a feast. I can't. I'll eat what I can, though make do. It's like anything else, one day at a time.

    Love and blessings
    Mar
  16. Is really not working any better than the zelnorm did so I may switch back to zelnorm. I HATE THIS! I mean you can't imagine being afraid to eat and have stomach pain and SEVERE, I am talking unreal bloating!
  17. Please do ask her, I am losing my mind over this. Mine is also unknown why? I just want it to ease up or better yet go away. How awful at 18 to get it though.