1. < Digestive Health

Gastroparesis with severe symptoms!

Posted by paarak @paarak, Jul 17, 2011

Does anyone have gastroparesis (low stomach emptying) and what are you doing to manage the problem. I was finally diagnoised with this condition this year after at least 3plus years of unexplained illness. Most of my symtoms were related to pain in the chest; deep back shoulder pain; lightheaded/dizzyness; I always felt like I was having a heart attack. But each time I went to the ER all the heart test came back fine and was told it was just acid reflux. I have been to cardiology; neuralogy; gastrology. I have had heart test; stress test;;thryrod; diabectic test; all kinds of blood test (only showed low vit D) MRI of brain; spinal tap. Finally had stomach emptying test in March - which showed 85% food still in stomach after 3 hours. I have had to switch to a no fat; low fiber diet - pretty much all liquid; soft (babyfood like) foods. If I do experiment and eat something that doesn't move through - then I end up with the deep shoulder pain; lighthed/dizziness;; numbness in the arms/fingers and over all wekness. In order to overcome this feeling - It seems to work by drinking just water /gator aid for at least a day. I just don't know if this all started by a nerve damage issue or if it is reverserble. I have done a lot of internet reading and there doesn't seem to be anything to do except eating habit changes. And no one else seems to associate the pain I have with the stomach - I never seem to have stomach pain - Only fullness; nausea; bloating/gas. I also am not diabetic. Which my understanding is a reason for this condition. If you have this condition - what are your symtoms and how are you managing? Thanks

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willows | @willows | Feb 3 12:11pm
In reply to @zoey662 "I've had it on and off since HS. I was not a diabetic till my 50's...." + (show)
@zoey662

I've had it on and off since HS. I was not a diabetic till my 50's. It was years to get diagnosed as if I was feeling OK the gastric emptying study would be OK. I finally had a MD get one the next day and after 4H I still had 95% of it still in my stomach. Cisapride was a mirical from God but the FDA took it off the market for arrhythmia. Now I'm left with the constant nausea and occ vomiting. Even though I'm now a diabetic I eat whatever I can get down. I've always hated milk so all of those suppliment drinks I should take in, just make me sick. I've been so miserable from thisthat if I can enjoy eating, I will. I'd rather not eat than force something down I can go into a grocery store and come out with nothing, as nothing looked good.
I hurt in my upper mid back and my stomach, sometimes at the same time. I have severe reflux and have had to have my esophagus dilated many times now. Thanks for the info about the fundoplication. I've not heard a lot of positive for the pacemaker. They brought that up to me in the 90's. When I was so sick and throwing up and in pain, I was begging for a J tube and bypass my stomach. Now that's when he offered compassionate use of the cisapride before it was approved by the FDA. My life changed. You can still get it from Canada I believe. Reglan and Phenergan make me twitch. Cola syrup can help nausea. Your local pharmacist can get it. Galveston is a med I can't be without. Domperidone has been out there for years but it's impossible to get a referral to the 1 guy in town giving it, and I'm in Atlanta, GA. I just read there's a Reglan Nasal spray! I'll have to ask my MD. I really hate those people who say eat this and you'll be perfect. My weight can fluctuate 10 lbs a week depending on N&V. However I'm on the heavier side. I did lose my appetite for a year with vomiting and I lost 40lbs in a year in 2018. A hell of a way to do it. I've gained 15 back. I wish the best for anyone going through this. It can be hard to diagnose esp if you aren't a diabetic. I'll add prayers for others with GI problems.

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In my case, pain, nausea, impossible to eat a meal and actually digest it. You mentioned domperidone. I take this drug and for me it has been a miracle drug. If I am without it for more than 24 hours, I have severe stomach pain.My stomach was so bad, as seen in an endoscopy, that the Dr. begin my treatments with 6 domperidone tablets a day. Tapering down to the recommended 3 a day. I am mostly fine now except for occasional reflux.

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edrommer | @edrommer | Feb 13 11:50am

I am absolutely miserable. I've suffered with abdominal pain for over 10 years but starting in September things went from bad to OMG this is the worst pain I have ever felt. The pain is so bad that I take 4 pills of hydrocodone every day just to make it through the work day and I have no pain med left for at night. They did an upper endoscopy on me and actually had to suction out my stomach contents. I can barely eat. Yesterday all I had was 1/4 cup of soup. I have to drink sugar drinks to keep me from feeling like I am going to faint. I am not diabetic. Since September I have lost 47 pounds. The stomach pain and back pain are just awful. The only thing that I have found helpful is going for a walk. If I do eat anything I vomit and sometimes I even vomit the liquid I ingest. Everyone I have turned to for help just tells me to deal with it and that there is nothing they can do. My family is tired of hearing me complain about how awful I feel. Therapist and psychiatrist are helping me deal with this pain, but its really hard.

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babs60 | @babs60 | Feb 13 12:58pm

Hello
I am exactly where you are 🥴 Currently very frustrated with my GI team, who seem like my severe gastroparesis diagnosis is no big deal !!
I feel you exactly symptoms with back pain et all.

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babs60 | @babs60 | Feb 13 1:05pm
In reply to @indigo7505aolcom "Be careful with reglan after a few months of use I had paralasis in my hands..." + (show)
@indigo7505aolcom

Be careful with reglan after a few months of use I had paralasis in my hands and forehead its hard to decide what to take I'm now on nothing until I'm hospitalizedsome of the drugs I was put on made the rest of my life miserable

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My doc has suggested a low dose of Reglan for my severe gastroparesis too. I have told them that I cannot tolerate it. They gave it to me when I was in ER for a migraine. I couldn't even stay on the gurney!! The restlessness and anxiety it caused me were through the roof. They eventually gave me benadryl to counteract it's effects. So I am not willing to try it again even at a lower dose !

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rivermaya34 | @rivermaya34 | Mar 19 7:55pm

Hey there, does anyone have suggestions for what to do (or how to be creative) when your Dr puts you on an all-liquid diet and yet you can't tolerate even that due to the level of nausea/pain and the consequences of food rejection? I've tried broth, protein shakes, gatorade etc and my body seems to hate it all. I can't win this one, it seems. Also, does anyone ever have pain associated with Gastroparesis? Curious if I'm not the only one... thanks. Don't know what to do anymore ...I've got a lot of life ahead and fight within me still, whether my body agrees or not.

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pdilly | @pdilly | Mar 23 5:02pm

Have they ever checked to make sure you don’t have a monster in your belly? That’s what I call a bezoar! I had that with stomach pain when I was first diagnosed with gastroparesis.

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1 reply
mcilenti99 | @mcilenti99 | Apr 1 6:54am
In reply to @bekka93 "I was just diagnosed with gastroparisis a few days ago. My symptoms include: chest pain/heaviness/tightness, shortness..." + (show)
@bekka93

I was just diagnosed with gastroparisis a few days ago. My symptoms include: chest pain/heaviness/tightness, shortness of breath, every scent causes a trigger (newer symptom) stomach pain, nausea, vomiting, off balance, fatigue, loss of appetite, diarrhea, constipation, bloating/gas, body aches, heartburn, lightheadedness, right side of neck and shoulder pain, and a feeling of choking. I have gone to many doctors (within 1 year and 8 months now). The breathing part is the most that’s bothering me. I’m extremely stressed, depressed, miserable, anxious, and scared. I don’t like these feelings, I have lost interest in most things in life. I don’t even wanna get out of bed in the morning. Does anyone have breathing problems with this?...I’m still figuring this out, my doctor thinks it’s acid reflux (chest problems). I sure could use some support. Thanks.

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Are you still having symptoms? I have gastroparersis, was diagnosed 2 years ago and for the most part my symptoms are manageable but I experienced very bad shortness of breath at night when trying to fall asleep. I’ll be up until late until my body is just too tired and I finally fall asleep but sometimes I’ll take a gasX and that helps? I’d love to know if you experience anything like this. It’s debilitating, I’ve seen cardiologist and pulmonologist and they all say everything is fine

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1 reply
tes72 | @tes72 | Apr 1 10:50am
In reply to @mcilenti99 "Are you still having symptoms? I have gastroparersis, was diagnosed 2 years ago and for the..." + (show)
@mcilenti99

Are you still having symptoms? I have gastroparersis, was diagnosed 2 years ago and for the most part my symptoms are manageable but I experienced very bad shortness of breath at night when trying to fall asleep. I’ll be up until late until my body is just too tired and I finally fall asleep but sometimes I’ll take a gasX and that helps? I’d love to know if you experience anything like this. It’s debilitating, I’ve seen cardiologist and pulmonologist and they all say everything is fine

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Yes. I was an overachiever. Now I can barely walk upstairs without loosing my breath.
I have nonalcoholic cirrhosis, atrophied right kidney, ckd, ptsd, night terrors mdd, GAD, depression, hair loss still, serious cognitive impairment.

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mimi8202 | @mimi8202 | Apr 27 6:48pm

I was diagnosed with gastroparesis a year ago and nothing the doctor has told me to do helps. I’m naseaus, get burning pains in my stomach which radiates into my chest, feel weak 24 hours a day. Am desperate for help.

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9 replies
Mentor
Janell, Volunteer Mentor | @jlharsh | Apr 27 8:59pm
In reply to @mimi8202 "I was diagnosed with gastroparesis a year ago and nothing the doctor has told me to..." + (show)
@mimi8202

I was diagnosed with gastroparesis a year ago and nothing the doctor has told me to do helps. I’m naseaus, get burning pains in my stomach which radiates into my chest, feel weak 24 hours a day. Am desperate for help.

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Well that sounds horrible @mimi8202 . I am so sorry. I am working through GI problems enough to understand how desperate you are, and others familiar with gastroparisis will no doubt have good thoughts. I do know troubleshooting our messes can be rough, so hang in there. It may not seem like it but you will make progress when you keep talking to your doctor. What has your doctor recommended, and what happened when you tried them?

I found information that may help you https://www.mayoclinic.org/diseases-conditions/gastroparesis/diagnosis-treatment/drc-20355792

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