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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@sandphil

Thanks so much for your reply. It sounds like we have pretty much the same diet but my nutritionist said I shouldn't have oatmeal (okay with me as I don't like it). I don't seem to ramp up like you do but often after I eat I feel nauseated and crampy. If I lay down and nap or just rest for an hour or two I seem to feel better. However, I tend to live with constant fear that I am eating something I shouldn't. Mine started after I had a surgery. I had a hiatal hernia and it pushed my stomach up into my chest cavity and it was resting on my lungs and I have COPD (and I never smoked) they thought it should be moved. I never felt good after that. That is when they found I had gastroparesis, a year after my surgery. I weighed 165 when I went in for surgery and I now weigh 122 and I seem to stay there. I guess I can be thankful I had those few extra pounds that I could afford to lose. It is so good to discuss this disease with someone that has it too. I know one lady that has it here in my home town and I know of another one that has it but have not talked to her. Thanks so much for your reply. By the way I am 77 years old.
Sandy

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You are 2 years younger than I am.
I have found that normally if I don’t eat anything at all for 2 hours before I go to bed I do better.
I have not any other abdominal surgeries. I did have a hysterectomy after my second child. I had more than 20-fibroid tumors of multiple sizes. None were malignant.
I have not been told this, however, I do take a fall on carpeted steps coming down to my den. I was carrying too much to hold the rail or to really see over that very well.
I hit precisely on my bottom and this started a few month later. I truly think I injured my Vagus nerve when I did this.
I just seem to get weaker as time goes by.
I am so hopeful that this surgical procedure will work.
My daughter and I had been traveling quite a bit until I got this Gastroparesis, so she is now in Greece without me.
I probably will never be able to travel again.

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@sandphil

Thanks so much for your reply. It sounds like we have pretty much the same diet but my nutritionist said I shouldn't have oatmeal (okay with me as I don't like it). I don't seem to ramp up like you do but often after I eat I feel nauseated and crampy. If I lay down and nap or just rest for an hour or two I seem to feel better. However, I tend to live with constant fear that I am eating something I shouldn't. Mine started after I had a surgery. I had a hiatal hernia and it pushed my stomach up into my chest cavity and it was resting on my lungs and I have COPD (and I never smoked) they thought it should be moved. I never felt good after that. That is when they found I had gastroparesis, a year after my surgery. I weighed 165 when I went in for surgery and I now weigh 122 and I seem to stay there. I guess I can be thankful I had those few extra pounds that I could afford to lose. It is so good to discuss this disease with someone that has it too. I know one lady that has it here in my home town and I know of another one that has it but have not talked to her. Thanks so much for your reply. By the way I am 77 years old.
Sandy

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Thanks. I hope you find help.
Gastroparesis is a really life altering disease. Can I let you know what I find after I see Gastroenterologist in Louisville? My home GP looked him up today and he has had more than 20 articles published concerning this.

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@brendaharvey

Thanks. I hope you find help.
Gastroparesis is a really life altering disease. Can I let you know what I find after I see Gastroenterologist in Louisville? My home GP looked him up today and he has had more than 20 articles published concerning this.

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By all means, I would really like to know what you learn there. When do you go? WI would also be interested in reading any of his articles. This is most definitely a life changing disease. Still trying to get a handle o it. Thanks so much for offering to do this.
God Bless,
Sandy

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@snowtrooper22

i have had dizziness ,chest pain,bloating, headaches,gas,shoulder/arm pain all on my left side, feeling flush, lightheaded,acid refux, ears bothering me as well, loud noise hurts, heart palpatations,fatigue, feeling like i'm having a heart attack as well, been to the e.r. 3 times and the ekg and tests all say i'm not having a heart attack. had stress test, heart sonogram, ct scan of head, and abdomen... blood work ...thyroid checked sonogram of the kidneys and abdomen and all have come back normal...my doctor has said it is an anxiety or panic attacks... boy i'm so lost cuz its a horrible feeling... feels like the end is coming. I had surgery for a hiatel hernia,,,had it checked when i started to get these symptoms 5 months ago and my GI said everything was ok.... blood pressure is good.. i am not over weight...but i dont feel ok....neurologist is next..... everything has come up "normal" i dont know what to do... im a coach so i do have some stress and been at it for 15 yrs. i am on xanax and zolpidem to help me sleep cuz i wake up in the middle of the night with those horrible attacks.... i lost weight but have gained some back...it is a feeling id never wish on anyone. i want to be normal again like i was 6 months ago...

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Hi. I so sympathize with you and am experiencing the same. Trips to ER. Heart rate spiking. I have AFIB and Aflutter. Had ablation 3 years ago. I’ve had my esophagus stretched 3 years ago. Episodes come and go in the past but now they seem be daily. I have appointment with Gastroenterologist Oct 4. Food is definitely a trigger, meat so hard to digest and swallow. Interesting about muscle relaxers helping. I was given GI cocktail (lidocaine & malox) it works temporarily. I hope we all find solutions and share the information we are given. I’ve lost weight, now eat very little. Thank you for sharing.

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Good morning. I was diagnosed with Gastroparesis this year. I take Reglan 5mg before each meal and 10mg at bedtime. This has helped me. Best of luck, it is no fun to live with!

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@4ourhealth

Good morning. I was diagnosed with Gastroparesis this year. I take Reglan 5mg before each meal and 10mg at bedtime. This has helped me. Best of luck, it is no fun to live with!

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It is by far the worst thing I have ever experienced.
I will see a new surgeon on Friday and praying he can see a way to help me.
Right now I have no life.
Too much pain

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You sound like me to a T…. Not a diabetic, probably from one of my stomach surgeries over the years & yes years I’ve suffered… My gastric emptying test nothing first two hrs & 2 percent 3rd, hr. I was then told I could get up & I walked around the hospital & came back & was at 37 percent…. That in itself told me I need to walk to get things moving & it does help! Very small meals throughout the day with lots of walking. Only very cooked foods, no fresh or raw. I’m also lactose intolerant so that doesn’t help… I take gasx twice daily at least & Zofran helps a lot….unable to take Reglan ☹️ I wear a lot of longe clothing because anything tight gives me a belly ache. Had to give up wearing a bra also….that was difficult for me…I usually wear a sweater over my tops when out, I’m back to wearing undershirts like when I was little… I can tolerate small amounts of chicken, fish, ground meats, & eggs. If I have any bread (not often) I always toast it. Very small cooked meals & lots of walking. If I walk right away after eating it’s best for me & most of the time I don’t feel like walking….. Prayers For Comfort & Solutions….

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Since I am wheelchair-bound and can only take a step or two for transfers, walking after a meal is not an option for me. I do physical therapy chair exercises when I'm not too nauseated to move, which is very seldom. Also do tummy massage. Am open to more ideas/suggestions. . .

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@peggyjean

You sound like me to a T…. Not a diabetic, probably from one of my stomach surgeries over the years & yes years I’ve suffered… My gastric emptying test nothing first two hrs & 2 percent 3rd, hr. I was then told I could get up & I walked around the hospital & came back & was at 37 percent…. That in itself told me I need to walk to get things moving & it does help! Very small meals throughout the day with lots of walking. Only very cooked foods, no fresh or raw. I’m also lactose intolerant so that doesn’t help… I take gasx twice daily at least & Zofran helps a lot….unable to take Reglan ☹️ I wear a lot of longe clothing because anything tight gives me a belly ache. Had to give up wearing a bra also….that was difficult for me…I usually wear a sweater over my tops when out, I’m back to wearing undershirts like when I was little… I can tolerate small amounts of chicken, fish, ground meats, & eggs. If I have any bread (not often) I always toast it. Very small cooked meals & lots of walking. If I walk right away after eating it’s best for me & most of the time I don’t feel like walking….. Prayers For Comfort & Solutions….

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After I see the new surgeon on Friday, I will definitely let you know the results.
Prayers for you. Gastroparesis is a most difficult thing to handle!

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@brendaharvey

After I see the new surgeon on Friday, I will definitely let you know the results.
Prayers for you. Gastroparesis is a most difficult thing to handle!

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Very Difficult….never know what kind of day I will be having even with the best intentions….🙏❤️

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