Gastroparesis with severe symptoms!
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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I am like you. I’m writing this in 2018, 6 years later, but if you’re still on here I am here.
I have mild osteoporosis and have a lot of pain around stomach and back the pain is brutal in taking tramadol
Hello @shimmerpixie and everyone in this group. I have had chronic constipation for over 10 years and also suffered from eating disorders for over 25 years and still struggle but am much better. I saw specialists and they told me all the wrong things to do like take more fiber. I told them it made things worse but this went on for 10 years until a couple months ago I had a gastric emptying study done and was diagnosed with Gastroparesis. The first thing I asked was if my eating disorder history was the cause and they said it's not related. Mine is idiopathic. This past week things have worsened a lot. I don't vomit but have some acid reflux. I get severely distended and bloated (accompanied by pain) and sometimes pass an insane amount of gas at night. The symptoms seem to increase throughout the day. I am just learning about all this and am being sent to UW Madison Hospital for further testing and counseling as to how I can still maintain recovery in my eating disorder and not eliminate foods that I normally eat which are all on the "NO" list. I can not take Erythromyacin because of an interaction with another medication and also the expense of it with prescription insurance was almost $200 a month which I can't afford long term They just started me on a trial of Trulance. I am thankful for all of your stories and hope that we can be a source of information and encouragement as we continue on this journey. Much love to all of you…
@shimmerpixie I just came across your original post, have you had your symptoms sorted out yet? I also have areas in my colon that are slow…. then some that are fast?? Anyways your symptoms sound similar and I have been diagnosed with MALS, FMD and EDS. Would like to know if you have had any vascular workup?
Hi to you and anyone who can help me, as I'M DESPERATE: I was diagnosed with gastroparesis (rate about 33% after 5 hours, I think) over a year ago. I've had two gastric emptying studies. I've had MRI's of the abdomen and pelvis which are okay. I have had numerous endoscopies, and a capsule endoscopy. The battery from the capsule endoscopy died before it passed through my stomach. I've been to at least four gastroenterologists. The motility doctor at Columbia Presbyterian thinks my symptoms are from gastroparesis. Another gastroenterologist doesn't think so, but he is unable to pinpoint where my symptoms are coming from!!!! I am CONSTANTLY NAUSEOUS, HAVE DRY GAGGING, FEEL FULL, AND SOMETIMES I CANNOT EAT. FOR THE PAST SIX MONTHS, I'VE BEEN LIVING ON SOUP, CRACKERS, AND WHATEVER I CAN FORCE MYSELF TO EAT WHICH IS BLAND. I GET NO RELIEF! I'VE BEEN LIVING A MISERABLE EXISTENCE ON THE COUCH. I AM 65, AND I GO TO THE YMCA THREE TIMES A WEEK. THAT HAS BEEN DIMINISHED DUE TO THIS CONDITION, WHATEVER IT IS. DOES ANYONE HAVE ANSWERS FOR ME? I CANNOT TAKE THE MEDICATIONS PRESCRIBED, BECAUSE I AM ON AN SSRI AND ANXIETY DRUG FOR YEARS. ANY ANTI-EMETIC DRUG IS CONTRAINDICATED WITH THESE OTHER MEDS. WHAT SHOULD I DO? WHAT ELSE COULD BE CAUSING MY PROBLEM? I HAVE LOST 10 POUNDS SINCE AUGUST. I HAVE HORRIBLE NUTRITION. I DRINK BOOST. I CAN'T EAT VEGETABLES EXCEPT FOR SQUASH. MAYO CLINIC DENIED ME AN APPOINTMENT BASED UPON MY GASTRIC EMPTYING STUDY. THEY SAID THAT ALL WAS BEING DONE FOR ME IN NEW YORK! DOES ANYONE GET IT????? I'll take any answers and suggestions anyone may have. We know I have gasgroparesis, but are my symptoms coming from that disorder? I have a lousy primary doctor who cannot help me. What should I do???? Please help.
Oh so sorry what u r going through it sounds like gastropersis i can't take meds either but I'm not in u r condition wish I could help keep looking for a doc to help
You may want to look at the MALS thread…. we have so many overlapping symptoms. I know it is difficult when you are looking for a cause of symptoms, however the MALS group may have some suggestions with management of symptoms? Just a thought… for me I have found I do better with carbs, and I have to take gummy fiber daily. Do you have pain after eating?
Hi, @lell, this is Mamacita, from the Adults on the Autism Spectrum group. Years ago, when my gastroeneterologist said that I "might" have gastroparesis, my cousin, a Biologist, gave me an exercise to do where I "suck in" my abdomen, and release. Repeat. As many as you can do comfortably. And throughout the day. About this time I started eating gluten free, all except for one small yogurt each day. This progressed to Paleo, and now finally, Lazy Keto. I also have four gummy probiotics per day. I eat mostly vegetables and protein, maybe a handful of strawberries or blueberries. I also have IBS and Diverticulitis, along with severe food allergies. However, with the measures taken that I have mentioned, I have no symptoms from any of those conditions. Try to find a really good specialist for a second opinion. Who knows, you might like that doctor even more. What I have mentioned works for me, and many others. It may or may not work for you. I wish you good success on the path to health in this new year!
Do you know of a link that demonstrates that exercise by chance???
What is that?