Esophageal dysmotility

I’m a healthy 67 year old female up until October 2024. I first was diagnosed then with acid reflux from pain in my chest, difficulty swallowing (globus sensation). I was put on PPI not feeling much relief. In January 2025 I had an endoscopy which came back normal. Was told by Gastro doctor to eat small meals, chew slower, etc. In February I had a manometry test showing I have ineffective esophageal motility. Told there is no cure or medication and just eat a prescribed diet. No more PPI and I am still in constant pain, especially in the chest no matter what I eat. I have lost 33 lbs since October down to 117 lbs. Doctors have not been helpful. I a as m terribly discouraged.

Hi @bla1958
I am trying to navigate systemic problems that include some of what you are bringing up, so I am not sure I know much. I am trying to understand what possibilities are as far as what can be wrong and what could help. Something beyond what we know, right?

I did find something recent that sorta walks through how non cardiac chest pain is addressed. I notice the authors are from Mayo Clinic. It looks like PPIs are the first go-to but maybe not the only one. Have your doctors recommended anything else to try?
https://pmc.ncbi.nlm.nih.gov/articles/PMC11523089/
@kirbylogan maybe this could help you on your quest as well. 😀

I get esophageal spasms which hyoscyamine helps. It's a tiny pill that dissolves under your tongue. Did the doctor discuss if having your esophagus stretched would help? It's similar to having an endoscopy with a larger tube

I’m a healthy 67 year old female up until October 2024. I first was diagnosed then with acid reflux from pain in my chest, difficulty swallowing (globus sensation). I was put on PPI not feeling much relief. In January 2025 I had an endoscopy which came back normal. Was told by Gastro doctor to eat small meals, chew slower, etc. In February I had a manometry test showing I have ineffective esophageal motility. Told there is no cure or medication and just eat a prescribed diet. No more PPI and I am still in constant pain, especially in the chest no matter what I eat. I have lost 33 lbs since October down to 117 lbs. Doctors have not been helpful. I a as m terribly discouraged.

I totally agree! Thankfully I found an excellent gastroenterologist. I had severe Dysphagia, and in the last 12 months have had 6 EGDs w/Dilations & biopsies, which resulted in the diagnosis of Lymphocytic Esophagitis. I've been on Pantoprazole & Hyoscyamine for a year to no real avail, however I was was started on Fluticas HFA AER 220MCG oral corticosteroid 3 months ago that started helping reduce the stuck food & resulting vomiting that was occurring with every meal, and swallowing of all pills. It was really horrible. The last year I've cut out all caffeine (by instruction), and haven't been able to eat any meats, raw veggies, salads, pasta unless cooked to death. Had gotten to the point I couldn't eat mushed up scrambled eggs nor mashed small curd cottage cheese, etc. With the Fluticas, I'm not having food stick & throw up very often now, whereas it was every meal every day. Miserable! Eliminating the caffeine and most dairy has really reduced my inflammation considerably and I'm able to take fewer pain meds for severe orthopedic issues. LE is considered a chronic, long term disease, so I don't expect to "get over" it, but I'm certainly grateful that my gastro put me on the inhaler. It has changed my life. I still have to be careful about the temperature of water & hit tea, lukewarm and not extra cold or hot as I like them. My gastro is a conservative physician, and I appreciate that. That's why he didn't resort to Fluticas (or the alternative Budesonide, which he said was "really nasty"...his words!). He never tried to overstretch my esophagus during the EGDs, and has been as frustrated as me that he wasn't able to get it more open during each of the 6 procedures without causing tearing & bleeding. Please find a GOOD gastroenterologist that you trust (I found mine after asking close friends who they saw, and got several really good recommendations from their experiences, so I trusted him going in, and he's proven time & time again that he's really good). Make sure you find out if they are trained and experienced in esophageal & motility disorders. Two things that have changed my life in the last 15 months is the severe Dysphagia and the resulting dietary changes I've had to make. I've had to give up most of my favorite foods (like Jimmy John's sandwiches, pizza, etc.), all spicey foods, etc. Being a lifelong lover of all foods & ethnicities, it's a major life change to be sure. But over time you learn to adjust. It's just not worth attempting to swallow foods that I know will stick & come back up. At first I relied on ice cream, cream of chicken soup, and chocolate pudding cups. Obviously not a healthy diet, and didn't help with weight loss either. Now I just have to be very careful... example, I recently tried Madras lentils that had smashed and whole beans...I could eat the smashed parts, but not the beans because of their skins. So now I'm trying to learn how to de-skin beans so I can eat them as protein substitutes for the red meats, pork, chicken, etc. that won't go down. I'm sorry this is so long, but I want to give you what I hope are helpful ideas in how to manage your symptoms. Please, seek help from a good gastroenterologist! It makes all the difference. No doctor should ever tell you that you just have to "live with it". To me, that's insanely arrogant and borders on malpractice. I had all the manometry & barium tests in 2020 when I first started experiencing issues, but with Omeprazole they mostly subsides until last Fall. If you haven't yet had an EGD (different from an upper endoscopy), please get one as soon as you can (again, from a well-trained knowledgeable gastro), and see what it shows. Sounds you will need the dilation as well with it...and ask them to do biopsies at the time. That way you'll know definitively if something serious is going on. It could be Eosinophilic Esophagitis, or like me, the much rarer Lymphocytic Esophagitis. Scientific research thinks it may be a subset of EoE, but aren't sure. It's also considered an autoimmune disease. I've had the autoimmune disease Pulmonary Sarcoidosis since 1996, but there's no research yet that the two are related. Both are rare. LE is present in 0.01% of the population, so unless you have a knowledgeable gastroenterologist, they may not know about it. I know I keep harping about finding a good gastro, but it is unbelievably important to be treated by someone who knows about rare diseases and how to treat them. I wish you all the best in finding a good doc, getting the appropriate tests, and figuring out the root cause of your problems. It's hell, believe me! I don't want anyone suffering what I have for so long. I'm grateful that I don't have a life-threatening disease like cancer, etc., but it's no fun managing these diseases either. They are life-altering. My prayers are with you.

Hi @nascar4433
What is the difference between an EGD and upper endoscopy?

I have had acid reflux and indigestion problems for years. I’ve seen a gastroenterologist for years as well.

I have a genetic problem that I have to go to University of Iowa hospitals, for that is called Ehlers Danlos syndrome. I have a hyper mobility of joints, which there is no cure, but I have along with that a connective tissue disorder, which affects my collagen and healing

I have for the last couple years, felt different as if stuff was getting stuck at the bottom of my back of my throat or bottom of my neck. I would still go to bed a couple hours after I’ve had supper, and would be inclined, and still regurgitate. I can drink liquid and still bend over shortly after and it comes back up.

I have met with the surgeon at the University of Iowa hospitals, and he explained with my issue and having Ehlers-Danlos Syndrome that my risks would outweigh my benefits, and I could be worse off. He said because of my connective tissue disorder that collagen issue would allow me to not heal. I also had an emergency splenectomy years ago and he said I would probably have quite a bit of scar tissue inside, which would be difficult as well to do the surgery. In August I am going to have a device put on my esophagus and I have to wear it for 48 hours to measure the acid in my stomach. He said if that measures extremely high, he may rethink surgery.

After all of this, I’ve said, I guess I’m just wondering what kind of stuff I can eat. I have been drinking meal replacement shakes for the most part. I can eat salad because it’s not hard and crunchy. I eat yogurt. Otherwise I might as well forget meat, and bread of any sort.

If anyone has any ideas of a diet or food that I could eat, please let me know.

Thank you so much

Hello everyone,

I’m hoping to get some input or hear from others with similar experiences.

I’ve been diagnosed with gastroparesis and esophageal dysmotility, which my doctors believe are related to my severe dysautonomia and/or lupus. I had a GJ tube placed in October to help bypass my stomach, and for a while, it worked really well — I still had some nausea but could tolerate my feeds, and venting the G-port helped.

However, things have been changing:

April: I started having very high G-tube output (often 600–1000+ mL/day). Doctors confirmed the tube wasn’t blocked or displaced.
Since then: I’ve had worsening nausea and increasing vomiting, even with J-tube feeds.
Now (August): I’m struggling to tolerate my formula at all and feel like I’m regurgitating liquids or even choking when I try to drink. It almost feels like my motility issues are spreading beyond just my stomach and esophagus.