Hiatal hernia occurs when the top of the stomach pouches out of the area it should be in just a little. But the effect is that stomach acid and sometimes food can come up into the esophagus. It really is common and of course can be just a little pouching or a lot. Sometimes this reflux causes strictures in the esophagus that make swallowing difficult. They can be stretched by the GI DR if needed. But MCTD has the problem of the muscles of the esophagus not pushing the food down normally. This can also cause reflux as the muscles are weak. This can come and go as your disease gets more active and less active. I dont have a lot of swallowing problems but I do have a lot of reflux. When I have trouble, the food sticks in the back of my throat and I cant get it all the way down past my airway. Sometimes it chokes me. This is usually crumbly foods like hamburger or dry toast. I can eat something sticky, like mashed potatoes and get it down. But I usually just quit eating for a little while. Some folks on here have really had a time with it.
As for the swallowing test, this comes and goes, so you never know what will happen the day of the test. Good luck.
Mary Ann

Incredible reply, MT. Can't add to that much, except that my rheumatologist said dysphagia-- trouble swallowing-- can have several causes, and the peristalsis thing is only one of them.

Mine comes and goes, but can get pretty bad. My swallow study was a barium swallow, which I think is the good test. Mamometry, some of us believe, is just junk-- it's a research instrument, not a diagnostic test, and very unpleasant, does not provide much clinically useful information. The tech watching the barium swallow was really clear with me: "Oh, yeah, you have dysphagia, moderate to severe."

In terms of dealing with it, I have several tips and tricks: (Apologies to everyone who has heard them before.)

* First, do not panic. Most important rule. Have not read any research suggesting this is a common cause of mortality.

* Remember, in an emergency? You can blow chunks anywhere if your airway does not feel clear. Don't worry about people staring at you in a restaurant, on a plane, etc. If you feel short of breath, expectorate the fricikin' food any way you can. Note: Just KNOWING that you have given yourself permission to do this can decrease anxiety significantly.

Always make sure you have a near-empty water glass on the table. I have, essentially, hurled into my water glass in a nice restaurant and had no one even notice except my wife, who barely noticed.

* Always have liquid when you eat. Always. But be aware this can occasionally backfire, and make you feel like you are choking. Even then? You can still hurl.

* When dysphagia gets bad, take smaller bites. Slow down. *Never* allow yourself to be pressured by waiters. Don't be afraid to say, "I have a medical condition, I won't be done for at least 15 minutes, please do not hover over the table. Thanks!"

* Let your friends know you sometimes have issues with this, and you can't do lunch in 30 minutes, that just won't be happening, like, ever.

* Wear a medic alert bracelet. Then, if you do have to barf in public, you just wave the thing in the air, and say, "Sorry, medical condition." You aren't being inconsiderate of others if this happens; it's not like you are double-parked talking on your cell phone or something.

Mary Ann & Cat--
Thank you so much. Your experience & insight is a lifesaver!!! I really appreciate the tips, very practical in any situation.
Question: I had wondered in the past if I should have a medic alert bracelet! Just wasn't sure what info should be on it since I have multiple issues. Do you have a medic alert bracelet?

I have developed Gastroparisis. My stomach is completely paralyzed. It doesn't churn my food any more and causes a lot of problems and thowing up. Apparently showing up uses different muscles. they made me eat a radioactive scrambled egg and put me in a cat scan, or mir, I don't remember which, took pictures and made me lay there for hours and took more pictures to see if the egg moved. it didn't.

but I have had some swallowing issues too. choke when drinking and even more annoying, choking on my own saliva. the choking seems to come and go.

@ Stephen: Bummer about the gastroparesis, don't know much about that.

But I hate the choking on saliva thing, man, that happens to me all the time. Worst is at onset of sleep, or during naps if I sleep on my back or even sitting up.

I also drool uncontrollably when I sleep, which is a real problem, given what a vain, self-absorbed b*stard I not-so-secretly am.

I like to think of myself as this dapper older guy who's aging somewhat gracefully, still does some sports, and drives a fast car despite being nearly disabled. The long strand of saliva that inevitably flows from my mouth onto my shirt whenever I take a nap (in the break room at the office where I used to work) is just totally not part of my image. I look like a drunk who is fresh out of surgery from a lobotomy.

Hallo,
I also had issues with swallowing at one time and then, after a while, it suddenly got back to normal again... It was at first a bit frightening because I had no idea what it was due to and the doctor could not give me any answer either. Fortunately my swallowing went back to normal after a few months and I thought it may have been a flare-up. I do hope you have the same good luck as well and the problem "goes away" very soon.
Please let us know how you get on with it and I send you my kind regards from Kristina.

Hi there-/
That gives me hope that your swallowing issue got better. Perhaps it was happening during times of flare. Maybe the swallowing issue was the flare. I didn't think of this & it is seeming to come & go now that I think about it. I am mindful of what I'm eating & making sure I have plenty of water on standby! I will keep you posted. Hope you are well.
Take care.

Yes, I have dysphagia too. Very frequently. I also take medication for GERD because when I don't I am in pain all day. I have had every test possible in the hospital and they can find no reason for my dysphagia. I agree with many of Cat's suggestions. If I go anywhere without water I have a panic attack and have to take Valium. I did a white house tour a few years ago and they did not allow you to carry water, so I had to get a doctor's not on a prescription pad. They let me in! (You can bring water to the WH now. I too have times when I can hardly swallow my saliva or drink anything. Pilocarapine helps. That prescription medication is for dry mouth. I don't know why it helps but it does. I am on it 3 times a day. And hello again everyone! I have been gone for a while... Gabrielle

I never knew that dysphagia was a symptom, too, but of course it does. I choke on my own saliva all the damn time, I hate it -- it feels like I'm failing at being human!

I had a Nissen fundoplication (https://en.wikipedia.org/wiki/Nissen_fundoplication) for a very very severe hiatal hernia about seven years ago, before I was diagnosed with MCTD. Best thing I have ever done -- I haven't had heartburn ever since then, not once. A side effect, though, is that you cannot ever vomit again, and you likely can't burp again, either.

*shrug* It was worth it for me, but YMMV.

Glad this thread is still active. I should note that dysphagia is one symptom that has NOT improved from using CBD, and may have even gotten very slightly worse. This would make sense because CBD oil does slow muscle contractions, so for Steven, CBD might be a no-go.

On my camping trip (we actually sleep in a farmhouse, but cook outdoors) I really freaked out my friends hawking up food that was caught in my throat. I had to tell them, "Guys, I appreciate the concern, but every meal is like this. If you keep asking me if I'm all right, it just makes me nervous."

The other weird thing I have noticed is that sometimes dysphagia is worst at the beginning of a meal. I do not know why that is. Sometimes after the first half dozen bites, I just swallow and chew more deliberately, and it seems to help.

Meera I also had a Nissan fundoplication 3 years ago and had a hiatal hernia repaired. That was the best thing that I ever did as well. I went from eating 2 full bottles of tums a day and a gallon of milk a day to no tums and just one glass of milk a day. I can burp but not as much as I could before the surgery. It didn't stop my swallowing issue but it did stop the feeling that something is caught going down. I am glad to see that someone else has had the surgery and got awesome results.