I have had some difficulty at times but never as bad as your problem. Sticky foods seem to work best, like a cassarole with everything in small pieces and held together by cheese! Liquids are the worst. Have you seen a speech therapist that specializes in swallowing therapy? I know that is not an immediate help, but they can teach techniques to help you learn to "swallow better"? Cannot figure out how to describe it! LOL! I have had patients that were helped with this. Hope this passes soon.
Mary Ann

Hi,

I looked into a speech pathologist at my hospital, but they did not take insurance. I need to look around and find one who does. Oddly enough, the dysphagia is gone today! Such a mystery...

Thanks!

Gabrielle

Hey, GAB, good to here from you out here, but sorry you are having problems with this. My dysphagia is bad, too-- sounds like it's not quite as bad as yours, but it's bad enough to scare my wife and friends sometimes.

When I stopped drinking, I noticed it took the edge off of it. It was still uncomfortable, but I lost a lot of the fear. And I wasn't drinking that much, either-- only a couple of drinks a night.

Well, actually, it was three. If you count the shots, more like five, and that's every night, except Sunday, when it was six.

Here's my theory: The dysphagia comes and goes, and has no rhyme or reason to it, just like the aches and pains, just like the mood swings, just like the headaches, just like every other symptom. If it were represented by a wave form, there would be peaks and valleys in an unending, erratic series with no pattern.

Booze definitely made the peaks worse. Ativan makes it worse also, but not as much, and it does keep you from freaking out and help you sleep. For now, I still take it once a day in small doses, but it's an even tradeoff.

I still go out to dinner, all my friends know they have to wait for me. If I'm in a new restaurant, I tell the staff I may take a long time. When it gets bad, I use CBT, heavy with the positive self talk.

What I tell myself is this: "You've never heard of anyone dying from this. In all the literature you have read-- and you've read a lot-- you have never heard of a case history that said, 'mortality was caused by dysphagia secondary to MCTD.' The food is in your throat, not your esophagus. You can still breathe. You will not choke; it's nearly a medical impossibility. The worst thing that happens is that you vomit, which has happened a few times. Those times, you didn't die either, and that was a while ago."

It's a rotten feeling, for sure. Damned uncomfortable and inconvenient-- and extremely stressful.

Cat, Thanks for your comments. I agree that it comes in waves for no reason at all. My mom, who is a psychologist, said it sounds absolutely terrifying. Yep, it is. I think the stress exacerbates it. There is a dysphagia center at Johns Hopkins, which is near DC, but I need to try the speech pathologist route first.

I do try positive self talk. Mine is usually, "There is no danger here. This will go away. It always does." etc. It does scare my husband and it always makes him feel very helpless. I have a very dry mouth so I take Pilocarpine twice daily. I may take an extra one )if I can) in when I can't swallow, and that helps sometimes.

It is the hardest aspect of MCTD for me to explain to people. They can relate to pain, headaches, fatigue and all of the other crap, but not the inability to swallow and the fear it causes me.

That is the good thing about this group; someone can usually relate to at least one aspect of your conditions.

I have spewed water all over the kitchen on several occasions!

Thanks,

Gab

Good news. I have an appointment with a speech pathologist next Wed. at the National Rehab Hospital. They, among other things, are experienced with dysphagia.

Cheers!

Gab

Let us know what she says and if it helps!

Last night was terrible; I just kept gagging repeatedly. Depression was definitely a factor; I took a low paying job in post production, and I'm not happy about it, but I'm also disgusted by community mental health, and I know I can't practice for a while even if I could find a slot in a private practice.

Grim determination is a big part of it: I need to eat the frickin' food so I can keep the weight on, and I need the weight so I can continue swimming and body-boarding. If I don't eat enough, I drop weight incredibly fast. Very small bites. Took me an hour.

My wife was asleep, but the sounds I was making must have been just terrifying. Thank you for reminding me how grateful I should be that my wife happens to be oblivious to this, or pretends she is. If she was freaking out, it would make it so much worse.

I wish we lived in the same town sometimes. I wish this group was more like AA in that way. I could probably take him out for a cup of coffee, we could talk it over, might ease his mind a bit. Of course he's scared-- if it were my wife, I'd be scared, too. But if he met someone else with the same problem, he might relax a bit.

Gab-
Good news about the speech therapist! I will be waiting for the results! Hope it helps.
Mary Ann

I too wish this was more like AA, Cat. I looked for a support group here in DC and I could not find one.

So, speech pathology was kinda a bust. It was the last resort, and I think I was expecting too much. I have this tendency to think, "This next doctor will cure me!" and then I am let down when I am told there is nothing he/she can do to help me. That is essentially what the speech pathologist said in a nice way.

I told her I have had all of the tests done and no one knows what causes my dysphagia. I also told her I engage in positive self-talk, deep breathing, and yoga. She said, "You are doing great." I know she meant that the tools I am using to cope with the dysphagia are great, but I felt like screaming, "I am not doing great! There are days when I can't even drink water with having a panic attack!"

I my mind, I was expecting to meet with her weekly for a few weeks and she would teach me all of these wonderful techniques to deal with dysphagia, but I am apparently already doing what I need to do.

She wants me to send her all of my medical records so that she can review them and consult with a neurologist, so I will do that.

I have a feeling the same thing will happen with the pain doctor I saw this week. She requested a MRI of my spine, but I don't think they will find anything. The response will be the same as my rheumatologist - There is nothing I can do for your thigh, lower back, and neck pain.

So, I will manage and move on. There are so many of you in this group who are sicker than me, so I really can't complain.

I can hope that each of you go into remission!

Thanks for all of the advice! Gab

It may not be much comfort, but I am glad you post about dysphagia because it makes me feel less alone. I have been feeling very isolated recently, and dysphagia is one of the things that makes me feel no one else feels the things I am feeling.

Please keep letting us know how it is going, and I hope it is okay with the pain doctor. My pain is a little better these days.

Right back at ya, Cat. I feel the same way.

I had huge difficulties with my eating and swallowing after suffering a stroke (I was unable to speak as well) and what helped me most of all were word-finding-exercises with a speech therapist as a stroke rehabilitation... Perhaps you could also find help from a speech- therapist who specializes in stroke-rehabilitation or perhaps you could find a way to exercises yourself with the help of speech-exercises from a speech therapist on the Internet and a friend could check-up on your progress? The key is exercises, exercises and more exercises...
Good luck from Kristina.

I also have this too it is because of the Sjogrens /Crest part of Mctd .I always carry with me bottles of water and avoid dry foods like cheese ,nuts,crisps etc. I find it hard to talk much as my mouth gets so dry .i find salogen spray helps a lot. The sicca symptoms mean no tears .no sweating very little saliva .Never thought about a speech therapist.
I hear you re the anxiety around eating I have modified my diet and as a vegetarian I tend to eat pasta as it goes down easier. Yours seems worse re water and even more restrictive sorry to hear that .

Hi,

Hi,

I carry a water bottle with me everywhere I go too. I would go into a panic without it. I take Restasis for dry eyes and Pilocarpine for dry mouth. I have difficulty talking sometimes too. Sicca is listed as one of my conditions, but I tested negative on the lip/mouth(?) biopsy.

Thanks for the advice!

Gabrielle