Sjogren's Syndrome Support Group

Sjogren's syndrome is an autoimmune disorder in which immune cells attack and destroy the exocrine glands that produce tears and saliva. It also associated with rheumatic disorders such as rheumatoid arthritis, and it is rheumatoid factor positive in 90 percent of cases.

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Difficulty Swallowing

I have always had some difficulty swallowing especially with rice, but lately it seems to be getting worse and more things that I eat seem to get stuck or hurt when swallowing. Today was the worst. I was eating some rice at lunch, it got stuck and would not move and was painful. I took three small sips of soda which did not budge it and only filled me up so I couldn't breathe. I had to let it come back out of my mouth and it either went down or came back out. I am not sure. Was horrible as I was in a restaurant. Embarrassing and left me hungry.

Anyway, does anyone else have this problem and what have you or your docs done to help with it?

Thanks for any info..............

Replies

deleted_user
deleted_user

Yes, sometimes I have difficulty swallowing especially dry foods. I always make sure that I drink water before I begin eating. I
sandyclause
sandyclause

I also have trouble. Sometimes it is because of dryness. Sometimes it seems as if my body forgot how to do it and I almost start panicing because I can't get it to work. I heard that is part of Sjogren's. I also make sure I drink water or something before I eat something dry.
deleted_user
deleted_user

Thanks for your replies. I never thought of it that way but I too sometimes feel like I forgot how to do it or can't or something and I panick also. Then suddenly it works again. Very weird. So, you were told that is from sjs huh? Wonder if it can be neurological where the message isn't being received by the brain. But, I also think sometimes I am afraid of the pain it might cause since it can hurt when it finally goes down so I won't let myself. Not sure. Thanks again to both of you for your responses. Have either of you spoken to your doctors to see if there is something to help with this. I have not yet.
deleted_user
deleted_user

I also have problems swallowing. My GI did an upper endoscopy in Nov. just to make sure everything was ok, because I've had all kinds of GI problems, but thankfully everything was fine with the endo. My rheum. just put me on to new scripts for dry mouth one is a saliva subsitute and the other is a lozenge and the both seem to be helping with the dryness and swallowing, things still get stuck, but I have to admit I haven't been using the lozenges as much as I should. The new meds are Numoisyn Liquid and Numoisyn Lozenges they might be something you might want to ask your rhuem. about, they will also help protect your teeth.
deleted_user
deleted_user

swhoff,

Thank you so much for the info on the meds. I will ask him about them.

Thanks again.
deleted_user
deleted_user

I go through spells where I just can't swallow. It feels like (and may be) I've swallowed a bunch of air under the food - nothing moves. If I try to belch, the whole swallow of food comes back up and I spit it out.
As with you, even fluids won't go down - so something has to come back up.

Also,my Sjs has formed a cleft palate in the back of my throat. (This is a real problem when I'm having a flare -I've quit breathing and lost consciousness four times in the last 5 years.) I try to swallow a bolus of food and it goes up, not down. It gets stuck and I have to "snort" real hard to pull it back down into my mouth so I can spit it out. Sometimes, this doesn't work. The last time this happened, I woke up to an ambulance crew working on me. (I was in a restaurant.) My O2Sat was 73% and I was refusing to go to the hospital. (Of course, knowledgeable people would know that a person with that low O2 sat are unable to make decisions for themselves.) The police also came and it seems I told them I took Oxycontin for pain. (I don't remember this at all.) The police jumped to the conclusion that I had overdosed on Oxycontin and called my husband to come to get me. At the time, his other vehicle was in the shop and he had to get his mother to pick him up and bring him to get me. (He didn't know what had happened, only what the police had told him.) The whole thing was so embarrassing, I wished at the time that I hadn't woken up.

There are some foods you should stay away from, and one is rice.
Others include ground beef and cornbread. Make sure to drink plenty before taking a bite into your mouth. I've found that ice tea or juice makes my mouth and throat more slippery than plain water. Too much water can dry out what little saliva you do have.

Good luck and take care.
Sally
dawnc4t
dawnc4t

This was one of the early symtoms I found with Sjs .I stear well clear of nuts cheese and bread well most dry food and always have a drink with my meal . I think it's not just that there is no slaiva to help with peristalis I think it might also be due to a combination of things for me I had oesophagits which then led to a hiatus hernia then bad acid reflux .It is a scary feeling and I am not sure if you guys also get the really bad mouth ulcers and this happens on my tomgue so it becomes really ubeareablw to eat til they heal over .
deleted_user
deleted_user

Before I was diagnosed I had trouble with swallowing and food getting stuck and the top of my mouth and cheeks would get sore. So, I was scared to eat. When I was diagnosed with Sjogren's the MD alerted me that I was a choke risk. Then he recommended a soft diet and to stay away from dry food. Sometimes when the food gets stuck it feels as if it's my last meal. Then I remember to calm down I take small sips of water and it still doesn't seem to move I continue to relax and the food finally works it's way down. I really have a lot of trouble with my favorite food potatoes especially french fries. I must eat with caution. The doctor told me this was because of the dryness and it is a symptom that is connected with Sjogren's. Sometimes I even have a hard time swallowing my saliva when I have some. My advice is when the food gets stuck try to remain calm and try to relax.
deleted_user
deleted_user

Thank you all so much for your information and advise. All I can say is this is one of the symptoms of sjs that can actually be scary. I don't see my Rhuemy until March but I will discuss with him since I never have before. Just want his input and advise also.

Thanks again.
willows4u
willows4u

Hi everyone;
I have difficulty swallowing things at times as well. It started off as just dry foods and escalated to even liquids and soft food.
I was told that the SJS and SLE have affected my nervous system because sometimes I have a hard time walking (like simtimes I go to take a step and my brain forgets to tell my legs to move and wham, I am on the floor) or sometimes no matter how hard I concentrate on holding something I just drop it. I thought that was the reason I had a hard time swallowing at times and never really associated it with being dry.
Like I said, there are times that even liquids seem to get stuck and I cant empathize with you whiteja because I have had it happen in restaurants as well. I can be sitting there eating and go to swallow and all of a sudden the food or drink gets struck and comes right back up. It has gotten to the point I don't go out any more!
I read everyone stating it happens with dry foods, but does anyone else have it happen with liquids like I do??
deleted_user
deleted_user

Yes, I have difficulty sometimes with liquids also. However, it will go down but it can be just as painful as when rice gets stuck.
deleted_user
deleted_user

I posted on here several months ago, asking for advice because of severe swallowing problems. I also have extremely dry mouth, but never had positive dx. I have all the symptoms though, and have MCTD. I had gotten to the point where I was unable to swallow at all, and was on a liquid diet for about six weeks. During that time I went to an ent Dr and was dx with celiac, and just recently my PCP did lab work that showed I have lyme co infection. Difficulty swallowing is also a symptom of lyme. I have four times the upper level of babesia, and am undergoing treatment right now. I just want to say, if anyone hasn't been tested for Lyme it might be worth it to ask your Dr. I still have all previous dx, mctd, and this is just another thing I happened to pick up. But it might help you to rule it out. I have improved some in my swallowing, and it's not normal by any means, but I'm hoping for more improvements. You can even write or call Igenix labs and ask for a lab order, and fill it out and take it into a lab yourself to have the blood drawn. Just a thought for you, and I sure hope you improve soon, I know how stressful and difficult it is. When it takes an hour to eat a small amount of food with two large glasses of water, eating becomes more work than pleasure. Oh also, the lyme form cysts that make it difficult to swallow. Take care, Judy PS I don't like to eat in public anymore, my stress level goes way up.