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Thread: Tounge Swelling & Painful Swallowing

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    Question Tounge Swelling & Painful Swallowing

    I don't remember when these symptoms started but it happens pretty often and mostly later in the night.

    My tounge only gets a little swollen on the right side..not too swollen and it is painful to swallow.It feels as if the muscles in my tounge are sore and my glands
    also get swollen which makes it even more painful to swallow.


    Does anyone else have this problem & if so what do you do?

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    Some things from my experiences...

    Have you been tested for angioedema? Specifically a C1q deficiency? It's something I was recently diagnosed with, but I don't have the external swelling or my throat closing up as many do. It's supposed to run hand in hand with lupus and other AI diseases. It's a very sensitive test and rarely caught. I'm still learning about that one.

    My saliva glands do swell at times and always bother me... docs think I have sjogren's and that's causing the mouth and throat issues. I have a very dry mouth and throat. When I put flavorful or even dull tasting foods in my mouth, my glands will squeeze tight and hurt...then they relax while I finish eating or drinking. Sometimes when the pain hits, the agony will travel up my face.

    Could be an allergic reaction to something. Have you talked to a doctor about it?

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    Wow..you just completely blew my mind.

    No I have not been test for angioedema but I just read some things on a few websites
    and it sounds like that definately might be it. I have before told my doctor that out of nowhere I will get lip swelling..or my elbow randomly grow a welt that hurts..and my glands also do what yours do while eating I totally know the face you are talking about...I have to push on my gland to release saliva and make the pain stop.

    I am on my 5th Rheumy and only one of those 5 I felt really listened to what I was saying and didn't just brush it off to nothing. I have an appointment with my nephrologist
    this week so I will ask him about this and if I can be tested for it. I also have an appointment with a new Rheumy hopefully she'll listen!

    Thank you so much for your response..it helped & ment alot.
    I hope you are feeling well and that we can get to know eachother better.

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    Quote Originally Posted by abbasgirl View Post
    Some things from my experiences...

    Have you been tested for angioedema? Specifically a C1q deficiency? It's something I was recently diagnosed with, but I don't have the external swelling or my throat closing up as many do. It's supposed to run hand in hand with lupus and other AI diseases. It's a very sensitive test and rarely caught. I'm still learning about that one.

    My saliva glands do swell at times and always bother me... docs think I have sjogren's and that's causing the mouth and throat issues. I have a very dry mouth and throat. When I put flavorful or even dull tasting foods in my mouth, my glands will squeeze tight and hurt...then they relax while I finish eating or drinking. Sometimes when the pain hits, the agony will travel up my face.

    Could be an allergic reaction to something. Have you talked to a doctor about it?
    Oh wow, I have the same problem, when I eat. I always say it feels like my glands are cramping, it is a very bad pain.

    Debbie

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    good morning K.

    many of us suffer with swelling of the tongue and lips. Sometimes i feel like my tongue takes up my entire mouth. My lips will swell and feel like they are chapped.....these symptoms are usually one of my first signs of an oncoming flare.

    i don't have a solution, i use a lot of chap stick.
    Phyllis

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    I wish I could find some easy to understand, clear cut words that explain the connection between angioedema and lupus. I've been looking for a couple of months now and I keep coming up empty. All I know is the hematologist and my pcp said the two run hand in hand, but it's rare...the C1q deficiency. It's so confusing.

    So I'm not the only one with sore touchy glands. Is it awful or what?! (((Hugs)))) to you all. Mine stopped the day after I got a shot of decadron and stayed away for a whole two days. It was bliss! AND I had little trouble swallowing too. But it all returned.

    Kgrams...that sounds like Sjogren's... that you have to squeeze the glands like that. Bless your heart...mine isn't that bad. They just squeeze tight, hurt, and at times the pain travels up my face.

    It could be Sjogren's...it could be the deficiency... it could be Lupus all by itself... it could be anything. That's what I get when I ask the docs. We're always left with, all we can do is treat the symptoms. But no one is treating my dry problems as of yet.

    I do have a theory about relief from the dryness. I can drink water till the cows come home and still be so dry. So I tried some mineral water that has electrolytes in it one day and felt a difference. Not a significant difference, but I'll take any relief I can get. It seems to me that if you have a disease like Sjogren's or any major dry condition, that plain water may not always cut it. Maybe something more is needed like electrolytes, to help hydrate the body. It's just a thought and I'm only now experimenting with it this past week. I've been drinking one a day. I feel a slight difference. I'd like to try two a day but my digestive system doesn't like electrolytes for some reason...so I'm waiting for that particular flare to calm down and then try two a day.

    Hey Kgrams...keep us posted on how you are and your appointments, okay?

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    Quote Originally Posted by mountaindreamer View Post
    good morning K.

    many of us suffer with swelling of the tongue and lips. Sometimes i feel like my tongue takes up my entire mouth. My lips will swell and feel like they are chapped.....these symptoms are usually one of my first signs of an oncoming flare.

    i don't have a solution, i use a lot of chap stick.
    Oh, how awful. What do the doc/s say about that? That the Lupus is the culprit? I'm trying to understand more about this C1q deficiency/angioedema. If Lupus alone is the factor and if it does indeed run hand in hand together, how that happens. One doctor told me it was amazing my rheumy found it because it's hard to catch. Could I pm you? I need to ask you about your doctor... I appreciate my last rheumy but she won't think outside the box. Kwim? And there's no way I'm going back to see that hematologist. Lol.

    I used to buy a lot of chap stick, but now I buy that Nivea kiss of moisture. That stuff is awesome. One of those lasts me a long time. Have you tried it?

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    of course you can pm me....i will send you a friend request.

    i am having a tough day, so going to sleep, but i know tomorrow will be better and my mind will work better.
    Phyllis

    share a smile today

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    i just found where we are already "friends", so please pm me with any questions.
    Phyllis

    share a smile today

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    Okay.

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