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View Full Version : Tounge Swelling & Painful Swallowing



K.Grams
05-29-2009, 09:42 PM
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?

abbasgirl
05-29-2009, 10:37 PM
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?

K.Grams
05-30-2009, 12:13 AM
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.

debbie-b
05-30-2009, 07:04 AM
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

mountaindreamer
05-30-2009, 07:16 AM
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.

abbasgirl
05-31-2009, 04:13 PM
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. :wacko:

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. :hissyfit:

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?

abbasgirl
05-31-2009, 04:22 PM
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?

mountaindreamer
05-31-2009, 07:19 PM
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.

mountaindreamer
05-31-2009, 07:22 PM
i just found where we are already "friends", so please pm me with any questions.

abbasgirl
05-31-2009, 07:25 PM
Okay. :cute:

MicRoMediC
06-01-2009, 11:41 AM
Throat swelling and airway swelling are a huge problem with me. I wake up in the middle of the night with my upper airway swelling almost shut and I can't swallow. I take a lot of antihistamines and sometimes I have to use Epi or intramuscular benadryl to make it stop. My glands also get swollen sometimes when I'm eating. I need to make an appointment with an allergist...anyway, wish I had good advice but I don't. sorry.

K.Grams
06-01-2009, 12:01 PM
Thank you for responding and it still helps even if none of us
has a clue how to help it.

My right eye is also swollen and has been for the last 3 weeks
and I can feel the eye strain when i look certain ways and it comes
with a migraine that hasn't gone away in the past 3 weeks that nothing
helps I've taken Tylenol, Ibuprofen, Vicodin and it does nothing. Is that a part of angioedema at all?

I went to 2 opthologists a week after it first started they both saw
nothing wrong and told me to "watch it" and see if it goes down and
if the pain got worse to go to the ER so I did..the ER doctor came in
didn't even ask me any questions or what meds i was on he told me it
was "just a migraine" and gave me meds in an IV..it didnt help at all.
So I went to a doctors appointment with a new PCP and she told me
to schedule a catscan and an MRI I will have those done on wednesday
but I leave for vacation to Colorado and I just want my eye & head to
feel better I can push through the body pain but my head is just killing me
I feel like i just want to rip my eyeballs out.

abbasgirl
06-01-2009, 09:52 PM
MicRoMediC...darlin' I feel so bad for you. That's horrible! I'm glad you're going to see an allergist. Please do that asap! That's scary.

Kgrams...I had a migraine like that recently...or at least that's what they tell me it was. lol. I think none of us really know. I ended up getting a steroid shot because my pcp was worried if it's inflammation then it could be doing some damage...since I had the pain so long. As to whether or not it's angioedema, I'm sorry to say I don't have a clue. I asked the rheumy who found it if that could be causing all or some of my pain. She said yes but couldn't elaborate. I asked the specialist she sent me to and she couldn't elaborate either. My guess is that the swelling it causes could cause pressure which could cause pain, but I've had an MRI that showed nothing unusual. From what I understand angioedema can cause a lot of problems, but so can Lupus, as can Sjogren's, and a lot of other diseases.

Limbo-land sucks.

I got the same treatment at my nearby ER...dontcha' just love those kind of doctors. The ER should have done a CT scan at least...grrrrr. I'm sorry you were treated like that.

Be careful about going on this trip. It could make your symptoms much worse. Did you tell your pcp about your trip and ask for some serious meds to help with it... maybe a decadron shot would help? If not, I'd call her office and ask her nurse about it.

K.Grams
06-02-2009, 01:27 PM
I'm so sorry you had a migraine like this..its awful and I wouldn't wish it on anyone.
And I definately dislike that doctors can tell us what can be causing it but don't say
anything else about it...Yeah the pressure in my eyes is just draining me and making
me miserable and ontop of that I have this huge ulcer on the roof of my mouth that
hasn't healed at all in the past 2 weeks and it could be only in my head but it makes
my head hurt worse....I just want to rip out my eyes or my brain!

It did slip my mind to tell my PCP about me going to Colorado(it's the first time i'll have
been on a plane!!!!) :) But I am calling the doctors office right now because the pain
is too much...my family never gets to go anywhere so the pain is making me not want to
go because I don't want to ruin it for my mom she deserves to relax and have a break.


uuugghh hopefully the doctors will be give a shot so that while I'm on the plane my eye
doesn't get too much pressure and explode. Lol

Thank you so much for helping me out it means alot.

dsunshine
06-02-2009, 01:31 PM
My tongue has never gotten swollen but I do have the sore throat issues when I am having a flare up sometimes or unable to open my mouth wide when I am eating. If it is too much I call my doctor and she usually increases my dosage of prednisone for a day or two.

abbasgirl
06-03-2009, 10:23 PM
Oh sweetie... and the ulcer adds to the pain too. (((hugs)))) I hope and pray you are able to get some relief and the trip is awesome for you and your family.