Behcet's Syndrome Society
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If swellling of the mouth common with mouth sores/ulcers?

Does anyone have swelling with their mouth sores? I havent got an official diagnoses but 2 specialist suspect BD. Even when the sores are tiny my lips are swollen (cheeks swelll if sores are in the back) and they hurt so freaking bad I think I must be crazy because they dont look that bad. I just havent found alot about BD and facial swelling. Does anyone else have painful swelling in addition to the mouth sores? thanks

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Hi Chelsealauer. I only generally get little ulcers but they hurt so much! Sometimes the whole side of my face swells up, my eye gets all sore and puffy and even my ear and scalp feel swollen, usually just on the one side.

When I was first being diagnosed with BD I took pics of the inside of my mouth to show the specialists. I took some pics of swollen, rough patches and when I blew the pics up it turned out the patches were made up of lots of tiny ulcers! They are called 'herpetiform ulcers'. But sometimes ulcers don't break out at all, they stay as just a little lump that hurts like mad surrounded by a lot of heat and swelling. I also feel quite ill - fluey, feverish and headachey and super-tired - along with it.

It's like an iceberg with me - 90 percent of whatever is going on is below the surface much of the time.

x J x

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That made me feel so much better...cause this week my lower lip (and now my upper lip) hurt in a new sort of way I am not use to and it felt like i had blisters in my lips but deep down so you really couldt see them except for like this tiny little white spot. I have come across that word to, the herpetiform ulcers and i think that is what i have to.....sometimes they are super close together and sometimes (like on the inside of my lips) it is more like poka dotted, all along the top lip. I kept feeling that the swelling was going all the way to my nose on a couple bad episodes because my face kind of came distorted from the swelling and i could feel tingling up to the top part of my noise. All i know is when i have more mouth pain, i have more swelling, fatigue, and confusion. So in a matter of an hour I can go from a relatively normally functioning person to not be able to get up. I have only had 1 flare up of my skin which isnt bad compared to the mouth ulcers....what scares me the most is my brain. a nurologist did 1 mri of my braimstem and it came back normal, her nurse said my mental issues must be caused by the pain and i asked if they would do a perfusion mri but they said they cant do (or wont do) any more test until I see a rheum doctor. My appt is thursdays so i am hoping they will run more test and agree to let me do an pMRI or a SPECT test. I really appreciate your reply...it is a rather isolating diease and I feel I am going crazy from time to time so I let myself have a quick cry and I pray and God helps me stay grounded.

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Wow, there is a lot here I can relate to. The blistery feeling lip thing - yep, I get that too. Again, all under the surface, nothing much to see. Also the confusion - snap! When I get a flare-up, I can't drive or even cook a simple meal, as I am in such a fug and soooo clumsy, stumbling all over the place and getting in a right muddle.

I felt certain that there was something neurological going on and had an MRI and was surprised (and of course relieved) when it showed nothing abnormal. And I also wondered whether they had scanned using the right parameters.

Then, soon after the MRI, the colchicine I had been taking for several months kicked in properly and reduced the length and severity of my flares, and yay! my neurological symptoms declined as well. That reassured me that whatever had been going on in my brain, it wasn't causing permanent damage, thank goodness.

I have been on a range of effective treatments for 3 years now and the difference is amazing. The best thing is, I can think and communicate again on all but my worst days. I've got my brain back!

I hope you get a diagnosis soon so you can get the right treatment. And fingers (and toes!) crossed that your first MRI was an accurate one. It's possible the nurse was being a bit simplistic in attributing your confusion to pain - the cognitive effects common to many inflammatory and autoimmune illnesses are very different from the distractedness that comes with pain. I worked through the pain of an ankle operation very easily, but there is no way I can work through the cognitive impairment of a Behçet's flare.

It is a VERY isolating illness. Social media has been such a help to me. Have you discovered any of the Facebook groups yet?

Good luck with your appointment on Thursday - let us know how it goes.

x J x

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O my gosh, you are a true blessing to right now...this was my first post and although i have tons of support from my family, they cant understand how miserable I am. I pray everyday that God gives me grace so I dont treat anyone rude or in an uncaring manner but it hard to feel so lost and out of it. I am sorry you have to struggle with all of this as well. I dont feel a have a horrible case of Behcets if I do in fact. have it just but the mental stuff is the worse in my opionion. There have been a couples times (maybe 3-5 hour time blocks) where I almost feel 90% like the old me mentally and it gives me hope that someday I will be the old me again. On the positive I am more grateful for things....like the ability to smile and laugh with my kids, or to kiss them without fearing the pain. Smiling is what I miss the most but I am just at the start of my journey so it will get better. 3 weeks ago i cut out gluten and dairy and i had to cut out most fruits this week.

I have not found a community yet but this all new to me..i think i have been having symptoms the last 2 years.cause i kept getting worse physically and mentally but it wasnt until nov.2017 that all the walls came crashing down and i could no long maintain any type of normal life. I was lucky to find 2 doctors that very quickly suspected behcets. God bless you and I hope your healing continues and your symptoms get fewer and farther between.

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Jaxxi, did you notice disruption with your sleep along with the mental issues. About a month ago sleep became something I dread, one reason is because part of me is afraid i wont wake up (i have had one real bad episode where I think I had a TIA or mini stroke...i went to the ER a day later but they said it was all in my head) and I have had a couple really sharp pains in my chest.....but also because my dreams. I have always been a great sleeper, a bad dream here and there but normally I like my dreams or i dont have any. Now every single night, even during naps, i have nothing but constant stressful dreams (not scary nightmares) but like everything is going wrong in my life, kids acting up, husband leaving me, getting arrested, mom being mean to me, etc....and i am left screaming and watching my life spiral out of control but im helpless to do anything...and i have more of those dreams where you know u are sleeping but u cant wake up and u are terrified and you are despritely trying to get yourself to wake up to make the terror end. I have always had dreams like this but maybe a couple times a year...now its every single night, the whole night. If i take a nap during the day i feel like i am having a panic attack the whole time.....i thought this might be related to the neuro stuff.....any ideas? I guess it could be my subcounsious...whatever it is, it sucks...lol

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Chelsey, my sleep habits are very easily disturbed by pain, stress, inflammation or often a combination of all 3.

If I am flaring I can sleep for England most of the day, and then sleep fitfully and feverishly at night. If I am stressed out mentally or emotionally, then yes, I can have terribly disturbing dreams and wake up feeling very ragged indeed.

What I find most helpful when I get into that state is to be extra careful about sleep hygiene. As a mum, it's hard to get away from pressures during the day, but I make sure I wind down properly before going to bed, with a nice warm bath or just a snuggle on the sofa. I resist the urge to look at my phone or ipad once I'm in bed - if I'm anxious about something I can end up googling for answers half the night! Instead, I choose a good book - something gentle, not a horror or a thriller. In fact, sometimes I deliberately choose rather a dull book, so it'll make me snooze quicker. I also turn off the wifi, and get the family to turn their phones to airplane mode, and no DECT phones by the bed either.

If I wake in the night and can't get back off again I make myself a chamomile tea. It's like a hug in a mug! Lavender oil is very soothing too , and I keep a little bottle on the bedside table and put a drop on my pillow if sleep eludes. But the main thing that helps me is not to worry about sleeping right through. In the old days before electric light, people used to naturally wake in the middle of the night, get up and potter about or read or chat (or make whoopee!) then go back to bed for a second sleep. I found that fascinating and it helped me to feel happy about waking up for a little read in the wee small hours.

Staying away from coffee and tea after 3pm is crucial for me too. And getting the bedding right. For years I woke up in a sweaty puddle several times a night then - duh! - changed my duvet for a thin cotton comforter. If it gets cool, I throw on a blanket. I'd much rather wake up a bit chilly than in a steaming fever. I think Behçet's has given me a dodgy thermostat, and getting overheated definitely leads to weird, vivid dreams.

These are all practical things that don't directly address your state of mind. Being on the verge of being diagnosed with a potentially nasty illness must be very worrying indeed, especially if you have a family to support. Is there someone you can talk to about those concerns? A counsellor or church minister perhaps? Or get them off your chest on here, or on a Behcets Facebook group. These forums talk about the emotional and practical issues around Behçet's as much as they talk about medical things. They are all part and parcel of managing the illness - and thank goodness, Behçet's CAN be managed.

Look after yourself, and don't forget to let us know how it goes on Thursday.

x J x

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Sharp pains in your chest - not a thing to ignore! Google 'costochondritis' - it's common in Behçet's. More of a dull ache usually, but can give you a sharp jolt if you change position.

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I just googled it and I think that was it! It was real sharp 2 times where i had to double over in pain and then it was a dull ache for the next 24 hours and it hurt to breath deeply. I am going to make an easy to read breakdown of my symptoms for the doc...my hope is with all my notes and referrals he will diagnose me right away and start ordering test...atleast with a diagnoses I can get back in to the gum specialist. Thank you again for taking the time to share so much with me....I feel much more empowered than I did last night. I am very grateful for your time and caring!!!

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Don't mention it dear, it's simply how we roll in the Behcet's community :-)

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Plaquenil has been the most effective in reducing/eliminating my mouth ulcerations. During a flare, I would get ulcers that wouldn’t heal for up to two months or more, and I experienced swelling at the site. I would say my mouth ulcers are 95% gone. I have even gained weight because I can eat without pain.

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Thank you for sharing!! and that gives me hope!

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See if your doctor will prescribe a prednisone taper to get your ulcers under immediate control, and at the same time start Plaquenil 200mg 2x/day for long-term prevention. I only rarely, maybe once a year, get mouth ulcers since I started Plaquenil. I also gained weight because I could eat without being in excruciating pain all the time!!

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My lips don’t swell. My tongue and teeth do. I get imprints of my teeth on the edges of my tongue. When I talk it sounds like I’m a deaf mute. Very painful. I get a variation of small and large. Very white with the red border and very everywhere. I’ve had over fifty at one time, on top of thrush. I did not have medication at the time because I was in college and doctors are dumb. I’d chew a bunch of tums and have it sit in my mouth with water for a while (bc as a kid, that’s what I thought I should do).

I meant to include this in your other post i responded to but when it comes to eating, I drink very cold ice water and just “Power” through it. I eat very slow, and it kills me but then like 5-10 mins in its like I hit this pain threshold and the swelling goes down and I can eat sort of pain free. That is the time i scarf down whatever I can. When I stop, the pain is intense again and the swelling comes back. Give or take five to ten mins. Hope that helps.

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Hi, I have a probable diagnosis awaiting seeing the COE. Yes, I’ve had swollen edges of the lips, all around the tonsils, throat and rear of the mouth where there is soft tissue. I think my symptoms first started with suspected glandular fever, ulcers, white throat & inflamed tonsils etc. People have commented before on my neck looking swollen, so it’s possible. Hope your symptoms improve soon, kind regards

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