Excuse the up the nose shot. I think I am willing to share a bit too much but I can't get an explanation from a doctor! It has happened only a few times but it is quite alarming when it does. I am just sitting there when all of a sudden it feels as if my mouth is full of balls and it hurts. Could this be vascular inflammation from EM ? One doctor said she couldn't explain why but it seems to be swollen saliva glands but I am not sure if it is a gland issue or more of a vascular one. It lasts a few hours at a time then just goes away on its own. I hadn't eaten anything different in the hours / day before hand. I was just sitting there and BAM! there they were . I was having mild burning on my cheeks at the time so I wonder if related to EM.
I haven't had this but I will try to find out more about this if I can. I am so sorry it looks very painful. I am going to try to do some research on saliva glands or muscus membranes and EM
That looks really painful - Im so sorry you have this - bless you. Stupid question -have you tried that numbing mouthwash or lidocaine gel to at least try to get momentary respite?
That is exactly how my eye lids are affected. As you know they operated 3 times last year to remove what they said was inflamed membrane. They look like your mouth 'balls'. I suspect that this is vascular swelling. My eye lid 'balls' also come/go. What frightens me is my eyelids stick to my eyeballs - I cant open them. I have to wait until it goes of its own accord. You cant even bear to try to gently rub them. That is definitely drying of mucous membrane - Jordy is right. Its actually very much like Sjorgens syndrome.The pain is incrediible - as are the eye flares. False tear gels do not help!
I get the burning in my throat- which affects my voice. The mouth burning is so horrible for you blue- Im so sorry. This really is a wicked thing.
This is just part parcel of us having chronic systemic EM. It affects everything - even the organs.
You are so sweet to take the time to investigate Jordy. Thank you so much. I tried looking but couldn't find anything other than burning tongue syndrome which I do get....It's just EM in your tongue. Any how...I found that info but nothing referring to EM and saliva glands. Others are finding research papers I have never found all of the time so you never know what someone else will discover thank you again.
Alina
Jordy516 said:
Dear Alina,
I haven't had this but I will try to find out more about this if I can. I am so sorry it looks very painful. I am going to try to do some research on saliva glands or muscus membranes and EM
I am sorry your mouth is burning too. that is terrible. A Mads pointed out and I often forget about is what my doctor calls magic mouthwash. Thank you Mads.....I did use it on my balls and it does help. ( excuse me that sounds terrible looking back but you all know what I mean!) I was given this magic mouthwash be cause of my burning tongue. I haven't had my tongue burn for the last several months so I forgot all about the mouthwash!
For those of you with burning or painful mouths/tongues I suggest you ask your doctor for magic mouthwash. if that is just a nickname my doctor calls it the ingredients on the bottle read.....Lidocaine/Benadryl/Maalox
Swish and spit 15 ml twice daily.
It really numbs the mouth like you have been to the dentist but it doesn't last very long.
Mads mentioned the gel or mouthwash.
Tizzy I see you mentioned Lozenges? I AM TRYING TO THINK........Numbing lozenges not just fruity or cough med filled?
What kind of lozenges are you referring too tizzy that numb too? over the counter? prescription? It just sounds like a better idea because it should last longer and promote more saliva than just the mouth wash. Thank you all for your help. Oh! funny I should almost forget to tell you ! HA! They are back to normal now. Like the last few times it only lasted a few hours. I went to bed and woke a while later and it was gone!
Take care,
Alina blue said:
Hi Alina,
My mouth is burning today, among other parts of my body. No ulcers or sore gums like I sometimes get, though.
I had a look under my tongue and all looks normal. I hope you find out what is and hopefully can treat it as it really does look painful.
I'm glad to hear the 'balls' have resolved and that you found some relief while they were present.
blue
Alina Delp said:
I am sorry your mouth is burning too. that is terrible. A Mads pointed out and I often forget about is what my doctor calls magic mouthwash. Thank you Mads.....I did use it on my balls and it does help. ( excuse me that sounds terrible looking back but you all know what I mean!) I was given this magic mouthwash be cause of my burning tongue. I haven't had my tongue burn for the last several months so I forgot all about the mouthwash!
For those of you with burning or painful mouths/tongues I suggest you ask your doctor for magic mouthwash. if that is just a nickname my doctor calls it the ingredients on the bottle read.....Lidocaine/Benadryl/Maalox
Swish and spit 15 ml twice daily.
It really numbs the mouth like you have been to the dentist but it doesn't last very long.
Mads mentioned the gel or mouthwash.
Tizzy I see you mentioned Lozenges? I AM TRYING TO THINK........Numbing lozenges not just fruity or cough med filled?
What kind of lozenges are you referring too tizzy that numb too? over the counter? prescription? It just sounds like a better idea because it should last longer and promote more saliva than just the mouth wash. Thank you all for your help. Oh! funny I should almost forget to tell you ! HA! They are back to normal now. Like the last few times it only lasted a few hours. I went to bed and woke a while later and it was gone!
Take care,
Alina blue said:
Hi Alina,
My mouth is burning today, among other parts of my body. No ulcers or sore gums like I sometimes get, though.
I had a look under my tongue and all looks normal. I hope you find out what is and hopefully can treat it as it really does look painful.
Lozenges from chemist - ones for sore throat,that numb-you can just get them over the counter. The brands are probably not the same outside Australia but should be lots to choose from !!Ooops ,its Blue who needs them, in that case Cepacol or Strepsil. Also easier to keep in ahandbag if you are caught out and about. Tizzy
Maybe a dentist would know what they are if a doctor doesn't. Perhaps you might something on a dental site. The mouth is the only area that dentist look at.
I was at the dentist this morning and asked him about the repeated ulcers I'm getting in my mouth and sometimes, rarely, I feel a little bit of the membrane inside my cheeks peel away on my tongue. He asked me did I get cold sores and I said yes, when I'm sick, tired, stressed. and he said that the ulcers are related to the cold sores. Herpes virus. Not to worry. Very common. He did not tell me what the 'membrane/inner cheek peeling' was called but he said it's nothing to worry about.
I've been concerned about the ulcers for a couple of years. And I've had the occasional peeling from the inside of my mouth for many, many years. Yet I've always forgotten to address it with a doctor. And weirdly did not think to mention it to my dentist all this time. It's weird because I don't have good teeth and I spend a lot of time at the dentist. I've had plenty of opportunities to ask but always forgot. So every now and then I'd worry about it.
Anyway, that's 2 health 'concerns' that aren't concerns at all. I'll take that as a 'win' today.
I get the mouth burning too. Oh that can be painful & makes it very hard to eat. I too have that magic mouthwash stuff.
Blue--as for the repeated mouth ulcer's, have you been tested for Lupus or been checked out for Behcet's??? Classic signs for both of those diseases. I was dx'd w/Behcet's & poss Lupus. Herpes 1 or cold sores are usually outside of the mouth. Inside ulcers are cankre sores & maybe be sign of underlying disorder. Do you have a rheumatologist??
My cold sores are on my lips. My ulcers are inside the mouth. My explanation might not have been very good. I've never been tested for lupus or behcet's. Must look them up. I do have a rheumatologist actually, I think. He's my pain specialist and I see him for pain, but he's also a rheumatologist. I have an appointment with him on Thursday so I'll ask him about the ulcers. Thanks for the suggestion Hotmama. Love your 'name.'
Do you have any idea what would cause intermittent salivary gland inflammation that only lasts a few hours at a time and resolves on its own? I only ask you because of your medical background. I know I need to ask my doctor. I actually did once and they just said they didn't know. I always have so much to go through with them at my appointments and it wasn't happening while in the office so they just dismissed it. I know you can't diagnose... just some ideas then maybe I can try some things to attempt to prevent it because it is quite uncomfortable when it happens!
I love that Lemon Icy pop idea! Thank you Tizzy! I knew you would have a good idea.
I will give that a try and see if that manages it. If that helps them go down before the customary 5-7 hours then I will know it is EM or dehydration and go from there. If it doesn't respond to that and continues to happen now I know to ask about a biopsy if need be. Thank you so much!
I just saw this Alina. Those look like mucoceles to me. (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3467912/) I get them myself, right in the same place shown in the photo. Mine tend to enlarge during the night, and then become less swollen as I am up and about.
