Ulcers inside mouth?

[eloiuse]

Hiya, I know some people may find talking about inside a mouth a bit icky my friend does so I'm apologizing to anyone I upset. My mouth is in agony I have ulcers under my tongues into my soft pallet. It's that swollen my tongue seems higher in my mouth. The tongue is inflamed and large with ulcers coming from underneath too round the sides. My teeth now catch on it. The inside of my cheeks have ulcers on them and finally the back of my throat right up to the roof of my mouth has what only I can describe as lupus lumps where they are a circle like a bulls eye? Does anyone have trouble like that with there mouth? My doc said its just ur illness?? They were of no help. So I'm hoping for help here xx

[jazher]

Hi eloiuse,

I get ulcers all the time, but nothing like you are describing. They sound awful. Poor you that your doctor just thinks you should get on with it. They really hurt and i use bonjella, Have you asked your pharmacist if they have something that will help?

I hope you get some relief soon.

hugs, kel xxx

[eloiuse]

My doctor does not see fibro as a bad condition. The doctors there think it equal to a flu that takes a bit longer to get over. This site and the people on it are the only people who understand and take it seriously xx

[LindseyMid]

Have you got a diagnosis of SLE? Mouth ulcers like this can be a complication of Lupus I understand.

If you haven't discussed this with a rheumatologist, you may need to. It might be a sign of a Lupus flare.

In the meantime, asking a pharmacist for advice on temporary symptom relief is a good idea.

[eloiuse]

I have skin lupus. I also have all the 11 I think is how many there is pointers to lupus but I don't have a positive ana blood test so I don't have a rheumatologist. He said he didnt work with fibro patients as it isn't a real illness xx

[LindseyMid in reply to eloiuse]

What?!

In the US, they would use the diagnostic criteria, where you need 4 out of 11 criteria for diagnosis. Having a positive ANA is not essential for a confirmed diagnosis. I know it's not the case in the UK, but refusing you treatment and assessment until you have a confirmed diagnosis is ridiculous.

Lupus can be sero-negative at first, but that does not mean it is not there or that it won't become positive in blood tests in the future. You need to be checked regularly and probably need treatment now - uncontrolled Lupus can cause real damage to your body.

Please get a second rheumatologist opinion asap. The people on the Lupus UK HealthUnlocked community may be able to help with this,

[eloiuse]

I live just outside Edinburgh in Scotland. There's only one rheumatologist that also deals with lupus she said no and that was it. My doctor sent me to muscular skeletal clinic where they second fibro and dared to contacted the rheumatologist to ask for a second opinion on the lupus. She went mad and the letter she sent to my own gp was so bad my gp put a complaint in. So iv nobody else who will see me as nobody is brave enough to ho up against her. I phoned my doctor about my mouth for a appt. I got a call half hour ago from the receptionist saying the doctors wrote u a prescription without even seeing me ahhhh I hate the nhs xx

[LindseyMid in reply to eloiuse]

Please put in an official complaint about that consultant and consult PALS at your hospital. She is putting your life at risk by her actions and that is inexcusable.

I would suggest contacting Lupus UK (they have a HealthUnlocked community too) and getting advice or support from them.

[Jane64]

Hi elouise,

I get bad ulcers all the time, but not like yours. Mine are bad enough so you must be going through hell with yours, they sound awful!

I'm surprised your doctor isn't treating them separately anyway, despite what they may or may not be part of and I think it's extremely unprofessional to just assume that because you have fibro you just have to suffer.

Anyway, in the short term, I use Igloo for my ulcers. It's a bit like wax which you put on the ulcer and it sticks there. It's very very good, but a bit fiddly at first until you get used to putting it on. It can also be a pain if you put too much on as it sticks to other parts of the mouth!!

However, it is very effective and I almost forget about the ulcers for a while when I used it, it also helps to clear them up quite quickly too.

I hope this helps and that you get something sorted out soon, it's no fun to have to suffer like that.

[eloiuse]

Thank you for that I will get igloo at the moment I'm taking dihydrocodeine,ibuprofen and paracetamol every four hours at the moment. I'm going to phone my doctor in the morning and demand a appointment as my throat right down in to my wind pipe is in aging now too. The strange thing is that since this has happened my lower leg and foot have became far more swollen that usual? Thank to everyone for there advice and concern xx

[LindseyMid in reply to eloiuse]

Please get an emergency appointment with your GP. Lupus can affect a lot of different parts of the body and one complication can be APS or Hughes Syndrome (aka Sticky blood) which can mean higher risk of blood clots so DVT, stroke, etc. I am very concerned that you are showing signs of a Lupus flare and are not on any treatment nor being monitored at all for this.

[Butterfly54]

Hi eloiuse,The other thing your g.p and doctor should consider is Sjogrens syndrome.Do you also have dry gritty eyes annd generaly adry mouth.

Mine was picked up from the bloods I had taken when I saw rheumy about fibro.

In the states it is known as the kissing cousin to lupus.

I am now waiting to see rheumy in July and I show a lot of the symptoms lupus.

I get a very ulcerated mouth when having a flare.

I used to think that the dry eyes and mouth were just something peculiar to me.

And the ulcers were me being run down as I was sooooooooooo tired.

Do as Lyndsey says Hun and get yourself checked.

Love and hugs Butterfly xxxx

[Gracie59]

Please do as Lindsey says.

Plus, some anti-inflammatories can cause mouth ulcers - so it's possible that the ibuprofen may be making it even worse.

I get mouth ulcers as a result of taking Naproxen - an anti-inflammatory that is a bit stronger than ibuprofen.

Just thought I'd mention it - your symptoms are very worrying indeed.

[eloiuse]

Sorry iv not been on iv been beyond tired and peed off. I have a blood disorder which causes clots factor two lidens mutation I do also have sjogren syndrome but was told that wasn't what was wrong with my mouth? I'm still so tired iv got a super hubby who help me with most things. I'm gonna take his advice and rest this weekend. It boiling outside and I'm allergic to the sun so I will be resting in a darkened room. I hate being such

a freak xx

[dgleds in reply to eloiuse]

sounds like lupus

[Plumcake]

Hi Eloiuse

So sorry for you...I used to get very sore tongue and ulcer like lumps on my tongue. Hot drinks, fruit and any food was misery to eat.

Do you also have a dry mouth and maybe dry eyes too?

I have suffered these thrush like symptoms for many years, and was given Nystan pastilles to suck. Vile.

But I have since been diagnosed with Sjogren;s syndrome, which the dry eyes and mouth is a main symptom.

I thought the dryness and soreness in my mouth was due to the pain killers and when I stopped those it did ease up a lot.

hope you get some satisfaction soon. x