Does anyone else get really unwell with mouth ulcers

[bubblebutt88]

Haven't had one for ages but currently have 4 (!!!)

One on either side of my tongue, one on my inner bottom lip and one right on the back of my throat. Initially thought I was getting a sore throat then looked with my torch and saw a very angry red ulcer.

The pain is bad enough but it's how generally unwell they make me feel that really sucks. My head is killing, all the time. I'm taking paracetamol throughout the day and it's barely touching it. I feel drained and my glands are up.

I'm using mouthwash and salt water gargles but I know from experience that nothing really helps, it's just a waiting game. Anyone else?

I can’t say I do. I used to get them more often/severely but whenever I do/have, the only suffering is local.

Could it be in the other direction? I.e. you’re unwell so you’ve gotten the mouth ulcers because you’re run down?

I don't think so. I've had it before. It's just like the pain radiates to all other areas so in my head, ears etc.

They're not always this severe but when they are I feel so shit for days and days.

I used to get loads but then stopped using mouthwash especially straight after brushing my teeth and I haven’t had one since (it’s been over 2 years). I figured maybe my mouth is too sensitive for mouthwash?!

Yes but I have anaemia and also suspected autoimmune condition (currently on the path to being diagnosed), which go hand in hand. Have you any other symptoms? Sounds really painful, I know how horrible they can be, they can really get you down.

Are you sure you haven’t got hand, foot and mouth?

Have you seen your dentist when you have the ulcers? There are about thirty different reasons to have ulcers from being anaemic through to chronic disease , through to aphthous ulcers ie just one of those things.

If you feel really unwell you should get them investigated , probably some blood tests and take it from there. Best to sort out why you are getting them then you can be given ways of dealing with them or preventing them.

@bubblebutt88 you should really see your doctor and/or dentist if you’re really struggling.

like @Bigoldmachine my thoughts went to an accompanying autoimmune condition but I’m pretty immersed in that world due to my own health so take that statement with the large amount of bias behind it.

Your outbreak does sound at the extreme end of things, ulcers can be associated with so many different conditions I think it’s worth pursuing.

DH used to suffer a lot. Started taking omega 3 and now no longer gets them.

It's something I've always been susceptible to. I can go months without one or maybe get a mild one then something like this that wipes me out. I always put it down to being hormonal or run down.

I have autoimmune conditions and have struggled with mouth ulcers my whole life. An outbreak makes me feel really ill.
However, doing the Autoimmune Protocol diet for three months, not for the faint hearted, made me realise what foods I have intolerances to: gluten, eggs, oats and night shades. For the first time in my life I have had no ulcers in 8 months.
Doctors and dentists have not got a single clue what causes ulcers and have even less interest. ‘One of life’s small irritations’ is the general consensus. They were the BANE of my life.

I did see my doctor during a particularly bad flare up one time. He didn't do any tests but issued me a prescription of......bonjela.

So yes I don't think they do take it particularly seriously.

Doctors only recieve around 4 hours training on the mouth as a whole. You need to see a dentist who, if necessary, can refer you to oral medicine specialist. At the least blood tests would be a start .

Bonjela is hopeless, there are a whole panoply of things that can be used but first you need to find out what causes them.

it is true that most ulcers are aphthous ulcers ie we don't really know what causes them , but some things like sls , spicy foods , stress can set them off.

However there are thirty plus other causes of mouth ulcers that can be diagnosed and treated.

I was thinking something autoimmune too if they coincide with you feeling unwell. It would be worth seeing a dentist if you can.
Make sure your toothpaste doesn't contain sodium lauryl sulfate as this can cause mouth soreness and ulcers if you're sensitive to it.

I have worked in oral med clinics and will confess to be one of those clinicians who sort of inwardly rolled my eyes and gave a prescription for difflam and advised warm salt mouthwashes. I then developed some kind of hormonal related oral ulceration in pregnancy and I remember crying waiting to take my next dose of paracetamol (also didn’t know I was pregnant at that stage but anyway).

I don’t really have any answers but to say mouth ulcer can be so awful you have my sympathies. In saying that a referral from you dentist to an oral med clinic would allow you some blood test which can show deficiencies or autoimmune issues that can be managed, advise around triggers and also some weird and wonderful cocktails of mouthwashes that do work for some patients so there is help if not a cure. Hope you feel better soon.

I have constant aphthous ulcers. I was lucky that the GP was amazing and referred me for a colonoscopy and boood tests, because ulcers can be caused by bowel disease. That didn’t show anything. He referred me to the dental hospital who were fantastic. They did other tests and prescribed betamethasone tablets and orocort paste. The betamethasone is dissolved in a little water and used as a mouthwash then spat out. The paste is for overnight. It cuts the life out of ulcers after a day or two at max. I still get lots of ulcers but instead of 10 days of intense pain, they never get beyond uncomfortable and are gone within a day or so. I didn’t feel unwell but I know what you mean about the pain radiating to your throat, neck etc. the tongue ones are so very painful and made brushing teeth, talking, eating agony. I would push for blood tests, colonoscopy and then if all is clear, a referral to a maxilo-oral consultant because even if they end up not finding a cause they can definitely significantly improve your quality of life . If your GP won’t do bloods or colonoscopy referral the oral medicine department can arrange them. You have my sympathy.

My son in law suffered badly with mouth ulcers until he started to use a vitamin mouth spray. Didn’t get any help from his GP about it - the sprays were a suggestion from a pharmacist. As far as I know, he hasn’t had an ulcer since.

Any chance it's oral herpes? That would explain the flu-like symptoms.

I used to get them until I twigged that I was allergic to Sodium Lauryl Sulphate, which is in loads of toothpaste brands and other health care products.

Are you sure they're ulcers and not herpes, hand foot and mouth or something else?

I used to get really bad, very painful ones if I forgot to take my B vitamins. Also ever since I took a course of iron supplements I never tend to get them any more.

In my case they were due to vitamin/mineral deficiency

I immediately thought autoimmune too. I had mouth ulcers before my coeliac diagnosis. I still get them when my iron is low

Likewise. I used to get constant mouth ulcers, as did my immediate family, until I read an article in my late teens which suggested that sodium lauryl sulfate was a cause of a lot of them and that cutting it out would help. I thought I didn't have anything to lose so switched toothpaste, shampoo and body wash (it's a foaming agent so used in all three) and now only get ulcers very periodically - usually when I'm extremely stressed or if I bite the inside of my cheek. I recommended it to my family and they've had the same experience. Definitely an easy switch which could help!

please don’t be put off repeatedly seeing your GP or dentist (I think you may have better luck with your dentist fwiw), they do tend to adopt a wait and watch approach with ‘minor’ symptoms because it’s more common that they will resolve spontaneously and it’s not caused by anything needing their intervention, unfortunately that also means if they haven’t seen it they aren’t really able to judge the scale of the issue.

I have two autoimmune conditions (psoriasis and multiple sclerosis) and getting the MS diagnosed was a shock. I was very selective about what would motivate me to get in front of the GP because I’d been brushed off so much in the past. It was pure dumb luck that one complaint got me in front a fabulous doctor who went all out to get to the bottom of my symptoms. Since receiving the diagnosis it’s knitted together so much for me about why I’ve been experiencing what I have. For a number of years actually.

I’m not saying you may be suffering from something really serious but I am saying that there’s good reason to investigate the cause because there may be a way to manage your health and leave you feeling much better overall.

I used to get mouth ulcers all the time as a 20 something when my diet was crap and I wasn’t really taking care of myself. Now I’m 60 something and haven’t had any for decades. How is your diet OP?

I have a vitamin B12 deficiency that causes mouth ulcers (among other symptoms) when I'm low. Oral sublingual B12 spray or patches from amazon sort me out.