Mouth ulcers: Hi, just a quick question... - Fibromyalgia Acti...

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Mouth ulcers

Sdrh profile image
Sdrh
39 Replies

Hi, just a quick question. Does anyone suffering with fibro keep getting mouth ulcers? ❤️

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Sdrh profile image
Sdrh
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39 Replies
desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee

due to the large population with fibro then this answer will be yes. But that will not be really helpful. If you are asking if this related to fibro then it would not be something that would be attributed to it.

Makie-Uppie profile image
Makie-Uppie

I have just had a bout of mouth ulcers accompanied by a crusty thing up the hooter, they hung about for a month and then healed up, dare I say it, could have been a virus, aaaaaaaaaargh!.Might be vitamin related if they are chronic.

I must add that I have also been found loitering around the baby aisle though it is about forty years since I was actually involved with a child that young. I have been purchasing Bonjela, it may be more to do with the fact that I do like the taste, but it does help the nasty little things.

Sdrh profile image
Sdrh in reply to Makie-Uppie

Hi lol thank for your reply….. I seem to be suffering a lot with my cold sores……had them damn things since being a child! 🙄 which only used to occur in adulthood when I was rundown or stressed, can feel another coming grrrr!!! As for the mouth ulcers, well very rarely if a tooth rubbed, but this last few month it’s about every two week ! I was surprised when I told my dentist I had fibro that she mentioned how it affected the teeth and mouth….. I will have to ask her again cos it was a while ago and I can’t remember lol x

luckylou52 profile image
luckylou52 in reply to Sdrh

My teeth have so much pain and my dentist told me it means my teeth are a pain tender spot. She said any time I’ve got a virus or fibromyalgia playing up my teeth will hurt and she’s so right.

in reply to Makie-Uppie

I can relate to "crusty thing up the hooter".Have had blood clots for years which treatment has not cured and wake up every morning with them.ENT gave no clue who also stated I don't know what your bruising (top of nose)is.also have recurrent mouth ulcers which are a symptom of Lupus.

Sdrh profile image
Sdrh in reply to

Thank you! It’s dreadful isn’t it lol. My daughter as you will probably have read has lupus which his making me think….

in reply to Sdrh

lupus has many pointers-fibro and raynauds being two.I have never been told Fibro affected teeth -in what way?decay?symptoms get dismissed because Doctors only consider bloods not always symptoms when bloods are not always conclusive .

Sdrh profile image
Sdrh in reply to

I actually not sure about the teeth but will ask when I next go. I was as surprised as you tbh ! I thought it was all about pain and fatigued but I’ve had my eyes open end lol x

Makie-Uppie profile image
Makie-Uppie in reply to

Perhaps it is not appropriate but I do love that film, one of the best ever made IMHO.

in reply to Makie-Uppie

so true.one of my favourite films as is Inn of the Sixth Happiness

Gigiruth profile image
Gigiruth

As mouth ulcers are also a sign of the body being run down and linked with autoimmune disorders which many people have in addition to fibro. I often have mouth ulcers and have to step up self care and scale down what I am doing. I have not been told by my consultant it is part of fibro,

SCMW profile image
SCMW

Mouth ulcers specifically can be an indicator of another auto immune disease. I have FMS but was diagnosed with a form of vasculitis (Behcets) some years later. They can appear with lupus, Behcets & others. I’d suggest keeping a photo diary which clinched my diagnosis. If the ulcers are recurrent, very painful or you have a lot of them, there is something they can do about it. Mine did not settle until I was on colchicine, but topically you can get small steroid tablets which stick to the mucosal lining in the mouth & also a triple mouthwash now manufactured as triarisol. If anyone reads this and also gets genital ulcers, that occurs with Behcets and can be treated with potent steroid creams, such as synalar, inhalers etc. So again keep a note and don’t suffer. If you’re ulcers are affecting your quality of life, eating etc then they need treatment, most likely systemic. Hope this helps.

Sdrh profile image
Sdrh in reply to SCMW

Thank you for that. My daughter was eventually diagnosed with RA and lupus some years ago, which mimicked my symptoms from going back years. I have had a couple of inflammatory marker tests that’s come back clear. My daughter had a test that took ages to come back, not quite sure what that was. quite interesting reply though thank you I will mention the ulcers at my pain clinic assessment.

SCMW profile image
SCMW in reply to Sdrh

That’s ok and that makes sense. My CRP and ESR have never been overly high or not been up at all. Some of these diseases don’t show via blood test (like Behcets). Similar to you, I’m the daughter treated at the Royal London & my mother was sent to Guys lupus unit. She had one positive test for APS and has a history of connective tissues disease. She has had IGA vasculitis & has undifferentiated connective tissue disease. Unless she shows any other symptoms of lupus or other specifics. I was recently looking at the assessors handbook for attendance allowance for my mother which they also used for DLA - it really plays down ulcers as no issue. They have clearly not included guidance for people who can’t eat, or who have ulcers anywhere in the mucosal tract which can be debilitating. I saw your comment in the summary emails from health unlocked - if I see ones like yours I always reply, because we have had grand parents, cousins, aunts etc all affected. It can take a long time to get diagnosed. Any questions please let me know & best wishes to you both.

Sdrh profile image
Sdrh in reply to SCMW

Thank you so much!!! I just wonder how people get tested and looked into so deeply as I just seem to get fobbed off! ‘Your bloods are fine’ then that’s it! I have moaned over the years to the drs about aches and pains etc and nothing has really been done till I got told it was fibro around march last year. And even now I’ve had no follow up appt are anything. I really appreciate your knowledge and replying it means a lot. Currently I’m off work with sickness! Been a while since I’ve been violently sick! The pain all over my body is horrendous. It’s just so constant isn’t it. Thank you again, I appreciate all you can offer x

SCMW profile image
SCMW in reply to Sdrh

It takes a lot of persistence unfortunately & sometimes you just don’t have the energy from experience. It pains me to say it but it really got clenched for me through private healthcare & photo records. But for a long time I was told my bloods are fine - the ulcers were the main feature of Behcets. I had to drink all the time because of the pain, I drooled overnight onto towels & had to liquidise food - I have no idea why I thought this was something I had to put up with! I got to a point where I could not walk - then it started from there. Huge improvement on systemic medication. I was diagnosed at 18 with FMS and was never really well, diagnosed in my late thirties in 2018 with Behcets. My mother - recorded in her notes but wasn’t told, properly looked at just before she was 80. The pain levels lift a lot if you can tolerate a low dose even of amitripyline, nortryptyline, now apparently the up to date treatment is low dose naltrexone. I get by on nortryptyline as I work it’s less drowsy, a beta blocker for migraine prevention and colchicine. One of the best things I did for both of us was ask for hospital & gp notes - list down results of tests, major symptoms etc. Behcets is rare - I ran my symptoms through Isabel the medical checker & there are about 6 - 2 of them correctly identified Behcets from symptoms. At least that enables you to keep an eye on the overall picture as rheumatological diseases can have disparate symptoms. Honestly any questions please ask.

Sdrh profile image
Sdrh in reply to SCMW

Oh wow you and your mum have been through it!Will the pain clinic look deeper into things when I see them? How do I request dr and hospital notes? Tia x

SCMW profile image
SCMW in reply to Sdrh

It’s a journey for sure - unlikely at the pain clinic as they seem to be more symptom based than root cause, more rheumatology I would guess. Re notes - google/ phone, they should tell you - our hospital had a form online you filled in - it’s a subject access request I think. I just said we were piecing together medical histories. One other thing for ulcers - boots mouth ulcer pen, numbs them down when you are on the go. Best wishes.

Sdrh profile image
Sdrh in reply to SCMW

Thank you!!! For everything ❤️ Take care x

Makie-Uppie profile image
Makie-Uppie in reply to SCMW

I have just found out something I don't have, ulcers on the undercarriage, some small cause for celebration. as for bruising on the nose, isn't there a kind of rash mark associated with hereditary lupus on or around the nose. Might be talking out of my non ulcerated area here though.

SCMW profile image
SCMW in reply to Makie-Uppie

Hi, not sure if for me or author - but to other readers when I was asked do I get genital ulcers, I said no - what they actually found was scarring from ulcers so I didn’t even know I’d had them or associated it with something else. Think re mark you might be thinking the butterfly rash, it’s quite distinct across the nose and cheeks. Best,

The fact that fibro causes so much fatigue, I think ulcers will then coincide with that - I get them a lot, unless I sleeeeeep… I think multivitamins can help, but the main thing is rest x

Sdrh profile image
Sdrh in reply to PenelopeClearwater

Hi and thank you. Rest is deffo the key. I’m worried my work is going to become too much as summer kicks in but I don’t want to give in to it either.

I thought I struggled, I know I’m getting worse, but wow some people on here are really struggling! X

PenelopeClearwater profile image
PenelopeClearwater in reply to Sdrh

It’s definitely nice to come on here and share - you get so many perspectives and know you’re being understood. The best piece of advice I’ve been given is not to compare yourself to healthy people, or people with fibromyalgia 💙

Sdrh profile image
Sdrh in reply to PenelopeClearwater

That’s very true. We are all so very different x

PenelopeClearwater profile image
PenelopeClearwater in reply to Sdrh

It’s important to remember that regardless of what other people go through, your symptoms and journey are still valid! On the flip side, it’s also nice to know things could be loads worse 😅x

Sdrh profile image
Sdrh in reply to PenelopeClearwater

Lol I know, I know I’m getting different symptoms now so just asking the questions and absorbing the info I get 😍 xx

Ladame profile image
Ladame

Hi, I do! I often have small ulcers on the edges of my tongue. My dentist can’t find any reason nor my gp. I’ve had blood tests for coeliac and inflammatory bowel disease and all fine. The dentist said it could be a genetic predisposition the pharmacist said a lot of people on methotrexate get them - I have RA - so who knows why? 🤪 I was given steroid tablets to dissolve on them which helped . Hope you find something which works for you- let me know if you do!

Sdrh profile image
Sdrh in reply to Ladame

Thank you!! It’s all so very odd isn’t it lol.

Lestor profile image
Lestor

Yes I get them every few months so I take a prebiotic daily and use an ointment called Oracort E which usually clears it up

Kitten-whiskers profile image
Kitten-whiskers

I certainly get my fair share of them and what I find extremely helpful is Boots own Mouth Ulcer Gel - it's amazing stuff, went to get some last week and they had sold out

Sdrh profile image
Sdrh in reply to Kitten-whiskers

Thank you I shall try get some. They so debilitating aren’t they!

Kitten-whiskers profile image
Kitten-whiskers in reply to Sdrh

Definately, once I had about eight in one go huddled at the back of my mouth surrounding a wisdow tooth, everytime I moved my mouth - the wisdom tooth would catch on the ulcers - it was horrendous, I ended up getting a terrible infection

Sdrh profile image
Sdrh in reply to Kitten-whiskers

Omg! I have one big one scraping a wisdom tooth and that’s bad enough! The rest are further to the front. Spoke to my dr yesterday and about the nausea I’ve been having and he blamed my tablets 🙄

Kitten-whiskers profile image
Kitten-whiskers in reply to Sdrh

I was told by the endocrinologist that it was down to my immune system

Sdrh profile image
Sdrh in reply to Kitten-whiskers

My dr are always locums, if that’s how you spell it! It’s like they can’t be bothered

Kitten-whiskers profile image
Kitten-whiskers in reply to Sdrh

None of them are these days, thats why I have stayed away for years and years

Sdrh profile image
Sdrh in reply to Kitten-whiskers

Yeah I can see where you’re coming from there!

Kitten-whiskers profile image
Kitten-whiskers in reply to Sdrh

It's not been a bad thing, because I got my health alot better than it was 🙃 they wanted to mask everything with drugs which made things so much worse for me.

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