Lost papillae, angular cheilitis AND Sjogrens AND fibromyalgia flare up!!!!!

Edited , 5 users are following.

Feeling a bit sorry for myself what with the 2 flare ups at the moment, (and the pain that goes with them), and the sore tongue and corners of my mouth, but wondered if any other Sjogren's sufferers, (and I am not using that word lightly), has this angular cheilitis?

In my extensive research, (ex-nurse, so naturally the nosey type), it would appear that the main cause of this cracked soreness at the corners of my mouth are caused by.....now this will make you laugh....EXCESSIVE SALIVA!!!! I wish!

I'm using lip balm frequently but that doesn't seem to be helping with the corner business but applying a tiny bit of E45 lotion does seem to ease the discomfort from it at least. I am really hating this most of all because it's constantly making me look like I'm having a badly applied lipstick day lol

Oh and if anybody has any suggestions to help with the tongue soreness due to the loss of papillae, I'd love to hear them. I'm not B12 deficient which was one of the first things the oral surgeon at the hospital checked when I'd been referred re a swollen submandibular salivary gland, but that's a whole other story.

Thanks in anticipation peeps.

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6 Replies

  • Posted

    https://dermnetnz.org/topics/angular-cheilitis/

    Have you looked at DermNetNZ? I wonder whether you need a change of Specialist or hospital. Are you in the UK?

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    • Posted

      Hi mrsmop,

      I am in the UK & hadn't heard of DermNetNZ but I shall have a peep at that, thank you.

      Haven't considered looking for a different Oral Surgeon though, as this Consultant does seem to know what she's talking about & has certainly not messed about so far. in fact, after examining my larger than normal submandibular salivary gland, she didn't hang about with follow up investigations. Blood tests done on day of examination & ultrasound scan & MRI both done within one month, marked as urgent! As anyone in the UK will tell you, getting appointments for any further investigations here is usually months of waiting lol Results appointment also done within a week of having those scans! Then was told not to expect the sialogram appointment to be very quick as not urgent but had that only 2 weeks later!!!! Good ole NHS lol

      Sadly no suggestions to ease the soreness on my tongue though apart from being told to avoid spicy foods or anything that stings my tongue. And to be honest, I'd already sussed that out for myself lol

      Thank you for taking the time to reply mrsmop.

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    • Posted

      I should have said that in the past, I have used Canesten HC cream, which has helped.

      I have a compromised immune system, so pick up these things periodically.

      I haven't had a sore tongue like you describe.

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  • Posted

    Hello Hippyginger, I know your message was some months ago but I have just seen it and thought I would reply anyway. I have a lot of pain with my lips, mostly along the lines where the lips meet the inner mouth lining but the lips themselves can hurt also including the corners. Fifteen years ago I had a gastroscopy which found a mass of candida at the base of the oesaphagus. Candida is frequently mentioned as causing angular chelitis though I am sure you would have eliminated this as a cause in your case but as a result of this I suck one Fungilin tablet every night at bedtime and candida has not returned either to my mouth in general or the corners or the oesaphagus. I thought I would also mention that I had a big (red) problem around my mouth back in 2012 which eventually I put down to an allergy to beeswax, present in most lip balms, and probably developed from years of using such lip balms. Since then I have used Aquaphore, available online, and have found this really good and very soothing for the external lip dryness. I apply it numerous times a day. I am in Melbourne, Australia so am not sure if Fungilin is available where you live.

    No suggestions for the tongue soreness I'm afraid. I'm in much the same position having had Sjogren's for 50 years.

    Wishing you well, Maureen

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    • Posted

      Thank you so much for replying Maureen & confess that I haven't been on here, or any other forums since this blasted Covid-19 pandemic started here. Having had my best friend's husband die because of Covid in April, & another friend's family member dying from it, it's all been too depressing.

      However, I have at least found that Nivea lipbalm frequently applied especially at bedtime seems to be at least preventing the cracks at the sides of my mouth bleeding providing I do keep reapplying it throughout the day too. Not heard of the Fungulin over here but might be something to research, albeit I don't have any cracks on the rest of my lips, (fingers crossed it stays that way). And one bonus of having to wear face masks in so many situations during this pandemic has the advantage of nobody being able to see my sore, red cracks😷😉 Not that I'm venturing very far or very often as I'm on immunosuppressant drugs so my emergency trip to the dentist this week really worried me inspite of the surgery observing all the Covid guidance, I was relieved to get out of there.

      To focus my mind on doing something useful since lockdown, (23rd March in the UK), I took to making button headbands for over 100 frontline workers to hook their masks over to prevent their ears getting sore. My daughter is a frontline NHS & Social care worker. I'm very proud of her.

      Then I started making 3 layer face masks when it became clear we would all need them. Originally meant to only make them for our family which then spread to extended family, friends, neighbours, family's friends & extended family's family & friends, my neighbours, neighbours families & their friends and our local hospice for the office staff who don't use the medical grade masks😷Just think how rich I could be if I wasn't simply giving them away😂Thoroughly enjoyed making them though between the blooming fatigue & hands being too painful to turn the masks the right way out through a tiny wee hole.

      Have now developed rough, flaking skin on my hands & feet but that's probably for another thread👍

      Thanks again Maureen, I hope you & yours are keeping safe. Take care.

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    • Posted

      Hello Hippyginger,

      It was really good to receive your email this morning when I am feeling really at rock bottom. I live in Melbourne in Australia and we have had a second wave and been on what is called Stage 4 restrictions for weeks. We thought we were coming out of them in a week's time but yesterday found it is going to be a long, slow, tortuous exit. I was not really coping with anything in August already then 2 1/2 weeks ago a 16-year-old, in cohorts with 4 boys (one 14), stole a car 1/2 an hour's drive from where I live, ended up in my small quiet suburban street, backed at speed into my car parked in front of my house, pushed it into the car parked behind and wrote it off - in Stage 4 restrictions where nothing is open! I had a severe illness back in June and between the two things, the illness and the shock/grief/disbelief/anxiety of this, my Sjogren's has taken a very bad turn for the worse. My lips hurt on the inside, something I cannot seem to find spoken of by anyone else. Lip balms/creams stop or relieve the external drying but I do not know how to deal with this internal pain. I suspect it is because the minor salivary glands in the lips have been destroyed so there is no padding to cushion the pressure of pressing lips together in talking, eating ... and not keeping the lips together when one has a dry mouth is not an option. I think this is rare and because I have had Sjogren's for a very, very, very long time. I am glad you have found something to help your lips and how well you have done making all those masks; you must be very talented. Masks are compulsory here also. I wish you well with everything. Those of us with autoimmune disorders suffer endlessly but mostly silently all the time and Covid on top is one step too far.

      Again, thank you for communicating. I live alone and have no family in this state so a 'touch', no matter from how far away, from someone who understands more than most, is so welcome.

      With best wishes, Maureen

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