Persistently sore "shredded", peeling lips?

[HipHopanonymous]

I have no idea what's going on with my lips. I have quite dry skin generally and I've always had to be diligent about applying lip balm, but a few years ago I discovered that you can buy Lucas Paw Paw ointment in a lip balm, and never ever had a problem with dry lips again.

Until now! It started about 3 months ago - the outer edge of my bottom lip felt shredded and sore, and the peeling skin looked sort of whitish. I put it down to a new face wash I'd started using which had salycilic acid, stopped using it. The soreness and peeling persisted, then when I was using a travel toothpaste while away, the inside of my lips started peeling too (I have reacted to an ingredient in sensitive toothpastes before). Stopped using that.

Still they split and peel. I'm using fluoride and sulphate free toothpaste, a Simple unfragranced face wash, Aveeno sensitive face cream. I've tried applying an eye cream to the sore area with vaseline over the top. I've tried numerous lip balms and half of them make it worse. If I eat anything remotely salty they burn like a bastard, and even swell for a little while.

I can't face going to the GP with something as lame as "sore lips", has anyone any experience of something similar? What was it and what fixed it!?

Hmm I did wonder that, as my brother only just found out and he's 53. Apparently it commonly runs in families?

I've had some very weird and wonderful bowel symptoms in the last year or so but had a clean colonoscopy in 2022, so I put it down to the "IBS" that has bothered me on and off since my teens. Might be worth another test.

I'm always a bit shy about going to the GP, partly because I feel like I'm and out of there all the time about HRT and blood pressure, I don't want to be THAT patient who spends too much time googling and rushing to make an appt. But also partly because they are under so much pressure and have so little time that I don't want to present them with a wall of symptoms.

Eight hour balm is good (in the tube, not the pot), but also try Okeefe’s in the orange tube. I had similar for nearly a year, loads of teste etc but that sorted it in a few weeks like magic and I’m never without it now.

@HipHopanonymous definitely worth another test. A colonoscopy won't show CD as it is only present in the first part of your bowel past your stomach (the duodenum). It does ruin in families. I was diagnosed as a toddler after an operation. No one else in my family has been diagnosed. My DH's was diagnosed age 90! Again no one else on that side diagnosed! It takes some sort of stress on the body to trigger the Coeliac gene to activate and cause symptoms.
Don't feel bad about going to your GP, that's what they're there for. Equally don't be fobbed off as a lot of GPs don't get training on CD. Make sure you eat gluten twice a day for at least 6 weeks before any CD test to be sure of a true result.

Sounds like when I had thrush in my mouth.

Yes I bought that (O'Keeffe's) a few weeks ago, doesn't seems to have helped unfortunately. That's why I wondered if it's a sensitivity to an ingredient in something I'm using somewhere, as my efforts to use balms for dry chapped lips haven't helped one bit. 😕

I’d not worry about being a bother and go see your GP. You’ve tried just about everything you can that might normally control or stop it. It’s sore and it sounds miserable and needs looking into. Could be allergy, autoimmune thing, hormone imbalance or vitamin deficiency. You need some tests doing. I hope you get to the bottom of it .

Aw thank you. Yes I suppose if I'm quick and concise and stick to the symptoms and everything I've tried, without listing my perception of possible causes, I can't be too much of a burden can I 😂

You are absolutely not being a burden. Just get yourself seen. I went about recurrent mouth ulcers and my GP took it very seriously and arranged a colonoscopy and then referred me to an Oral Surgeon consultant. They ruled out serious causes and then treated the ulcers. I still get crop after crop but the treatment reduces the pain and length of them so it’s totally manageable. Before I could barely talk, eat or brush my teeth for about 10 days till they calmed down. Then I’d get a few weeks break and the next lot started. It wasn’t life threatening but it was very miserable indeed and a job for the professionals. As is yours. Good luck.

If the toothpaste has sodium lauryl sulphate in it, it can cause this. My mouth was raw. Most toothpastes contain this. You’ll have to check ingredients.

I get very dry mouth and lips. I find Vaseline Lip Therapy Aloe Vera helps, its the green tube

Use bepanthen! I know it's baby bum cream but it's also the worlds best lip balm!

I had bad IBS style issues before my thyroid was sorted too. Might be worth getting more bloods done and investigate the coeliac thing especially if your brother has recently been diagnosed.

Came to say the same. Suddenly developed an allergy to lip balms and struggle with most lipsticks now. So frustrating, the only thing I put on my lips now is vaseline and a serum thing which looks like a lip gloss but use that sparingly. Lip oils are also usually OK.

Sorry to hear that. It is miserable so agree don’t be worried to go to the GP. Hope it gets sorted soon.

I have been using the same toothpaste for a couple of years but last time I bought it, I noticed it had been rebranded/repackaged. It made my lips burn the first time I used it but I didn't put the two together in my mind. The next day, it made my lips burn really painfully and they swelled up enough that DH asked if I was okay.

It has happened with two other toothpastes I have tried and I have narrowed the culprit down to sodium hexametaphosphate. It wasn't on the ingredient list of my old favourite toothpaste but it seems to be in loads now, and google tells me it can be extremely irritating to skin.

Norwegian formula might be worth trying as it's bland but nourishing
I notice you also have dry eyes and as there is Crohns in your family, it may be worth asking your GP if Sjogrens is a possibility. That is also an auto immune condition.

What sort of toothpaste, if any (!) do you use?

Brands found in health food shops - Jason, Green People, Weleda. I've recently started to use more mainstream brands again that have foaming agents but if so, I need to apply lansinoh as otherwise my lips start to dry up again.

The toothpaste that I’ve got on best with is Biotene . It’s for dry mouth conditions but doesn’t have SLS. I used to get a layer of skin peeling off my lips and I stopped using lip balms, lipsticks etc. only when I changed to a toothpaste without SLS did it stop. I still get constant mouth ulcers which no one has found a cause for but definitely try toothpaste with as few a chemicals as possible.

This is the one I have. I get it in boots or off eBay or Amazon

Ok so I have a combination of symptoms:

Sore, peeling lips which started suddenly 10-12 weeks ago, and don't improve despite stopping most obvious irritants and trying to diligently moisturise

Vague IBS symptoms which wax and wane between hard stool/mucus, and loose crampy stool (apols for TMI)

Joint pain (feet and ankles, hips, wrists, hands and elbows), hypermobility

Sporadic swollen glands in neck

Painful skin (bruised sensation when touched)

Frequent ulcers on tongue and inside cheeks, occasional sore/tickly throat. Hard bumps pop up on gums after some foods, and go down within a few hours - had a pea-sized blood blister appear inside my cheek a few weeks ago which hurt like a bitch

Dry eyes and mouth

Recent coeliac diagnosis in immediate family.

If I take that list to my GP surely they're just going to want to curl up and die? I have posted something similar before - when the physio said I had unusual hypermobility and global pain, he suggested I push for a referral to a rheumatologist so I posted for advice on how to approach the GP with such broad symptoms. An actual GP commented and said she would inwardly groan if I presented with that.

So what do you do then? I have insurance which includes a GP service, but I'm unsure of exactly how that works in terms of a referral.

You definitely need to see the GP. I’m not a medic but they should test for IBD, coeliac, thyroid, sjogrens, arthritis , vitamin deficiencies etc. That way will hopefully give a better idea which specialist/s are going to be most helpful.

If you have private cover I’d go for that, on the basis it took 18 months for my NHS referral for an oral surgeon appointment for the ulcers. The wait for a colonoscopy beforehand to rule out IBD, was much shorter. But if there’s multiple tests/ investigations likely, the shorter periods between appointments and then results and then follow up appointments etc, the better.

Some conditions arent, quick, straight forward or simple easy to try get to the bottom of, but you do need to show this list to someone and not worry that you are taking up time or they’ll be in despair . If you go NHS ask if they do double appointments.

Yes, do pursue this. The symptoms you mentioned could all be connected and may all point to a systemic auto immune disease.. joint pain for example could be part of Lupus
You deserve investigation as much as anyone and would not be wasting anyone's time
If it was me, I would give the most troublesome symptoms mention recent familial crohns diagnosis then move onto your other symptoms
Write them all down as you have in your post.
The number of symptoms you have are likely connected
Lots of experience of auto immune disorders in wider family here