Sore Lips: Can anyone offer a... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Sore Lips

Abbybobtim
Abbybobtim

Can anyone offer a recommended product for sore cracked split lips, would be really gratefully. Thank you

39 Replies

Sympathies. Vaseline is always worth a try,

aquaphor ointment

Thank you unfortunately Vaseline had no luck

Abbybobtim
Abbybobtim in reply to Castella

Thank you unfortunately Vaseline had no luck

Sorry for the wrong reply, have looked up aquaphor and sounds good will keep in mind, have put in my basket.

if your in pain wild lettuce extract ebay, mt rose herbs let me know how it works for you. love julie

Abbybobtim
Abbybobtim in reply to Castella

Thank you Vaseline had no luck

Abbybobtim
Abbybobtim in reply to Castella

Vaseline no luck

Hi, I too get sore, cracked lips (but only in the last 2 years. Not sure if Scleroderma related or due to surgery on my mouth in the last 2 years or even due to nutritional deficiencies). But no matter the reason, I found Lansinoh helps and doesn’t sting. It’s clear like Vaseline.

Not sure if available in UK (I live in Australia) but could get it online. Yes it is mainly used as a nipple cream but does help lips too. It is 100% hypoallergenic high purity, medical grade anhydrous lanolin. So if you read lanolin can cause irritation etc., in some people it is most likely the ‘other normal’ type lanolin (not this type). It is classed as an emollient, which allows the skin to breathe while protecting against moisture loss.

Another ointment which can help is Bepanthen Nappy Rash cream. Yes, another product that is labelled for one thing but helpful for another. Think about it, if it’s safe for baby or mum it should be OK for most of us.

This may relieve your symptoms but knowing the cause of your sore lips will be the best treatment. I’m yet to find out what is causing my tight, sore and sometimes split lips 🤐

Hope you get some helpful answers

Abbybobtim
Abbybobtim in reply to Gmargs

Thank you Gmargs have managed to find this on Amazon so will definitely give it a go, hopefully will work. Thank you

Gmargs
Gmargs in reply to Abbybobtim

I was also reading that some medical practitioners (in the UK too), can get samples of Lansinoh to give to their patients to try. Maybe ask around or look up Lansinoh samples UK. Then you can try before you buy?

Abbybobtim
Abbybobtim in reply to Gmargs

Thanks

I’ve found o’keefes lip balm to be the best and I’ve tried all sorts included the nipple ointments which are good but expensive and can still be a bit drying. Okeefes (orange packaging) doesn’t dry out my lips and stays on the longest without feeling greasy. Hope you find one you like x

Abbybobtim
Abbybobtim in reply to Mlw79

Hi, thank you so much for your reply but I have tried Okeefes and unfortunately no luck with it.

I have found Carmex classic medicated lip balm to be the best! It can be found on Amazon and be sure you get the one in the little jar.

Abbybobtim
Abbybobtim in reply to gavnic120

Hi, another tried and unfortunately another no luck but thank you for replying

I get Oralieve saliva replacement gel due to dry mouth and you can also rub it on your lips to keep them moist and soft. However my lips were just a bit dry and not cracked and painful like yours.

Abbybobtim
Abbybobtim in reply to Poppy221

Thank you Poppy, will keep your product in mind

Hi Abby - going to ask you a very silly and hopefully not too annoying question... how much water do you drink a day? We must drink at least 2 litres of water a day to keep hydrate, especially those with AI - this was a life changer since very young (although these days, even drinking approx 4litres a day apparently, I still have v bad flakey dry skin, sicca and constantly thirsty.. just the way it is). And do you take a high B complex combo with zinc etc general multi vitamin/mineral - something high quality such as Solar? I recommend totally as without these, I'm in a right state. There are tons of articles on the net re vitamin deficiency leading to this concern - and, as so many times I find(!), nutrition isn't mentioned on the NHS page about it. I cannot understand why clinicians don't talk about having a highly nutritious diet can really make a difference and is essential to everyone. Here is the link to one page that might help: healthline.com/health/split...

For years I have used a fabulously expensive (but got it free!) lip balm by Elle McPherson on her Welleco website (as I'm a huge fan and long time user of her powered Greens which I found pre diagnosis when having my second bed bound severe flu about 5years ago and was really struggling to work generally by then..) however I only have a little of the balm left and she's stopped selling it for some reason... probably as no one would believe how long it lasts and how well it works - and just thought it was extremely expensive for the product. Worked (and smelt) so well and lasted 3yrs! Anyway - I use Eucerin products for body and face and they do a "Gold Standard", as they put it, lip balm which you can get in larger Boots or just order on line - eucerin.co.uk/products/dry-... - their other products have really changed my life (no more tight, itchy and red skin, leaving trails of skin flakes on the chairs and cracking heels, face flaking much improved etc) so I can truly recommend.

Have you discussed with your clinicians btw? Take photos and send pre phone consult if that is what you are having right now, or show in person once we are (hopefully!) allowed back inside hospitals. There are a huge array of reasons for cracked lips....

I do hope this helped and you don't mind me blathering on about things you are probably already very much aware of and attending to! All the best to you, D

Oops sorry - that was meant to be Solgar vit/minerals not Solar as the autocorrect got the better of me! dolphinfitness.co.uk/en/sol....

Abbybobtim
Abbybobtim in reply to DJK99

Hi, have found Solgar Kangavites Vitamin/Mineral chewable would they be the right sort of thing

DJK99
DJK99 in reply to Abbybobtim

No I'd just go for the V75 or 2000 - your wee will go bright yellow due to the B bits - but nothing to worry about. Your energy and ability to deal with life will become a lot better too ;)... as helps with stress.... Do let me know how you get on as I know you will feel so much better - take in morning with breakfast but not with coffee or tea as they kill vitamins... might as well chuck them out the window ;). Good luck!

Abbybobtim
Abbybobtim in reply to DJK99

Thank you have found 2000 ordered, will keep in touch

Abbybobtim
Abbybobtim in reply to DJK99

Have found a better one same make but for the over 50's

DJK99
DJK99 in reply to Abbybobtim

I’m over 50 alright! What one is it?

Abbybobtim
Abbybobtim in reply to DJK99

Sorry getting you all confused have ordered the 2000 as you suggested, will keep you updated, :)

DJK99
DJK99 in reply to Abbybobtim

No it’s ok i’d seen the one about you ordering 2000 after that. You won’t look back! Great stuff... You cld also try H&B’s “Busy B with Vit C” plus “Calium/magnesium/zinc” but in the end the 2000 has everything you need and you just take one(?) with yr breakie (and no caffeine for an hour either side) - job done. Yes, it’s all expensive, but so worth it. Your energy should improve along with all sorts... Well, I hope! Do let us know if you remember... oh it should help your cognitive function and mood too ;)..

Abbybobtim
Abbybobtim in reply to DJK99

Thanks, look forward to trying, I don't worry about what things cost, if they work, well worth it :)

Abbybobtim
Abbybobtim in reply to DJK99

Hi there promised to get back to you regarding the vits, unfortunately when I received them I tried them for a few days but struggled too much to swallow them as I suffer with a gullet problem where I have to have tablets that are either very small or coated, most of the food I eat is either pureed or really soft, but thank you so much for trying to help me.

DJK99
DJK99 in reply to Abbybobtim

That’scsuch a shame. If it helps, i have the same problem and break them in half and cover them in honey, place at back of my mouth and drink down quickly with lots of water, imagining opening my throat. Does that sound weird? Obviously there sounds like a risk of choking for you so guessing even doing as I do, it’s far too dangerous. There are dissolvable multi vits and minerals or things such as Floradix - might be worth searching the net. You can buy small, gel vits too - I am so sorry you’ve wasted yr money on this but hopefully you can now search for products that meet your needs. Where there’s a will there’s a way. ;) . All the best, take care, D

Abbybobtim
Abbybobtim in reply to DJK99

Thank you so much for your kind support, as you suggested I am searching for an alternative there are so many so it's a matter of trial and error, luckily a lot of the sites will tell you size and quality of product. and the gel capsules are what most of my tablets are so that is what I am searching for. Hope you had a good Christmas Day, have a Happy New Year let's hope it will soon start improving. Take care stay safe.

DJK99
DJK99 in reply to Abbybobtim

Well... I take Welleco Super Elixir greens which I mix with yoghurt (to get rid of the inevitable lumps in water or juice if you don't!) and then fill the glass with half water half pineapple juice and have done since I went looking for something excellent to help me (pre diagnosis) as was just unable to work properly and having multiple very bad flu, infections etc, about 6years ago now. I've never looked back. It helped hugely very quickly! It's extremely easily absorbable... but not cheap! It's got everything in it but I have to say - after not taking my mega vit b complex and high vitamin c each day for about a year, after a while I realised I still needed to take these as my job was so hugely stressful and intense along with my deteriorating health - and stress kills vitamin B and all sorts . Now I have a ton of stuff each morning and evening to try and help myself be as healthy as possible - these things can only do so much of course, so am on methotrexate and all sorts via my rheumatologist and GP. I've taken excellent quality, high level combination vits/minerals etc all my life as my father got me on them when I was very young indeed as I was covered in rashes, always ill etc and he wasn't into orthodox doctors (too young to swallow pills so he had to squeeze the capsules of runny vit b etc onto jam on bread for me - still revolting for a poor little 5yr old!) and I cannot imagine how I would have managed without! I have a fantastic diet too, which he also brought me up on (I'm now nearly 58!) and keep v very hydrated. Anyway, here is the link to the Super Elixir "subscribe and survive" welleco.co.uk/products/well... which gives money off for having a 3 monthly delivery (still expensive but excellent product I think) or maybe you'd want to trial it with one pouch first. If not your thing, I know Holland & Barrett do lots of chewable vitamins/gummies etc and other less expensive powder type vits/greens. I like Welleco for the taste too - so if you do go down the powders route be aware some of them taste ruddy awful (I've trialled!). I had a quick look for "easy to swallow vitamins" etc and noticed that none of them have anywhere near the level of strength required (in my opinion) such as Solgar but I'm sure even a little addition to your daily intake will make a difference - well, I hope ;)!! I'd give Holland & Barrett or Neal's Yard etc a call to see if they can recommend the best option for you. Yes, hoping things look more hopeful for us all soon... it's definitely tricky ;). Onwards and upwards... D x

Abbybobtim
Abbybobtim in reply to DJK99

Thank you 🥰

I find Calendula cream helps

Thank you another one already tried, no joy

Have you ever tried Blistex? Might be worth a go? boots.com/brands/blistex

Or even this one drpawpaw.com/

Abbybobtim
Abbybobtim in reply to amc282

Hi there, thank you for those, have tried both, paw paw worked for a while then unfortunately it all started up again.

Sorry I know I’m coming late to this post but I have terrible chapped lips - well lower lip. I’m diagnosed with a sun damage condition called solar cheilitis which presents like dry chapped lips - but isn’t. I use some really horrible cream to stop it turning malignant and spreading into my mouth. My dermatologist sought the advice of a top expert dermatologist in oral skin conditions and phoned me the other day. Instructions were that I must get swab for oral thrush done as this occurs a lot in sjogrens. If I have this then I should be prescribed 2 systemic meds for thrush.

For my horrible lip I must not use Vaseline as it makes this condition worse. I must only use a gentle organic balm occasionally ie a few times daily and be sure to drink a lot of water daily and use saliva substitutes a lot and let my lips contact them too. I don’t know if virgin coconut oil or aloe Vera cream might help but my lips aren’t actually dry they are diseased although they look very dry.

So I haven’t found petroleum balms that helpful - but instead now use 2 I bought in a health food farm shop last year called WS.Robson’s Chain Bridge honey balm and Badger certified organic sleep balm. They give much more gentle relief than Vaseline and you could probably find them online.

And just in case your chapped lips are same as mine then here’s a link might help - it can only be diagnosed and treated by a dermatologist and they usually take a tiny biopsy to make sure. maaom.memberclicks.net/inde...

dermnetnz.org/topics/actini...

Abbybobtim
Abbybobtim in reply to 282523

Hi there, thank you so much for your reply I will go to your website and maybe like you I will get some relief

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