Help… burning lips!: HELP… had SS for... - The Australian Sj...

The Australian Sjögren's Syndrome Association

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Help… burning lips!

MawMawM profile image
11 Replies

HELP… had SS for 20 year mostly affects my eyes… but post covid… OMG… my lips feel like they are on fire… nothing helps… 🥲🥲🥲 best things to try???

11 Replies
Tangerine25 profile image
Tangerine25

Hi MawMawM,

I am really sorry your lips are burning, that sounds very painful. Do you think it could be related to nerve pain? Neuropathy can cause burning sensations. If it is the case using medication like Gabapentin could help.

Wishing you all the best 💕

Aline xxxx

Tassa profile image
Tassa in reply to Tangerine25

I have had S.S. for many years and one of the symptoms is a burning dry mouth and lips ,very painful. I discovered that it was the result of lack of vitamin B. I cured it by taking a course of the vitamin B complex. I do occasionally get a repeat of this problem but the vitamin B complex soon stops it. It is also crucial that you keep your lips moist at all times, do not let them dry out as that causes the skin to peel off and dry them out which is also painful. I keep mine moist at all times even through the night by coating them in vaseline or a lip moisturizer.Traveller.

Tangerine25 profile image
Tangerine25 in reply to Tassa

Thank you so much Tassa,

Yes I try my best to keep my lips moist as much as possible. I haven’t been officially diagnosed although it has been brought up by my ophthalmologist, and so many symptoms for several years. I will be having a CT scan of salivary glands in a few months.

That’s interesting you mention how B-complex helps you, me too. I think it could be in part to vitamin B12 and B6 which are very important for nerve health. I am familiar with nerve pain as I have a perineural cyst in lower back (literally a cyst embedded in a nerve), and it flares from time to time which causes lots of pains. I read it’s not uncommon to develop small fiber neuropathy with Sjogren’s, as a part of the deal unfortunately.

Tassa profile image
Tassa in reply to Tangerine25

Vitamin B is commonly known to be lacking in S.S. and Lupus sufferers. It would be a good idea to look at that as being the cause of your dry and burning lips. traveller.

Tangerine25 profile image
Tangerine25 in reply to Tassa

I had my b12 level tested a few months ago and seemed fine but I will ask my GP. Thank you for your recommendation 🤗💕.

ROXY6767 profile image
ROXY6767

Avoid toothpaste, find one that doesn't contain the foaming ingredient that tends to strip the lips of moisture. Also avoid over the counter makeup products, as they contain a lot of ingredients that can make our lip problems worse. These include lanolin, mineral oil, petroleum, coconut oil. I like lip masks/butters. One good one is by Burts Bees - Lavender and Honey Lip Butter. I found it at CVS, Swanson online also has it. I also have one by Laneige from Amazon.

LANEIGE Lip Sleeping Mask - Berry amazon.com/dp/B07XXPHQZK/re...

harmony2 profile image
harmony2 in reply to ROXY6767

ROXY6767 & Tangerine25 I agree with advice to avoid foamy common toothpaste and avoid cosmetics other than mild lip balm (I use Nivea in dark blue cylinder; I have one in every coat pocket, my handbag, and one in every room at home, which includes one under my pillow! :).

IMPORTANT: Instead we Must use high flouride prescription strength toothpaste (which is low foaming) to extend the life of our at-risk teeth. This is necessary due to high incidence of caries in Sjögren’s syndrome, due to low saliva. N. B.: saliva helps prevent cavities but our saliva level AND QUALITY/COMPOSITION is inadequate). PLEASE talk to your dentist or get one ASAP. Also, I recommend:

-get more frequent cleaning of teeth.

-Take pilocarpine.

-Use Biotene or similar dry mouth oral rinse. I use a few drops especially at night each time I awaken.

-chew sugarless, xylitol gum when mouth is bothersome.

The theory about nerve pain is very possible too. Possibly ask for neurological tests to assess.

MawMawM

Tangerine25 profile image
Tangerine25 in reply to harmony2

Thank you harmony2, those are wonderful advices! I tried in the past to use a xylitol-based toothpaste without fluoride and it was a really poor judgment on my part: I developed so many more cavities. The reason I had switched toothpaste is because I realized sensodyne irritated my throat causing it to be constantly red and burning due to SLS component.

I live in Canada so maybe we don’t have exactly access to same products but I do use Pilocarpine eye drops orally as prescribed by my rheumatologist, as well as:

Ocunox oil ointment at night as I have meibomian gland dysfunction.

Salivea toothpaste and mouthwash (has fluoride, salivary enzymes, and xylitol). It’s basically the original Biotene recipe but with the salivary enzymes.

BioXtra mouth gel at night that contains salivary enzymes (made in Canada).

Xylimelt mint-free lozenges (mint too irritating) for night time.

Rhinaris nozoil (medical grade sesame oil) for nasal cavities, I can’t use saline sprays anymore as it burns nose and throat.

Burt bees chapstick continuously throughout day and night (contains vitamin e).

Bausch&Lomb dry eyes preservative-free eye drops throughout the day or Hylo from Candor Vision but more expensive.

Cerave paraben-free moisturizing cream for face and neck and body, it’s not perfect and have to reapply but also add some grape seed oil or rose hip oil for face.

I hope it can help, and I hope the burning lips won’t be a symptom of nerve problem for MawMawM .

harmony2 profile image
harmony2 in reply to Tangerine25

@tangerine25 that’s a good list. I’m especially pleased about the original Biotene with enzymes, Salivea. 👏🏽👏🏽 It was better but I thought it went away since I could not find it for years!

Also will try “Cerave paraben-free moisturizing cream for face and neck and body”. Need suggestions for these. I’m going to keep your list in my notes. Looks like you have gone through much trial and error to get to these! Thank you for your lengthy reply❣️ 😊

harmony2 profile image
harmony2 in reply to Tangerine25

@Tangerine25 P.S. Questions: how does the “grape seed oil or rose hip oil for face” work to not feel you are oily or getting marks on say sheets at night? (Related to Raynaud’s, my face—esp nose, is so cold that I often have pillows and duvet around my face almost like a tent!). Can you get it fragrance-free? I cannot cope with perfumes, which are migraine triggers!

SusieW2 profile image
SusieW2

I'm pretty much in the same boat except have had the burning lips longer. It's distracting and annoying. I've found an unusual treatment but it works for me, Natrum Phos. It's a homeopathic remedy and actually sodium phosphate. When the tingling starts I pop 4 tabs and it calms down within a half hour. An acupuncturist recommended it years ago.I have also found that the burning is related to what I eat. Citrus really sets it off. So I limit my acidic foods and I can control the burning pretty well. My lips still peel as if they were chapped.

I hope this helps you figure out how to manage your lips.

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