Scleroderma & Raynaud's UK (SRUK)
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Diasppearing lips?

For ages now if I open my mouth too wide then the corners of my mouth crack and split and it really hurts, takes forever to heal. Also the corners of my lips have just literally disappeared. I have always had full lips, but now only in the middle, they have disappeared top and bottom but mostly top.

I am worried if I mention it to the rheumy he will think I am mad, as it seems stupid. I can't prove the symptom, what do I do? I know this sounds ridiculous.

14 Replies

ah dizzy - i have had scleroderma and raynauds for the last 16 years and during the last 10 years or so my lips have become thinner and have lines around them a 90 year old would be proud of ! I am 40 next month ! This is one of the symptoms of scleroderma.

I have found, through trial and error, over the years, that keeping them well moisturised (I always have a nivea lip care stick handy) as well as baby oil on my face and mouth at night has brought some movement back into the skin on my face and the lines around my lips are not as prominent either so happy days !

Have you checked out the raynauds and scleroderma's website on ? there is some great information on there as well as there are some patient information leaflets which you can order or download, to take into your next medical appointment. and you being the helpful patient that you are, are just wanting to raise awareness and keep the medics up to date with the most recent information ;)

Have you found any treatments / creams which work for you ? skwiglee who posts on this site, recommends hot stone treatment, so I am going to give this a try in a few weeks following her recommendation !

I also used to have big full lips, I now try and look at the ones that I have left (hardly any top lip, so lipstick looks silly!) and send them love ! haha living the dream :) x


Thanks, I always have a chap stick handy as my lips are so dry. I have to use one with an spf as I blister if not moisturised or go in the sun due to SLE.

So my rheumy won't think I am mad if I mention this? I have had such weird symptoms.

I did order the paw paw cream you recommended and found it to be good, didn't realise just how badly dry my hands and especially my fingertips were.

I don't really understand the different types of scleroderma, I only have a positive ANA no antibodies except lupus ones.



I used to have a really full bottom lip, in fact I used to think that it was too full. Apart from Scleroderma, the plumpness of lips does decrease with age. Hence, so many 'trout pouts' around!

As living the dream says, I am a great exponent of hot stone massage. My mouth was so tight that I even had trouble with grapes and cherry tomatoes. The beauty of hot stone massage is that it is a pleasant experience, the heat helps to breakdown the fascia and it's PERMANENT. So I can eat anything now :D

What I would recommend is find a holistic therapist, someone who understands the body. You should be able to determine their competence if you ask them how it works. One other thing, I call it my '£25 smile' as that's how much it cost. If you have any queries, I'll give you the number for my therapist.

I am now having weekly sessions on my hands, as they are opening and softening.



Its great that you have found something to work that helps you. I like the idea of a hot stone massage. Would it work on the joints and straighten them?


Sounds an interesting treatment. Can you say how the hot stone massage was applied to your face? How long did it take? Where did you hear about this treatment for the face?


I'm very lucky in the fact that I know so many excellent therapists including Louise. When I first met her I was complaining that I looked like I had had a stroke. As my face was so tight that it pulled my right lower lid down. She took a pebble sized stone and gently rubbed it under my eye a couple of times. Job done!

I made an appointment for my face, which took about an hour. The best way I can describe it, is that she used the stones like you would a rubber. It's a lovely feeling, the heat helps to soften the fascia and it is pretty much instantaneous. Louise is so talented that clients come form outside the UK to see her. That's why I say that you need to choose your therapist wisely, as you aren't looking for a beauty treatment.


Yeah! My arms are practically straight now. They used to be permanently bent at the elbow. Also my legs are straight, so I am no longer bent double. And as I said, we are now working on the individual joints of my hands.


Hi Skwiglee

I suffer from bent arms at the elbow :-( they take it in turns!! For 3 days my right arm is bent and locked at elbow then as it straightens out my left arm will start to bend in they are like this every day I might get 2 days in the week where both of them are straight and on those days im able to get my housework done...please can u give me any advice on this.. I've often thought about going to physio I cant understand how they become locked ,is it the tendants swelling or muscle ? No one has ever given me any form of help or advice as to what to do I would love to have straight arms its been 2 yrs...


Sorry guys...not an answer but a question. IS dry skin on hands a symptom of Raynauds etc? I have just come back from 10 days on Tenerife....using fairly high factor screen... but as soon as I got home the skin ..mostly on the backs around the knuckles of both hands, but also between some of the fingers and my right thumb pad... 'has peeled'... It isn't sunburn, I haven't peeled on more generally sensitive areas. I have been back over a week and have had some stressful situations but my skin hasn't settled despite loads of Savlon etc. Any ideas if I should get tested again..and what may the meds be looking for? Thanks


Bee, dry skin on my hands --- dlus splitting, bleeding, peeling with NO discoloration as those with Raynauds speak of --- has been the worst impact so far of my Sjogrens/Scleredarma. After trying steroid creams, coconut and other oils, gloves and anything suggested in these forums, I've finally discovered what works, very dramatically, for me. It's Urea Cream 50%. In the States it requires a prescript. You might want to google "Urea Cream" and consider it for your hands. It's the only thing that helped me.


Hi Bee, do you get other symptoms like colour change in fingers, or pain. I wouldn't hv thought that dry peeling hands/fingers would be the start of raynauds, it deffo wasn't for me. Mine started with colour change and not necessarily with the cold change either, just used to come on in bouts. Thought it was something to do with my heart as friends kept noticing and nagging me to go to my gp. Gp diagnosed raynauds. That was 11 yrs bk now and I also hv limited sclerederma. If you do hv raynauds please take the treatment of nipedine if offered as it as helped with my attack loads. And dizzy I hv not noticed my lips becoming thinner but my mouth as got smaller over the yrs causing difficulty when at dentist.


I had the problem with my mouth getting smaller but I discovered exercises for the face and mouth. Also, Professor Denton's specialist nurse gave me a leaflet with exercises for the face. These are very good and my lips look fuller than they have for years and my mouth seems to be back to its normal size. I used to get a lot of jaw pain and couldn't even eat a banana without nibbling on the side unless I cut it up small. I felt like a beaver when I was eating.

Here are some exercises. This link is from the Scleroderma Society. They have leaflets you can download and print out.

I hope this is helpful. They were very helpful for me. I notice a stiffness in my jaw if I do not do them for a day or two. They are very easy and I usually only do them once in a day. But when I am at the computer I sometimes sit there stretching my mouth. No one can see and I feel it helps. The leaflet from the Royal Free Hospital has more exercises. Maybe they will send you one if you ask.


What you are experiencing is simply called small mouth,it comes right along with scleroderma. It makes it very difficult for a dentist to do his work so it is very important to get dental check ups every 6 months,I learned the hard way. OUCH!


JessieAla...thank you for the suggestion of Urea Cream..will certainly look it up and suggest to my GP. I'm in UK and get my scripts free.

mrsquerty11...I have had Raynauds for many years...have tried Niphedaprine(?sp) but it didnt help, have been on valsartan no help with symptoms there either. GP suggested an op to release nerves...uggh...have had 'frostbite' on one big toe in very cold winter a couple of years ago. Now wear socks & gloves most of the year....I'm old so I can get away with it, people look at me as though I'm an eccentric! Saw a consultant rheumy at Treliske Cornwall UK who laughed when I told him I rarely experienced an attack, except when I'm stressed, if the temp was above 20 deg C !!! I also have ME/CFS...have had half my Thyroid removed recently because of a lump. I'm connecting all the dots but medics don't seem to be!!! Also have problems when dentist says open wide.... it doesn't happen! Thank you both for answering me.Bee


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