Microstomia

[Dynamiteeee21]

Hi,

I am new to this forum so I am hoping to glean lots of tips & help from my fellow Ssc sufferers! On that note I would like to ask if there are any sufferers of microstomia who deal with not only the tightness around the mouth but also red itchy lumpy spotty patches as well! It is driving me insane & although It is a couple of years now that I have been experiencing the slow onset of tightness in the past couple of weeks it has accelerated really quickly & is so noticeable now but the red patches actually make it look far worse & draws attention to my mouth which as any of you fellow sufferers know is the last thing u need because it can really dent your confidence. I look forward to any replies👍🏻😊

[LucyJean]

Hello there, sorry to hear how difficult things have been for you more recently. Can I ask who you see for treatment of your scleroderma...do you see a Rheumatologist who specialises in scleroderma...and/or a dermatologist to address some of the more specific skin changes and rashes? I really think you need to see the latter if you are no currently doing so. In addition you might need to discuss the situation with the oral and maxilla facial department who may help with maintaining your mouth and ensuring that your dental hygiene is as good as it can be.

There is no easy answer to the microstomia. Moisturising the skin intensively and regularly. Doing daily gentle mouth stretches. Sometimes mouth guards/braces might be needed.

Re the rash I think this really needs a dermatologist to address as it is a separate issue that hopefully can be calmed and managed.

All my best

Lucy xxx

[bluesgirl in reply to LucyJean]

That’s good advice from Lucy with regard to your rash, a dermatologist may be able to identify it’s cause. It doesn’t appear to look like telancestasia which is common with Scleroderma but l am no specialist. Initially l had my telancestacia spots lasered to great effect but there were so many of them l stopped doing it and they really don’t bother me that much. With regards to microstomia some people have injectables and l tried this many years ago, not collagen but something similar. I found the procedure very painful, the effect only lasted a few months and the lines seem to come back even more so afterwards but maybe l imagined this. Alternatively you could try mucosal enhancement whereby fat/stem cells are taken from another part of your body and injected into the mouth area by a plastic surgeon. Again this only lasts a few months for some maybe longer. Having the ‘sclero look’ isn’t pleasant and can be quite upsetting especially when you see photos of how you looked before Scleroderma. Not everyone with scleroderma has skin tightening to the face. Mine has been a slow progression but most Rheumy doctors or doctors in the know can spot l have sclero at twenty paces and l can do the same. Yes it’s a rotten disease and doctors should be more sympathetic to how the disfiguation and that’s exactly what it is effects people psychologically.,