Face cheeks raw inside with skin thickening

[Eden1234]

I have restricted mouth opening because of systemic sclerosis. Skin thickening quite bad on cheeks of face. Just wondered if anyone else was bothered with the feeling the inside of their cheeks are too big for your mouth and sides of cheeks and tongue are quite raw? My dentist says I must be grinding my teeth which is possible but I just feel my cheeks are closing in in my mouth and being regularly bitten/irritated as no room in mouth. Be Interested to hear from anyone else with same or similar. Thanks in advance.

[Mirv]

Yes me too! Feels as if there is no space in my mouth and the inside is thickened in a line where my teeth come together. I sometimes wake up and I seem to have sucked all the air out of my mouth. I really notice my mouth getting smaller and I have more than my fair share of dental problems and dry mouth. I have had scleroderma for almost 7 years but only on hydroxychloroquine and painkillers. Will be interested to see what other replies there are.

[positivedaybyday]

HI,

Yes I had the same. The first strange thing I noticed was when I tried to bite an apple. I found I was couldn't open my mouth as usual.

It also felt my teeth didn't fit in my mouth anymore, it was a very weird feeling.

I thought I was going mad, what was happening to me?

These were a few of many strange things I noticed before I was diagnosed with Acute Diffuse Cutaneous Systemic Sclerosis in 2017.

As the disease progressed very quickly my face thickened, more on one side than the other. I was on lots of medication at this point & predisolone made my face look moon shaped. My skin score for my whole body was rocketing to a dangerous level.

I was given leaflets at the hospital with specific exercises for the mouth & other areas.

As the disease was in its early stage & hadn't affected my major organs I was lucky to be offered stem cell treatment.

I am now three years on & the skin tightening has reduced significantly. It's not back to normal but I can see the difference.

I suffer from a constant dry mouth & use Saliva Stimulating tablets. When I wake up in the night I pop a tablet in my mouth which slowly dissolves. I can then turn over & fall back to sleep.

Are you under a specialist in the field of Systemic Sclerosis? If not you need to be as each case is different & varies in the degree of complexity & issues.

Write down your problems so you remember all the strange feelings & how often.

Take a friend or partner with you to write things down for you so later you can discuss what was said.

I hope you get some relief & a way forward.

Xxx

[Lorrainej Volunteer]

Hi Eden1234,

It sounds very sore, did your dentist suggest anything to help improve your symptoms?

Microstomia (mouth narrowing) is quite common in Systemic Sclerosis if there is skin thickening unfortunately. It tends to happen slowly over time, so usually isn't noticeable.

I personally find mouth exercises helpful, these were done with my rheumatology physiotherapist, but you are best checking if this might be suitable for you.

Maybe asking for an appointment to see a physiotherapist or an occupational therapist might help improve the inside of your mouth.

sruk.co.uk/scleroderma/scle...

[hawkinse]

hi sorry to hear you are having issues with your mouth .ibv bought a tooth flosser a water machine and this is gentle on my gums .i do a lot of exercises for my mouth and face ...in the morning it does help to relax the facial muscles .lots of moisturiser and dare i sayit lip stick ,cant do with out it .hope this helps