Face Changes. What is going on?

[AMDP]

I wonder if somebody could tell me what is going on? I have tightening skin on my face and scalp. My temples and cheeks are getting really skinny. Prof D said something about fat cells no longer producing fat but I'm a little confused by this. Can anybody explain the process for me please?

[tall-tim]

My sympathies to you. In Scleroderma the connective tissue in the body begins to shrink. Not sure about the fat cells, but that seems reasonable. For me, it felt as though I was beginning to wear a tightening mask over my face. By the end of the process I didn't like what I saw in the mirror.

[AMDP in reply to tall-tim]

Hi, yes shrinking makes sense and that is exactly how it feels. I agree it is not an attractive disease, but there is nothing we can do but be philosophical and try to look in the bright side. Less wrinkles!!

[living-the-dream-ssc-ray]

Hiya ! I use baby oil morning and night to try and loosen the tightening on my face. as well as an spf moisturiser if I go out. I have tried all sorts of different creams and this so far is my best solution ! have you found any products in particular which help you ?

As for the mirror - as little time as possible is spent looking ! although I do try and follow Rumi, Louise Hay and Wayne Dyer's advice that you should look in the mirror and say 'I love you' x

[Hidden]

I am interested to know which category of scleroderma you have please? I am noticing my face is thinner.and have trouble keeping weight generally. mine is Systemic Sclerosis.

[AMDP in reply to Hidden]

Hi I suspect mine is SS too but Prof D is reluctant to diagnose it I think. Having said that he did say that my face changes are indicative of late stage scleroderma. Does this mean we can eat as much as we like? Lol x

[Hidden in reply to AMDP]

What a pain this illness is eh? I already do eat as much as I want. But as my digestive system is slow to move it I feel full too soon. I hate my gaunt face. Strange Professor Denton said you are in the late stages of Scleroderma yet is unsure of the category.

[AMDP in reply to Hidden]

I know that's what I thought too. Guess I'm still in the early stages everywhere else!! or maybe not. My jaw aches, one of my hands won't work and the rest of me is dodgy too. Yep, what a pain it is.

[Hidden in reply to AMDP]

Although we would not wish our prroblems on anybody, it is somehow a comfort to know we share the same weird symptoms with.eachother. I have had the jaw ache once so far. I got over my stiff and painful left thumb and swollen knee last week and go to bed tonight unable to walk properly due to one of my toes too painful to bear my skinny self. Just telling you so you know you have some company ! Best wishes to you and all.

[AMDP in reply to Hidden]

Thanks for sharing. It's good to know we are not alone. :-). Do you get breathless?

[Hidden in reply to AMDP]

Yes. oddly some times more so than at others. . Lung function test in 2012 was an improvement on the test in 2011. One due in July this year. I have given up trying to understand the vast array of bizarre symptoms that present themselves with this illness. But realise there could be a danger in doing so because of overlooking a symptom that may be totally unrelated to Sclero'. Complacency has set in I'm afraid.

[Irene55]

I find Doublebase Gel is very good for keeping my skin soft and moisturised. I first got a free sample at the Royal Free Hospital. Professor Denton's specialist nurse put out a selection of samples which they had received from pharmaceutical companies. I am glad I picked some up. Now I get the gel on prescription, though I have seen it on Amazon for around £10.

[AMDP in reply to Irene55]

Many thanks I will try it. All the best,

[mad4cavs in reply to Irene55]

I use double base and find it great

[wartsandall]

Hi AMDP...............I always moisturize my face and neck morning and night......I also apply body butter after showering and having a bath...........get yourself into the routine of doing the same and you will notice some improvement.....

[Maggs3petts]

I have that too. I find it happens mostly at night when I'm in bed and about to drop off to sleep. Its exactly like wearing a face mask. I can feel the skin getting tighter and tighter. On the lighter side by sister-in-law said, "Don't knock it, its a free face lift." I know its not funny when it happens.

[GGhere]

The skin on my feet and lower legs is really tight and very uncomfortable when I'm in bed. I feel like there is string tied tightly round my ankles - the sensation disappears once I'm up and dressed and put on knee high support things - which I hate, frumpy old things so I hide them with pretty leggings. My face is tightening just like you all describe so I cheer myself up by pretending that I'm growing a free facelift - it feels like we've all drawn the short straw having ended up with this horrible disease. Hey ho everyone, we'll not let it get us down (I was going to send you a smiley face but I can't see where you get them from)

[GGhere]

Hello AMDP, I've just replied to your kidney query. I know just what you mean about the face thing. I too have the tight skin on temples etc. In fact tomorrow I have a hospital appointment to see a dermatologist as I've developed strange round circles on my face that have grown quickly so I have to have those checked. But back to the face changing shape thing. I keep telling everyone that my nose has changed. I can tell when I blow my nose because it feels much shorter and narrower. Of course, people think I'm bonkers - but I swear it's not my own familiar nose that's stuck on my face, it feels so wrong. I read in a leaflet about scleroderma that noses are often affected for some patients and there is a condition called pinch-nose - I'll swear that's what happened to mine. My only regret is that despite the tightening skin and shrinking nose my old age wrinkles go away - I thought maybe with the tight skin I'd be getting a free facelift - no such luck. Best wishes to you.