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Tight face

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#1 amberjolie


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Posted 12 December 2010 - 01:25 PM


I was on this forum a couple of years ago because they thought I had CREST (ANA was 1:640 and nucleolar, and I had digital ulcers, and some trouble swallowing). Then later, a lip biopsy was positive for Sjogren's, and my digital ulcers went away (never got them back; I do get splits in my fingers, but that's it), and I had another ANA test that was 1:80 and speckled, so the rheumatologist said he was going to go with Primary Sjogren's as a diagnosis, but that CREST was still a possibility, but we wouldn't know except over time.

But lately I've realized that my eyes seem to be somewhat tight; I can feel it if I open them wide, and try to look around. I originally thought they were just dry, but looking at them in the mirror, I'm thinking the skin looks tightish. And inside my mouth there's a spot that seems like it's gone a bit tight, which isn't on the other side. And if I open my mouth wide, it gets tight at a spot slightly in from my lips.

My fingers don't have any shininess to them.

Is this how anyone's skin started tightening at all? Just trying to see if I'm just imagining things, or if it's something that could still be indicating CREST.

Thanks in advance for your answers.

#2 Joelf


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Posted 12 December 2010 - 08:26 PM

Hi Amberjolie.

Sorry to hear that you've had some worrying symptoms.

We do have useful information on skin tightening and CREST which I hope you will find helpful.

As I haven't actually any medical training I can't advise you as to whether the skin tightening on your face is related to Limited Scleroderma (CREST) and in my own case I have very little skin involvement (thankfully!); only the very tips of my fingers which are shiny. I'm sure some of the other members with more specific skin involvement than I, will be posting helpful information as well. I would therefore suggest that you make an appointment to see your rheumatologist to discuss your symptoms if only for reassurance and to set your mind at rest.

Do please post again and let us know how you get on. :)
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#3 Amanda Thorpe

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Posted 13 December 2010 - 06:04 AM

Hello Amberjolie

I think practically everybody's skin tightening starts differently, I have diffuse so was covered in tight skin over a 6 month period which started on my shin. I think if you get anymore tight spots you need to speak to your doctor.

Take care and keep posting.
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#4 Lynnie


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Posted 14 December 2010 - 12:18 PM

Hi Amberjolie

I saw your post and strangely I've just experienced a very similar event!

I have CREST/limited scleroderma, I got a virus about 2 months ago that lead to pneumonia. I had been on immune-suppression therapy for 6 months and other medications and I too started to feel my whole face, head and mouth tighten. Even inside my mouth was very sore and my tongue felt twice its size and raw. My eye-lids stated to tighten and flake about a week ago.

My doctor prescribed the usual antibiotics and anti-fungal drugs for my mouth then my hair began to fall out and get thin. I got very worried and frightened as it was a very surreal feeling I can tell you.

Please do not ignore this symptom, see your rheumatologist and get some medical advice, it could well be a sign that all is not well.

Please keep us posted how you get on and hope you feel better very soon.

hugs and warmth
Lynn x

#5 Shelley Ensz

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Posted 15 December 2010 - 02:46 AM

Hi Amberjolie,

I'm with Amanda in that I think the skin tightening tends to be a bit different for many people. For a classic case they say that our fingers are supposed to swell up first, about the same on each hand. Any skin tightening is supposed to progress on both sides evenly, from the tips of the fingers, up each hand.

In reality, that's a huge oversimplification because the skin tightening can actually begin anywhere (especially in people with diffuse systemic sclerosis). Amanda's started on her shin; mine started on my knees. When I get skin tightening, it typically starts a bit faster and firms up a bit more on one side versus the other so for example one knee bothered me a lot more than the other, the first few weeks of skin tightening.

Both of my forearms started thickening at the same time, in matching areas and with itchiness, but only one side thickened to the point of indenting in an area, and then that round of skin involvement stopped. (I also have some overlapping lipodystrophy, so there's no telling whether the indented area is due to scleroderma or to lipodystrophy; and lipodystrophy is sometimes the last skin stage of certain illnesses, including scleroderma.)

However, "symmetrical" skin tightening means that it is all supposed to match one side to the other, at the same time. In reality, there might be a bit of a time lag for one side versus the other, or a slight difference in hardness or tightening from one to the other. But, the basic idea is that systemic scleroderma occurs both-sided and near the same time.

I'm not sure about the eyes. If I open my eyes wide and look around, they feel a bit tight, too. I don't think my eyes are affected, so I don't think this is scleroderma and there might be more prominent things than that to tell if it is skin hardening involved. Perhaps some other people without face involvement at all can try it and let us know what they think? For the record though, it is possible,for the eye area to be affected by skin tightening. In very rare and extreme cases the surrounding tissue can tighten even to the point where the eyes cannot be closed. So we can live with anything less than that, right?

My mouth got smaller so gradually that I didn't notice it. It was my dentist who noticed it, from lots of dental problems and then needing to use child size appliances. She compared x-rays and said I had a class textbook scleroderma mouth. Looking back in family photos, I can see a big difference in my mouth size over the years. But on a day to day basis, it was so gradual I couldn't (or didn't) notice it myself.
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#6 amberjolie


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Posted 15 December 2010 - 03:11 AM

Thanks for all the replies!

Yesterday my eyes didn't seem as tight-feeling, so maybe it is just dryness. I do have Sjogren's, after all, so there's a distinct possibility it's all that. I will definitely keep an eye out for any other tightening, though. My hands are definitely in a swelling/arthralgia state (but no RA antibodies), but I think that can happen with just Sjogren's too.

I think the main reason I'm sensitive to anything that may be CREST is because 3 of my 4 blood tests over the past couple of years had positive ANA with a nucleolar pattern. And that seems to be involved mainly with CREST and scleroderma. Anybody know if nucleolar can crop up with other AI conditions?

Oh, and to respond to Lynn,

After reading your post, I don't have anything going on nearly as pronounced as you do. All I have is a very slight feeling of what I think is tightness, but I could be just going hypochondriac on myself; I'm not even sure if I'm just being silly and opening my mouth farther than it would normally go anyways, and therefore imagining something that isn't there. I will definitely monitor it over time, though, and see if it seems to be getting worse.

#7 barefut


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Posted 16 December 2010 - 04:26 AM

Hi Amberjolie,

I never even noticed my face tightening in the beginning until I had something in my eye one day and I could not pull my lower eyelid down like I used to. I noticed "smoker's lips" first with my mouth. I have one deep wrinkle on my uper lip. The other sign I had was when I could not open my mouth wide enough for the dentist - and it was very fatiguing to keep my mouth open at all for him.

But before all of this I experienced the sensation of cobwebs on my face. It drove me nuts! I was always reaching to pull imaginary webs off of my face. Bet I looked pretty funny.

Anyway, these were the first signs and symptoms of my facial skin tightening. I thought it might be helpful for you to know.

Take good care,

#8 Sheryl


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Posted 16 December 2010 - 06:01 AM

Ah Barefut, how soon we forget some of our first signs that something wasn't right. I had the cob webs thing going on. Drove me nuts almost. It seemed to go away after awhile. It comes back very occasionally and I think, did I just walk into a real web or was it just a strange feeling I was having on my face again. I am not always in the middle of a room when this happens so it really might be a web. Ha!
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#9 miocean


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Posted 16 December 2010 - 01:11 PM

I first noticed the hardening in my face trying to get my gas permeable contact lenses out. To remove them, you pull your eye to the side and blink. I couldn't get them out! My eyes were so tight my lid wouldn't pull.That was the end of contacts for me and I hate glasses. After 6 years I have become used to them, but still find them to be a pain, fogging up, getting wet in the rain, changing from regular to sunglasses etc.

I have classic scleroderma mouth. One of these days I'll have to photograph it and post. I look like someone who was a heavy smoker!


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#10 Sharon T

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Posted 18 December 2010 - 04:14 PM

I also have classic scleroderma mouth, but since I've also always had a smallish mouth and spent a lot of years with a cigarette poking out of it, it never occurred to me that it wasn't the result of smoking!

I feel kind of the same way about the pulmonary fibrosis - I always figured I'd have some kind of lung problems because I could never manage to quit smoking for all those years, but instead I have lung issues from something totally unrelated to the smoking! Is this what people mean when they say somebody must have a good sense of humor? :closedeyes:
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