tingly stiff face and hands anyone?

[cinmac]

Hi to all,

In my first flare I had trigeminal nerve involvement and my face and lips tingled and burned.  In this flare I started out tingly but now my face and fingers feel stiff, like they are swollen, but they are not swollen.  The backs of my hands burn too.  I am a bit scared cuz scleroderma comes to my mind but I have had 2 ANA's both negative and I think  scleroderma is usually serum positive.  Any one else experiencing anything similar?

cinmac

[lipin3]

Hi cinmac,

I am a newbie so I do not have much advise. But I get tingling in my mouth, my hands and my feet, they do not burn but they tingle like the dickens. It is even worse when that thing called stress comes about. My fingers will feel swollen and stiff on occasion as well, I have yet to pin point why this happens but I am sure it has something to do with stress doesn't everything

Stay Positive &
God Bless

Lisa

[missyb]

are you drinking diet soda?

[eyeamdry]

In my first flare I had trigeminal nerve involvement and my face and lips tingled and burned.  In this flare I started out tingly but now my face and fingers feel stiff, like they are swollen, but they are not swollen.  The backs of my hands burn too.  I am a bit scared cuz scleroderma comes to my mind but I have had 2 ANA's both negative and I think  scleroderma is usually serum positive.  Any one else experiencing anything similar?

Yes, yes, yes.  My lips (especially) tingle and burn all the time.  It started slowly a few years ago and now it's 24/7 although Lyrica helps some.  My lips feel like they are VERY BIG AND PLUMP.  Sort of feel like the movie stars who have exaggerated lips filled with collagen these days.  I wish I could think of one, but I'm having brain fog. 

I also get this tingling on the backs of my hands and it feels like bees stinging me.  This is part of my Primary Sjogrens and has been since my diagnosis two years ago and even prior.  I don't quite think I've come across anyone but you that has the lips burning and tingling to the extent I have.  Lucy

P.S. My lips feel like they're swollen, but they're not.  It is just how the numbness/tingling makes them feel.

[Chickpea]

Hi cinmac

That sounds really unpleasant for you.  Is the stiffness inside your hands or is the skin tight?  And does the swelling sensation in your face come from the skin or does it seem that your muscles aren't responding?  As far as I know with scleroderma the stiffness comes mainly from skin thickening and tightening, rather than from muscle/joint involvement which we get with SjS.  But I think you should check this out with your doctor.

Take care - Chickpea

[Victoria05202000]

Cinmac, I get this when I have a raynaud's episode.  I believe Chickpea is right on the assumption that scleroderma comes from the thickening and tightness of your skin. I have been tested for this a few times because of my kidney involvement with Sjogrens. It has come up negative including through biopsy. 

Hope you feel better soon!
Vicky

[chrisgirl]

Hi Cinmac,

I get this tingling face and lips, not so much burning.  It is generally around the left side of my mouth and nostril (this part of my nose even has twitched, very strange feeling.)  My tongue and gum on that side will tingle as well.  I am still in limbo, so don't know if this is a sjs thing or not.  What part of your face was affected by the trigeminal nerve involvement?
Weird, but many times I get this if I have been on the computer for a while or if I am in flourecent lighting.
Christy

[cinmac]

Hi, Thanks for responses.

  I quit diet soda some months ago.  My trigeminal nerve pain started on my right side of my face but eventually, affected the top of my lips around my nostrils and both cheeks.  It feels like lightening riding on the surface of my skin and sometimes I twitch too.  10 years ago I was told it was not a symptom of SS, but now it is listed in the National Association book about ss.  My diagnosis is ambiquous by the way although old rheaumie has me listed as serum neg SS.

The stiffening of my skin is strange.  I don't think it is muscle involvement.  I feels like my cheeks are swollen, espscially along the hairline on both sides, but they are not swollen.  The backs of my hands burn and sometimes appear red, as do my cheeks, and my fingers feel like I have been walking on a hot day-that puffy sausage feel.  The skin does not look tight.  I am definitely going to mention it to my rheaumie who I see May 4th, but just wondered if this is something most SS people have or another weird thing.

Good night and sleep tight to all, thanks again
cinmac

[Wynter]

I have the same thing alot of you do. The lip thing drives me crazy, as it's always there, but is worsened when I rup my lips together or chew food. I have the burning, tingling thing in my nostils also.

[lelole]

Hi cinmac,

Probably not much help as I am not diagnosed yet, and have definitely got seronegative.  I have the stiffness in my fingers you mention, and very rarley I also get redness.  It 1st happened about a month ago (the fingers), just before my 1st rheumy appt, and I mentioned it to him and he didn't seem to worried about it - he acted like he expected that in someone with SJS...

Def bring it up at your next appt, hope it goes well

Leah x

[Wynter]

Hey All,

Will this tingly sensations that we are talking about ever go away? Or is it nerve damage that we have to live with?