Lip Question

[Wynter]

Does anyone have problems with the nerves in their lips? Mine have suddenly started to feel numb all the time. If I suck through a straw, lick my lips, or rub them together like after you put on lipbalm they get really irritated. They aren't that dry because I constantly keep lipbalm on them, but it feels like the nerves are irritated. Does anyone else have this?

[Wynter]

I forgot to mention that I know this is a nerve problem because yesterday I had a root canal on tooth #31. After the dentist put in the anastetic, my lips felt much better. So, for several hours they felt normal and after the anstetic wore off, the went back to that numb irritated feeling.

[baddabingtim]

Did you have a lip biopsy in the past - I had 2 and get these often

[Wynter]

I had a lip biopsy last July with no problems, it heeled nicely. This has only developed in the last few weeks.

[eyeamdry]

YES, YES, YES
I had lip numbness even before I knew i had Sjogrens.  I have been taking Lyrica for trigeminal neuralgia pain and it helps the lips.  Lyrica doesn't last long and is very expensive.  But, I don't think many have the numbness we are talking about., 
When I had a lip biopsy, it made that area worse in numbness and it's that way three years later. 

Lucy

[Wynter]

How long did it take for the Lyrica to kick in? I have other nerve problems with my mouth, which is unusual for SJS.

[eyeamdry]

Not long......a few days.  I'm not sure that the numb lips would be worth taking Lyrica for.  I had to fight my insurance co for 4 months to pay for it, and even then I have to pay $90 for my part a month.  Lyrica wears off very quickly6.  I take 100 mg 3 x a day.

I'm mostly taking it because it also relieves pain in my left eye from Sjogrens and two surgeries.  Lucy

[Patze]

Hi Wynter,

I'm also with Lucy, I too had a terrible time with my lips, they were very dry, swollen, splitting, and very painful.  And like Lucy, I too am on Lyrica 75X3 per day, and my insurance doesn't give me a problem with this prescription, it kills me on Provigil though (double ouch on the cost of both these drugs).

Take care -

Patze

[Wynter]

The outside of my lips haven't been that bad because I contanstly them mosturized. However, just on the inside is where the problem is. When I rub the inside of my lips with my tonque or put the lips together where they touch, it's like the nerve goes crazy. Any suggestions?

[Wynter]

Forgot to mention this earlier. I had a root canal the other day and after the dentist numbed me up alot of my lip pain subsided. So that tells me it defenately a nerve issue.

[cinmac]

I have a terrible time with my lps.  They feel like electric current running through them.  In my case, it is trigeminal (and maybe other facial nerve) nerve involvement and from what I've been told is quite common in Sjogren's.  I take tramadol, which helps a bit, and do ice packs but I find it to be one of the worst symptoms.  It affects my cheeks too and for some reason gets worse in the evening.  Steroids seem to help reduce my nerve involvement, but my face seems most resistant.

There is a lot of info online about Sjogren's and CNS involvement.

Hope this helps.