I have constant dryness of the mouth, and c... - PBC Foundation

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I have constant dryness of the mouth, and constant tingling and burning of my lips. This is horrendous and is driving me to despair? HELP

susanburgess profile image
19 Replies

The constant dryness in my mouth and tingling and burning sensation which is worse on my lips is horrendous. It is making me feel like I do not want to live.This is the most annoying condition I have had to do with PBC, although the itching in my head has now stopped. The doctor has put me on a low dosage of anti-depressants to try and calm the nerve endings down, but I am at the end of my tether. It has made me feel like ending it all as I cannot carry on like this. Has anyone else had this and what have you taken? Or would there be any foods that you would recommend to avoid. I am aware now that I need to eat various foods, but would like to know what's best.

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susanburgess
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19 Replies
cazz22 profile image
cazz22

hi susanburgess.im sorry to hear of your problems.i hope they settle soon.i bought a book(used) of amazon called liver cleaning diet by dr cabot.while i dont follow it word for word its made me reevaluate my already good diet to an even better one which has made me feel better.i hope this helps.take care and keep strong.x

susanburgess profile image
susanburgess in reply tocazz22

Thank you for the information I have sent for this book today.

Val02 profile image
Val02

Hi I too had/have the the tingling and burning in my lips/mouth and hands and feet. The neurologist put me on Trazodone which certainly calmed it all down.

Nancybeck123 profile image
Nancybeck123 in reply toVal02

Glad that helps. I will ask my dr.

susanburgess profile image
susanburgess

I have been on ursofalk for 8 years and I have been alright no problems.

cowren profile image
cowren

Hi constant dryness could be sjorens disease have you spoken to drs

I have dry mouth especially in the morning and I have put it down to bp tablets

It could be one of your meds causing this also

Hope you find some relief soon xxxxx

roseter profile image
roseter

I get the same burning and have now been diagnosed as sjogrens syndrome secondary to pbcyou will just have to be careful what you eat. I avoid any spicy foods even tomato ketchup is too strong for me. Also oranges and oats make me bad.any pickles just have plain things :-(

sharon7716 profile image
sharon7716

Hi, I have the dry mouth and it used to wake me up what seemed like every hour through the night, then my Dentist gave me a sample tube of biotene gel, WOW with this I now get a whole nights sleep and it helps throughout the day. You can get it in BootsSharon

susanburgess profile image
susanburgess in reply tosharon7716

I never wake up with this problem I am changing my diet as I think this causes the problem in the day time. I think we have to look at what we eat and start to eliminate certain things my daughter has told me that what grows in the ground what flies and what walks on the ground is what you can eat. I hope this might help I assume you have the same condition as I have pbc

Flymccoll profile image
Flymccoll

Hi I have pbc and sjogrens which the docs, dentists and the opticians can give you drops for, depending on where you are affected. My dentist also advised me to use sodium, laurel sulphate free toothpaste which also helped. I also have coeliac (another of the autoimmune lot) and I interestingly get the tingling in my mouth and lips when I have been accidently glutened. If you have any other health problems it might be worth getting tested as it is now just a simple bood test. good luck .

petula profile image
petula

take a look at your meds; amytriptaline is known for causing dry mouth. since I stopped its been loads better

petula profile image
petula

Amitryptaline ( sorry) not sure of spelling, is known for causing dry mouth. Don't waste ur money buying products, get a script off doc; "biotene" is good, well it works for me! but since stopping amitriptaline its loads better

Nancybeck123 profile image
Nancybeck123

Hey Susan, I understand your problem with your dry mouth and lips tingling . Please don't give up. All the symptoms come and go. The itching has stopped for me but the tingling and numbness is bad too. I am going to use b12 vitamins. Ordered them and they will be here tomorrow. I'll let your know if they help. I am so lazy lately. Just want to rest.

susanburgess profile image
susanburgess

I chew gum sugar free for the dry mouth. My doctor gave me Amitriptyline for the tingling and burning sensation

LenaChandler54 profile image
LenaChandler54

Hi susan, I live just south of Clare in Belchamp st paul I believe we are close to one another

?

susanburgess profile image
susanburgess in reply toLenaChandler54

I live in Newmarket only lived there for six years.

LenaChandler54 profile image
LenaChandler54 in reply tosusanburgess

How are you doing with your pbc? I was diagnosed 5 yrs ago. My main symptoms are joint and muscle aches and tiredness.

Calogia profile image
Calogia

Susan...I have had this ex act problem and my lips are burning really bad right now. Lemon, anything with salt. They really make my lips burn. I put salve on them. It usually lasts a few days but you're right it is horrible.

I hope you get some relief!!

Calogia

susanburgess profile image
susanburgess

I chew gum when my mouth gets dry and the doctor gave me xylocaine spray to put on my lips I spray a little on my finger then put in on my lips the lips stay numb for a little while hope this helps.

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