Facial paralysis : I’d like to know if anyone else... - LUPUS UK

LUPUS UK

31,602 members28,008 posts

Facial paralysis

mainlyconfused profile image
12 Replies

I’d like to know if anyone else has had issues with repeated facial palsy/paralysis? My lower face is affected, sometimes so bad that I cannot smile. It’s rare, but I’ve read a few papers on peripheral nervous system involvement. Thank you.

Written by
mainlyconfused profile image
mainlyconfused
To view profiles and participate in discussions please or .
12 Replies
stiff19 profile image
stiff19

Yes I have and still am and it’s now affecting both sides of my face. I have wondered also about it being a nerve problem but then I wonder a lot. I was supposed to see a neurologist but never did got fobbed off with a referral to a hospital miles away which has never come to fruition but I also have other symptoms too as well as my face. I have a dropped eye on the right side and have twice now had my face temporarily paralyse on the left where I can’t smile or close that eye. Sorry I can’t help as I need the help myself too but yes I can relate sorry . Does your forehead go tight and face like all your wrinkles disappear mine goes so tight and smooth at times. I’ve also had tongue and lip swelling but thankfully not often. Best wishes

mainlyconfused profile image
mainlyconfused in reply to stiff19

That sounds awful. I too have been waiting to see a neurologist even if it’s just to discount anything else like Ramsey Hunt Syndrome etc. (you might also want to look into this) Each time it happens it recovers a little less. My rheumatologist says it could be Lupus related but the neurologist needs to see me. It really gets me down. I have to move my mouth with my finger at times. It mainly affects my mouth and one side of my lower face…

stiff19 profile image
stiff19 in reply to mainlyconfused

I never seen a neurologist only spoke to on phone and Ramsay hunt was mentioned along with other things but he left and since I’ve seen no one . I hope you get to see someone , I fear my face is permanently ruined now it’s been so long and I fear for the other side now . I had many things mentioned including lupus but no one has dealt with the symptoms or diagnosed anything so I gave up and waiting for a referral that probably will never happen. I am so sorry you are going through this, it’s horrible having facial disfigurement, I get so sad looking at pics of my face before all this started . I hope you get to see neuro soon take care snd best wishes 🙏

No, but I do know there is a charity/association set up to support facial paralysis.

mainlyconfused profile image
mainlyconfused in reply to

Thank you. I know about them. We think this is to do with my lupus as it recovers then shuts down again then recovers…so on and so forth. There have been a few cases documented in the USA. I just wondered if anyone else had had this.

stiff19 profile image
stiff19 in reply to

butting into your conversation sorry but thank you I read your answer and have contacted a charity 🙏

steve61 profile image
steve61

Hi, hope you on the mend , I was taken to A&E Sunday thinking I'd had a stroke but it turned out its Bells Palsy!Thankfully it wasn't a stroke although I have all the symptoms, drooped left cheek, left eye not close, eyebrow not lift, can't smile properly, sore and blurred left eye, and tinnitus, bit my tongue a few times, and dribble when drinking, started using a straw!

On 10 steroids a day for 10 days so let's hope it improves!

I do have Lupus SLE not sure this as anything to do with this onset of BP, was diagnwith this in 2014 but doctor said there's no known cause, on the fb page I've seen pics of children with BP bless em!

It can hit you at any age!

I've joined a UK Facebook page Bells Palsy Support Group UK and found it very helpful and friendly!

Take care Steve

AgedCrone profile image
AgedCrone

Have you ever had investigations for Bell’s Palsy?It’s a very annoying but usually not very serious condition,,…mention it to your doctor next time you see him/her.

Ps wrote this before I saw Steve’s post.

mainlyconfused profile image
mainlyconfused in reply to AgedCrone

Originally thought it was Bells palsy, but now think it’s unlikely as it happens every month or so. Used to recover, but losing more movement each time.

AgedCrone profile image
AgedCrone in reply to mainlyconfused

I’m very sorry to hear that …I do hope you see the neurologist soon,Have you asked to be put on the neuro cancellation list…If a patient cancels at the last minute you could get called?

mainlyconfused profile image
mainlyconfused in reply to AgedCrone

Result. I had a call today from the neurologist’s office. I have an appointment the week after next. I only hope it’s not too late to repair the damage to my face :(

MorIlse profile image
MorIlse

I totally understand you. I have Facial Paralysis since 2009 after a surgery to remove an inner ear tumor. I was told not to do anything that the nerve would come back... big lie! after six months I started acupuncture, which helped me tremendously, so exercise the muscles. Try chewing sugarless gum, it exercises the facial muscles.

I was diagnosed with lupus in 2020, but fortunately my organs are not compromised so far so they call it undefined. My main symptoms are joint aches, trouble sleeping and blood works that indicate lupus..

I understand you, I know how it feels to see your face differently, not been able to smile without feeling your face pulled, not been able to chew and drink at the same time, like soup, taking a big bite of a fruit without spraying who's in front of you. Rice... that can chock you.

Sleeping: dry eye and dry lips, so use eye drops and chapstick.

I was never told that facial paralysis has anything to do with lupus, but it is interesting to see the comments made to your post. The steroids help me but didn't do enough for my condition. I hope you try acupuncture.

You may also like...

Lupus and cosmetic facial fillers

fillers injected and how they feel afterwards ... thanks

Daughter - Facial Rash Update

some other doctors to look at it. She said lupus is rare but doesn't mean to say it's not that but...

Daughter facial rash - update

Hi all, thank you so much for all of your kind comments over the past week. You have definitely...

Daughter's Facial Rash - Update

show up in blood anyway, but that there is nothing else to suggest lupus at the moment. Another 5...

Facial sweating - any advise please?

I get a lot of facial sweating - no where else just my face! Even when it's cold I'm sweating! It...