Face changes

[AMDP]

Hi all, the whole left hand side of my face has started to feel quite uncomfortable, a bit numb and tingly like I’ve been to the dentists. Is this what happens when scleroderma and or MCTD effects the face please?

[momo17]

I’ve had facial changes for years with scleroderma - loss of volume in cheek area and mouth decreased in size so lots of lines round mouth, nose looks pinched but have noted that round my mouth area recently I’ve had that feeling. Tight n tingly. Have you had your jabs? Mine seems to have been since them

[AMDP in reply to momo17]

Thank you for your reply. Yes I’ve had 2 jabs but not sure they are connected Ax

[Kilncadzow]

I had scleroderma 40+ years and I lost all the expression lines on my face. Sounds good but didn’t look good - looked as though I’d had a bad face lift! Lost my dimples too. All back to normal now- could do with a few less lines on my face now!

[AMDP in reply to Kilncadzow]

Thanks for your reply I’m so sorry you have been through that. When you say back to normal are you saying the skin on your face has softened up again? Ax

[Kilncadzow in reply to AMDP]

Yes - more or less normal. Maybe fewer wrinkles than some 74 year olds but I’m not complaining about that.

[AMDP in reply to Kilncadzow]

Wow that’s amazing. X

[positivedaybyday]

Hi, I can relate to your issues & sorry to hear of your symptoms.

My problems started with not being able to open my mouth as before & feeling ad if my teeth didn't fit anymore.

It was a truly weird feeling!

The problem with our disease is that each individual seems to have different issues & vary so much in severity

Talk to your consultant & see if they can help or advise.

I was given a face leaflet on facial exercises which did help.

As I've been taking Predisolone my face went moon shaped until I was able to reduce the dosage.

My mouth is also restricted.

The tightness in my cheeks was very bad.

It's better now after 4 years but I feel I look like a chipmunk storing food in its cheeks.

On the positive side, I am the same person inside & focus on this when any negative thoughts arise.

I hope you can find a way to manage your symptoms & don't forget you're lovely on the inside no matter what happens!

Big Hugs

Xxx

[AMDP in reply to positivedaybyday]

Thanks for your reply it means a lot to have just a little positivity Ax

[Hidden]

Hi there. I’m not sure this will help but I’ve had this tingly sensation just as you describe on left side my face for years. Presently it’s bad.

I no longer worry that it’s scleroderma as I used to because, despite being specifically antibody positive for systemic sclerosis, I don’t get the skin tightening on my hands or other changes eg nailfold capilliaries. Personally I think mine is Sine scleroderma and it’s mostly affecting my GI tract - although I do have telengecstasia spots on hands, face, chest and feet

I attribute the left side tingle and feeling of pressure/ tightening around my front teeth to the mix of small fibre neuropathy of Sjögren’s and severe cervical degenerative disc changes - which also sometimes cause referred migraine. On my lips I have sun damage related pre-cancer that has to be monitored closely and treated aggressively.

My diagnosis is Overlap CTD which I’m told is closest to MCTD. However, due to lack of nailfold changes, I’m told I don’t have scleroderma yet and my predominant diagnosis is still Sjögren’s (which I’m antibody negative for🤷🏼‍♀️).

[AMDP in reply to Hidden]

Thanks for your reply these conditions are all so very complicated. I have MCTD with Sjogrens and Sclerodema. Ax

[Hidden in reply to AMDP]

Yes they really are complicated and of course each of us is unique. But just from my own experience - the facial tingling you describe fits a lot with my experience of small fibre neuropathy of Sjögren’s and degenerative disc disease (wear and tear arthritis) affecting the neck.

Unfortunately, other than the nerve gating drugs such as Amitriptyline, Carbamazapine and Pregabalin - which help some people but were awful for me - there’s not a lot on offer for this kind of nerve related problem.

[AMDP in reply to Hidden]

Thank you again for your reply. I am already on pregabalin and gabapentin but I'm not sure either of them is helping any more. I'm due to start baricitinib soon so will see if that helps. Thanks again, take care of yourself Ax

[GGhere]

Hello AMDPYes I have face changes and I'm convinced I now have a nose that isn't mine. I guess the culprit is scleroderma, when my skin started tightening I thought Yipee! a free face lift. However that's not the case, my face is tight but it hasn't got rid of my wrinkles (I'm 80) and when I wipe my nose I know it isn't mine because it feels all wrong it's a bit pinched in too - my family thin I'm barmy when I tell them this isn't my nose. All we can do is keep smiling.

🤣

[Poppy221]

I sometimes have nose numbness and a slight numbness to face - but no tingling. I think it comes on more when I am tired or hungry - especially both.