Loss of tissue in face

[molly19]

I've never come across anyone that has lost tissue in face, I've had three major operations in my twenties ( now 51 ) to build my face up to look normal. Very shy with my appearance and don't like socializing. Had full blown lupus since 14 years old. Sjgrens, borderline osteoarthritis,reynauds. And muscle weakness. I take hydroxychoquin, azathioprine, prednisolone, vitamin D. On and of calcium. Also get terrible shivers and skin is so prickly unbearable to touch and feel awful. Don't know what that is, it only happens at night. How do you explain that to doctor. Well that's enough about me. Sorry for moaning. New to this site.

[Hidden]

Hi Molly -sorry you are suffering so much. Your description of tissue loss around your face makes me think of Scleroderma but I am sure that your rheumatologist would have considered this possibility. Still you may find the Raynauds & Scleroderma HU has people on it with similar issues too?

Regarding the awful tingle at night - I have this every night - mainly in my four limbs but slightly in my face too. In my case I'm told it's probably a small fiber neuropathy - cause as yet unknown but I'm having MRIs and a lumbar puncture plus EMG and nerve conduction for it on Friday to see if they can find the cause.

I have read that this can sometimes affect the face instead or as well and can be part of autonomic/ axoninal neuropathy I think - although I'm no expert but just learning a bit more every day. I don't know why it is always so much worse at night apart from perhaps because we have nothing else to distract us then?

It might be worth asking your Doctor about Amitriptyline or Pregabalin or the drug I'm on called Duloxetine if you haven't already tried these for it?

I only have diagnosis of Hypothyroidism and RA with Sjogrens and SFN thrown in secondary to the RA so far - but your loss of tissue must be very difficult to cope with. I hope you can soon find answers and a treatment that works.

[molly19 in reply to Hidden]

hank you for responding. You know this has helped me knowing there are others out there.and people that understand. Hope you well just now. Thank you.

[molly19 in reply to Hidden]

Hi twitchy toes ,you know the prickly skin we get does yours make you so cold and you feel unwell till it passes hours later. Well today I went to doctors with my skin as it has erupted on face. Explained to him of my prickly skin he said he never heard of it and then said my house must be cold ( anything but cold) and then he ignored it. I came out of doctors quite tearful of the feeling of he doesn't believe me. I'm fed up struggling what's the point in going to doctors. How I feel alone. Sorry for putting this on to you.

[tennissenior]

what it is, Molly, is Scleroderma, one of the "wonderful" diseases that go along with Lupus. I lost most of the tissue on the right cheekbone. I've tried Kelocote, dermatolgists, and what seems to help is Aquaphor and a mild moisturizer. I'm so sorry you've had this most of your life. So young to be sick. I was diagnosed about 3 years ago - but I am 71. I play tennis and swim and I take nothing for the Lupus. My doctors have tried various meds and the results only last a few weeks but the side effects are not worth it. I try and stay active and that's what fights what we have. As for your face - I'm sure you see it a lot worse than the people looking at you do. We're all a lot more critical of the way we look than what people actually see. It's a lot to deal with - I have everything you mentioned. Try some Grabbers Hand Warmers for the Raynaud's. They do work and very inexpensive. I can no longer eat ice cream or be in a cold room or even lift a container of milk without my fingers turning white and blue. I've had 4 surgeries on my eyes and they still aren't right. My Dad had Lupus so mine is genetic. I have wonderful doctors and that means the world to me. I didn't luck out with a family support system, but I do have caring friends. WE are Molly! Don't let this get you down....you CAN fight and you will!! We are here for you!!!

[molly19 in reply to tennissenior]

I use E45 on my face. My skin is very thin and my implants now tender, so need soft pillow. I myself take exercise in walking my 15 month old puppy. She is the best thing ever for me. You sound fit with your sports.

[tennissenior in reply to molly19]

I'm fit, yes, but it's a daily fight for survival! We ALL know that. No one who doesn't have what we have, can feel what we have. That's why we're on this site.

[mummi5]

Hi Molly. Yes, like you I suffer from loss of tissue in my face. It's on my left side and is due to the glands in my face calcifying and shrivelling up. I'm very self conscious about it so completely understand how you feel. I was told they couldn't operate as I have a calcified growth very close to facial nerve and it would almost certainly cause permanent facial palsy. The changes in my face and other symptoms began when I was a teenager although I was only diagnosed with lupus and sjogrens four years ago (I'm now 46). I also get the tingly, prickly skin at night for which I take amitriptyline. It does seem to help! I also take hydroxychloroquine, azathioprine and prednisolone. I've never posted on here before as I'm a little shy talking about my illness but I've never come across anyone else that has problems with their face.

[molly19 in reply to mummi5]

Hi mumm15 no facial things are awful. Had a lot of taunting at school. Hence made me ask for surgery. It's both my cheeks so they took bits from my bum and groin and placed in face .your on the same drugs as me. I've never mentioned to doctor of prickles and shivering.I'm new to this site to, never heard of it before.I'm 51

[Starbright3x]

Yes!!!!!! I have this too Molly! I thought I was about the only one...I have tissue loss on the right side of my face...it really isnt that noticeable until a selfie or picture is taken..You can definitely notice it in pictures..I have never got a Scleroderma dx...but I have bad raynauds, and often wondered if it lurked somewhat in the background. .I do have SLE and PsA...xx

[Starbright3x]

The skin prickling is wierd also...I get that also in evening...Sometimes it feels like I have been outside in the cold..Other times it will feel like a hum or vibration.

[molly19 in reply to Starbright3x]

I had tried to find out for years if anyone's face was affected. So I'm not alone. I'm very self conscious of my appearance. My face at the moment has erupted with rash started with a botched on nose now my nose crimson and tender got doctors on Monday. When you get skin prickling do you feel so cold and nausea with it, and you feel when it's starting up.

[jenstar29]

Hi molly I know this is an old post but I just came across it and it's sounds familiar. I have lupus panniculitis (profundus) which is a rare form of lupus where fatty lumps of tissue form under the skin. In my case both of my cheeks have been affected and left horrible scarring and indentations, my boobs have both had lumps one has been there for 8 years and getting more painful, and also had one in my arm. Does this sound anything like yours? X

[molly19 in reply to jenstar29]

Hi jenstar, mine started with large blotch, can t remember if it was raised or not. But my cheeks went hollow ( something like I had been starved and all clapped in ) if that makes sense. The surgeon built up my cheeks with my bum and groin tissue. My tissue in face wasted away. I hope you are alright, your saying fatty lumps leaving scaring, I feel for you when it's your face. I suffered lots of torment from people. There doesn't seem to be many at all that has facial damage. Let me know if I've been of help. X

[Stillhere4now in reply to molly19]

Hi Molly,

I have the same exact problem, it’s terrible and doctors can’t tell why it’s happening. Within 12 months of a bad flare I lost all collagen in my face.

They said they see it sometimes in lupus, but it’s rare.

I don’t know what I could do about it, but it aged me 30 years

[molly19]

Hi Stillherefornow. I feel for you, you are the only one that I know off It must be very rare indeed, I myself hated the way my face changed all drawn in. Remarks being said at me hurt the most. I went through 24 hours of cosmetic surgery over I think 2 years. I'm better than I was but still very self conscious of the way I look. May I ask is it both your cheeks that has lost the collagen , my face started to change when I was 16 years old now 55 yrs. Lupus is a horrible disease. You take care, really nice to hear from you. 😃 Julie

[CJT37]

I’ve lost tissue in my face, it’s a relief to know I’m not the only one

[molly19 in reply to CJT37]

I must have missed your post. I hope you are ok. Not nice at all. X