Author Topic: How to reverse the 'mummy mouth'?  (Read 2004 times)

Maria3667

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How to reverse the 'mummy mouth'?
« on: January 16, 2017, 05:06:24 AM »
Unfortunately for me, Sjogren's also manifests itself on the exterior of my body. Due to the shrinkage of saliva glands in my lips, I seem to develop the dreaded 'mummy mouth'. Fine & thicker lines are beginning to show significantly in & around my dried out lips and mouth. How can I stop / repair this horrible development? Not sure if botox/fillers are an option for us.... But I so much hate losing my looks and aging prematurely...  :'( ... I'm willing to do pretty much anything to reverse/improve the situation....
53. DES-daughter ('67), Lyme's ('98), GAD ('98), Sjogren's ('02), hypothyroid ('04), endometriosis ('14), osteoarthritis ('16), blepharitis & MGD ('18). Pilocarpine, thyroid meds, 12.5mg quetiapine, 5% testosterone. Allergies: sodium hydroxide, nickle, methylisothiazolinone, latex

cccourt1942

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Re: How to reverse the 'mummy mouth'?
« Reply #1 on: January 16, 2017, 08:54:47 AM »
Hi Maria,
     I will be 75 this year...and it's hard looking in the mirror!  Lines around my mouth aren't one of my worst facial losses.  I have never been considered a raving beauty, but presentable enough!! 
     Over 25 years ago, living in West TX, my lips felt "chapped" ALL the time...year round.  My husband told me I was addicted to Carmex.  Of course, as you well know, our lips are not chapped.  They are dry. 
     About 6 or 7 years ago I began to purchase a product by The Body Shop.  Since you are in the Netherlands, you know that English based company.  About 3  months ago (after searching for it for  weeks) I contacted headquarters.  They are "reformulating" the product so they say.  That means I was likely the only one buying it.  It is Aloe Vera based.  I have found another product which does not burn my already dry lips.  Most products have some "healing" products (such as blistex, carmex, chapstick, etc) and do nothing for what you are describing.
      I am into comfort at my age....nothing else.  So does such an ingredient "plump" your lips?  I don't know.  I smoked for 25 years...but quit relatively young.  I quit before I started with the lines.  I'm throwing that in as a reminder that is a killer.  Back to lips:  I want to be able to be able to talk or sit, or read...whatever..without my lips feeling they are cracking marble.  I am like you: I believe my lower lip glands are drying up, partially dried up, etc, as until about a year ago they would swell (get blocked I guess).  I would bite that lip until I had sores which I couldn't heal. Well..they did...but it was hard.  The dentist (who I see every 3 months) always commented on my chewed up lip).  I don't think I have bitten that lip in at least a year.
      Last thing I'll say is:  watch out for the lipstick/gloss you use.  Use a product which doesn't irritate your lips.  I cannot guide you to what those additives are as I seldom wear lipstick.  When I do I use Yves St. Laurent lipstick and Bobbi Brown gloss which don't irritate me.  The thing is: I seldom reapply the stuff.  With gooey lips (from lip balms) already, lip color does not last long.
      Oh, and the product I use now is Forever Aloe Lips with Jojoba.  I order it from Amazon.  I can't say it will work for you, just saying what a substitute for the perfect discontinued Body Shop Product.
       This is a condition not talked about a lot on this forum.  It's one of my initial oral symptoms.  25 years ago the only body part commented on by a doctor was eyes.  While they bothered me, I tht everyone had burning, stinging eyes in West TX. 
       As to botox or fillers, I think I would ask a sjogren's knowledgeable dermatologist.  This is hard to find.  An ENT won't know about the lips.  My dentist did help me with the corners of my mouth (fungal problems) and an ointment for that) and I believe she's the only one who has ever noticed and addressed my dry and affected lips.
       Good luck...and at 49...you have decades before you should worry about how pretty you are.  I just bet you are as attractive as you were at 30!!
       c3
Sjogren's, Psoriasis, Hashimoto's, Osteoporosis, Osteoarthritis, Cold hands/feet,  fatigue,  pilocarpine-25 mg , Restasis, Plaquenil, Low dose Prednisone (2-3 mg daily) Xylimelt, Citrucel, Alcon-Naturale, Tears,Omega 3, Vit.D, Caltrate+D3, Fosamax, CoQ10, Zinc, Oxtellar. Levothyroxene

Maria3667

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Re: How to reverse the 'mummy mouth'?
« Reply #2 on: January 17, 2017, 12:50:22 AM »
Hi C3,

Thank you for your compliment & bearing with me. Yes, I'm another addict of Carmex  ;)
I'm not aware of the The Body Shop product you mention but could check it out if you could give me the name of it?

"As to botox or fillers, I think I would ask a sjogren's knowledgeable dermatologist." Wish I knew where to find one! Only physicians here knowledgeable about Sjogren's are reumatologists, others just give you the glazed look...

Maybe I should start a separate topic about Sjogren's & botox? Maybe some of the ladies have experience using it?

Kind regards,
Maria
53. DES-daughter ('67), Lyme's ('98), GAD ('98), Sjogren's ('02), hypothyroid ('04), endometriosis ('14), osteoarthritis ('16), blepharitis & MGD ('18). Pilocarpine, thyroid meds, 12.5mg quetiapine, 5% testosterone. Allergies: sodium hydroxide, nickle, methylisothiazolinone, latex

Bobbie

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Re: How to reverse the 'mummy mouth'?
« Reply #3 on: January 17, 2017, 03:36:37 AM »
Hi Maria,

I too have "mummy mouth".  I talked to by dermatologist about it.  She said with
all of my autoimmune problems I have, it is too much of a risk to do injections for peels :-\
I haven't used straws in years thinking that maybe that could be one of the reasons
this has happened.  This is the first time I have seen someone address this.  I am 54 and
 my mouth looks as though I am a smoker or older like in my 70's.  Actually,
I have seen older people with smoother mouths than me :o

I have gone to this dermatologist since I have been in my early 20's.   She has the nerve to
tell me to just "smile" all the time and I won't have those mouth wrinkles.  That I don't really
need to do anything about it.  Really?

Not the answer I needed.

Good luck to you  :)    Bobbie

 

Graves,Addison's,Sjogren's,Migraines,Restless Leg,Erosive Inflammatory Osteoarthritis,Peripheral Neuropathy,Osteoarthritis,RA, episcleritis
 Plaquenil, Prednisone, Florinef, Synthroid, Restasis, Evoxac,Zofran,Lexapro,Gabapentin,Maxalt,Naproxen,Divaloprex,Omerpazole,Methotrexate,Remicade

cccourt1942

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Re: How to reverse the 'mummy mouth'?
« Reply #4 on: January 17, 2017, 10:00:52 AM »
Bobbie:  I NEVER tht about the smiling as an action to smooth the lips.  By cracky: it works!!  However, the last 7 years (prior to SjS dx) my teeth turned brown...unevenly brown..but definite streaks of brown.  Didn't realize that dry mouth keeping me awake all night was allowing rampant bacterial growth in my oral cavity thus encouraging all that "browning."  The first thing I did after dx was to plan for veneers.  The "dental community" (along with those in the know on this forum) warned against it due to possible (and highly probable) deterioration of the jaw bones, etc.  Funny thing is, my teeth are quite strong...and my jaw, etc. have held well.  The dentist I see believes I'll die with these teeth. (and their brown stains) 

I hate to say you are young, but at my age: you are.  Wear your make up...find the least additives lipstick...Maria: the product is Aloe Lip Care---but not available.  I found some on Ebay for about 35 bux a tube.  I tried to barter, and  the seller asked me where I could get if for less.  Crummy opportunist!!  I have two tubes left and alternate it with the Forever Aloe Lips.  btw: the Forever stuff is about 5.00.  Maybe 5.95....but not prime Amazon...and you must pay shipping. I bought several things ..one was SUGAR...quite expensive.  Felt good at first, then became ineffective.  It's strange this has become a topic as though it's been touched on a time or two in the last three years, never a topic that I recall.

Nice lips to you girls!
c3

Sjogren's, Psoriasis, Hashimoto's, Osteoporosis, Osteoarthritis, Cold hands/feet,  fatigue,  pilocarpine-25 mg , Restasis, Plaquenil, Low dose Prednisone (2-3 mg daily) Xylimelt, Citrucel, Alcon-Naturale, Tears,Omega 3, Vit.D, Caltrate+D3, Fosamax, CoQ10, Zinc, Oxtellar. Levothyroxene

Pete0211

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Re: How to reverse the 'mummy mouth'?
« Reply #5 on: January 17, 2017, 02:02:30 PM »
Hey C3,

On amazon, is the "Fran Wilson Aloe Lip Care SPF 20" what you used? If so, it's available, and Prime :)
Male 49 y/o; Undergoing Primary SJS diagnosis process; Cevimeline, Ubiquinol, Restasis

Bobbie

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Re: How to reverse the 'mummy mouth'?
« Reply #6 on: January 17, 2017, 02:14:14 PM »
Thanks C3  ;)   Bobbie
Graves,Addison's,Sjogren's,Migraines,Restless Leg,Erosive Inflammatory Osteoarthritis,Peripheral Neuropathy,Osteoarthritis,RA, episcleritis
 Plaquenil, Prednisone, Florinef, Synthroid, Restasis, Evoxac,Zofran,Lexapro,Gabapentin,Maxalt,Naproxen,Divaloprex,Omerpazole,Methotrexate,Remicade

bluegardenia

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Re: How to reverse the 'mummy mouth'?
« Reply #7 on: January 17, 2017, 02:24:06 PM »
hi, i  am in italy so i dont know if you have this in the states but i use a very good thing from la roche posay, not expensive its the only thing that is useful for my dry lips.they have it in all europe.the name is nutritic
and i made injections of hyaluronic acid in my face with no problems. it just lasts for a longer time than to everybody else, said my dermatologist. i never did botox, it  has always frightened me  even before sjs
60,primary sjs, diverticulosis,ibs,atrioventricular blocks 2 degree first type, acid reflux.
omeoprazole, vit c, flack seed, omega 3, b complex, nac,systane ultra, pineapple seeds

Maria3667

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Re: How to reverse the 'mummy mouth'?
« Reply #8 on: January 28, 2017, 02:13:21 AM »
Hi everyone,

Thank you so much for your input  :) . Yes it's weird this topic hasn't been touched recently as many of us are probably subject to a wrinkled mouth due to deterioration of saliva glands in the lips...

@Blue Gardenia: so did you also have hyaluronic injections around your mouth? No side effects? Supplementing with Hyaluronic capsules makes me feel depressed...
53. DES-daughter ('67), Lyme's ('98), GAD ('98), Sjogren's ('02), hypothyroid ('04), endometriosis ('14), osteoarthritis ('16), blepharitis & MGD ('18). Pilocarpine, thyroid meds, 12.5mg quetiapine, 5% testosterone. Allergies: sodium hydroxide, nickle, methylisothiazolinone, latex

MAT51

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Re: How to reverse the 'mummy mouth'?
« Reply #9 on: January 28, 2017, 07:59:15 AM »
I've had very dry lips since I was a wee girl. They were usually surrounded by a nasty looking eczematous rash. My eyes always had blepharitis, rhinitis and frequent conjunctivitis. Then, once menopause was underway, all my eczema, lip rashes and eye problems disappeared and were replaced by invisible small nerve fibre neuropathic and autonomic issues everywhere - but especially in my lips and gums. I also had synovitis everywhere and exocrine dryness affected my eyes. My lips now have these raspberry coloured telangectasias all around them and they are rather ugly I feel. But I can always cover them up with makeup if I'm going somewhere special and my husband says that they mostly only notice to me. 

I'm newly 54 and in fact feel more attractive now than I was as a kid covered in eczema with total alopecia. My hair is great these days but I have big black ugly fillings from many decades of weak teeth, probably I've had Sjogrens for many years I think.

But the pain in my lips and gums still makes me miserable even though it's invisible. And I have to shave my chin because it's so hairy and my skin is too sensitive for laser therapy. I'm not sure I'd trade invisible problems for my old visible ones though. I don't think so since both made my lips feel very sore and uncomfortable. My lip biopsy showed very high amounts of focus/ lymphoycte clusters on every labial gland removed so I know it is must be the cause of the neuropathy in my lips and gums. The thought of Botox anywhere makes me shiver but we all have things about our appearence which distress us more than others often comprehend.

So if it causes you distress then I would defintely look into getting Botox or ask a really good beauty therapist for the best vitamin cream Available to you - or both.
Hashimoto's, seronegative RA, Primary Sjogren's, small fibre nld polyneuropathy, hypertension, IBS-C, GORD, BMS, highly allergic disposition!

bluegardenia

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Re: How to reverse the 'mummy mouth'?
« Reply #10 on: January 28, 2017, 01:53:27 PM »
no maria i did not have any side effects from hyaluronic acid UNLESS the fact that it lasted much more time than to other people. may be it means that it takes more time for me to solve it as it is not a permanent filling. i did it on october 2013 and i still have some. they just tried to fill the little lines but one  has always been visible and i do not care. i did not do anything after bec now im  more scared than i was three years ago. i never did botox and  will never do.  anyway  botox is not helpful for the "problem".
60,primary sjs, diverticulosis,ibs,atrioventricular blocks 2 degree first type, acid reflux.
omeoprazole, vit c, flack seed, omega 3, b complex, nac,systane ultra, pineapple seeds

Nomad

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Re: How to reverse the 'mummy mouth'?
« Reply #11 on: January 28, 2017, 08:54:28 PM »
I'm going to try the Fran Wilson Aloe Lip Care SPF 20

I mentioned it before and wanted to mention it again. I saw this woman on You Tube that was 60ish and looked at least fifteen years younger than her stated age.

She recommended some products that I bought and both my husband and I have been using them.

It has made a wonderful difference, especially in fine lines.

They are:
Skinceuticals Retinol 0.5
This weuse at night. It is not super strong. I'm not sure I would want to use anything on my face that is very strong. At first I had to use it about twice a week, then three times, then five and finally nightly.

It is expensive. A very reasonable substitute for this is something you can get at the Drugstore called Roc Deep Wrinkle Night Cream.  It is fabulous and you can often get it on sale, since it is available at most Drugstores.

Skinceutical
Serum 10
(Basically a Vitamin C Serum)
We use this every morning.


We were both in shock at how quickly our skin improved. I would say in about ten days, we both looked younger. It's been months now and we both look as if we had a little work done or something. Just rested and refreshed.  Now,  I wouldn't be without these products. And I DO put them around my mouth and it absolutely seem to help with lines that were starting to form there.
« Last Edit: January 28, 2017, 08:56:13 PM by Nomad »
SLE, Sj.  Syndrome, IC, Atypical Trigeminal Neuralgia, ITP (low platelets)... Various meds and lots of vitamins. Trying to eat healthy; seems to help a little.

bluegardenia

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Re: How to reverse the 'mummy mouth'?
« Reply #12 on: January 29, 2017, 07:39:32 AM »
NOMAD so these are two skinceutical products? the retinol 0,5 and  the serum 10?
60,primary sjs, diverticulosis,ibs,atrioventricular blocks 2 degree first type, acid reflux.
omeoprazole, vit c, flack seed, omega 3, b complex, nac,systane ultra, pineapple seeds