Any advice on my shrinking mouth

[Suzyannayoung]

Hi guys, I have been diagnosed with Scerledema the last 5 years, had raynauds for two years previous this, also overlap of polymytosis, now Barrett's, osterperosis and the list goes on. I've got through so many things and learned to accept things now, eventually and live my life the best I can, although my old life has completely disappeared . The one thing that is getting me so down is my shrinking mouth, my lips have nearly disappeared and my mouth is puckered, I can't look in a mirror these days without getting upset. Seems crazy with all the other stuff going on but is getting worse and really struggling to cope. Pleases , please has anybody got this and have you had things done to make it less obvious ? I asked my specialist about maybe getting Botox but he said would be no good. I think he doesn't see it as a health problem, and maybe it isn't but it's getting me down, any advice out there please.

[GillSuffolk]

Hello Suzy, I can understand your feelings and concerns as I am going through this myself, so maybe there is someone out there who can help or advise us, I am not a vain person but it is heartbreaking to have to suffer all this awful disease throws at us, but each day I can see another wrinkle appear round my shrinking mouth, I was going to look into lip-fillers or botox, perhaps there is some advice out there.... hugs X

[tall-tim]

I think that the Royal Free Hospital have some staff who know about the cosmetic aspect of Scleroderma treatment. It would be worth contacting them.

Tim

[dianekjs]

I can share some of what I know about the oral manifestations of systemic sclerosis. First, what you are experiencing is very common with this disease, and it can cause functional impairment as well as disfigurement. It is important that you do mouth exercises religiously, several times a day, every day, if at all possible. The exercises won't produce a miracle, but should help to keep things from getting worse and hopefully bring about a little improvement. Exercises help most with preserving and/or improving the mouth opening, but should also help to keep the perioral tissues more flexible and supple.

To address the perioral radial furrowing - the lines and grooves that surround the lips - some people have good luck using hyaluronic-based dermal fillers, but if you want to try this be sure to clear it with your scleroderma specialist first. People with autoimmune conditions may be at somewhat greater risk of complications. Do NOT use Scluptra or Radiesse, both of which are more apt to provoke an immune activation. Juvederm and Restylane are the most commonly recommended. Botox won't fill in the lines, and is tricky to use around the mouth as it can sometimes interfere with your smile and mouth movement. The safest filler to use is your own fat, and the benefit is boosted by the fact that the stems cells in your fat can actually help to repair and regenerate some of the damaged tissue. However, there aren't many surgeons with specialized expertise in the procedure, and as with everything, there are risks.

For the mouth exercises, I have a PDF file from Johns Hopkins, but don't have a way to upload it here. You may be able to do a Google search for scleroderma mouth exercises and get some examples. Basically, you want to stretch your mouth in all directions - opening as wide as possible and holding, filling your mouth with water and pushing the water into one cheek, then the other, smile with lips open and closed, pull your lips in over your teeth and hold, place stacks of tongue depressors in between your back teeth and try to gradually increase the number you can fit, etc. One of the best is to cross your hands in front of your face and hook your thumbs into the corners of your mouth and gently stretch. Be sure to lubricate your lips before doing any of these. If you find the opening of your mouth shrinking or your teeth moving out of alignment, inquire about getting a retainer or mouth guard to wear at night to help keep your teeth aligned. I had to get Invisalign braces because my face got so tight that my bite got pulled out of alignment so badly that I couldn't chew my food. The braces have helped a lot. It's important to be very proactive about your mouth and teeth if you have scleroderma, as a wide array of oral manifestations can become quite serious quite quickly. Best of luck!

[cpns in reply to dianekjs]

That is fantastically helpful. I am at the very beginning of this particular little tragedy, so the simple exercises that you have suggested might make a huge difference to me if i start now and am diligent. Thank you for sharing. Wishing GillSuffolk and Suzyannayoung the very best of luck - these changes are quite heartbreaking & on a down day quite hard to handle, I feel very lucky to have all of these people who are willing to share their experiences and expertise with us. I hope that some of the things that you hear will help you too

[LisaCl in reply to dianekjs]

Dianekjs did Invisalign work without compromising your teeth? I am so stressed out by my teeth moving. I previously had braces and the top teeth were straight. The lower teeth were a little crooked after all these years. Now both are moving. Thanks.

[dianekjs in reply to LisaCl]

LisaCl , I’m so sorry, I just saw this. The Invisalign treatment hasn’t compromised my teeth, but I also don’t have any loosening so far. I think you would need to get the opinion of a dentist, ideally one with some knowledge of how systemic sclerosis can affect the teeth to find out if you’re a good candidate. Keep in mind the realignment with Invisalign is very gradual, and can be adjusted to be even more so if needed. I’m sorry you’re dealing with this and wish you the very best of luck. It’s been a long time since this post was started, how are you doing?

[Scottburns in reply to dianekjs]

Hi DianeI have systemic scleroderma and am researching possibility of getting Align braces. I read your article, and wonder how you are doing now? When you had a mouth impression made, how did your dentist do this? My mouth doesn’t open wide enough to handle a traditional method

Thank you!

[Jabberwok]

Here is a link to some advise from our own magazine about mouth exercises which will let you download a pdf file.

google.co.uk/url?sa=t&sourc...

[lindyanne]

Amazingly helpful replies - I can just add a little bit from Tim's comment, I have a hospital buddy who has been diagnosed since 2004 who has had successful cosmetic treatment at the Royal Free so yes, well worth contacting them.

Linda

[Suzyannayoung]

Thank you everybody for your replies and advice , it's the first time I've posted on here and is good to talk to people who understand what your going through. I will continue with exercises and will ask my doctor for a referral to see a specialist in scerlerderma about any treatment I may have. He has dismissed my concerns on the last few visits , but he will listen this time . Yesterday was a down day , but am back on it today lol. You are all wonderful people for caring so much X 😎

[pallinurse]

Suzyannayoung, I have been looking for information on this topic and have found a couple articles that speak of mouth stretching exercises. They seem to work for awhile, but in the studies the patients did not do the stretches all the time and the results did not last 6 months. I could not find an explanation for why adherence to the exercises was low. I am copying and pasting the abstract I found using Google Scholar. Keyword for this kind of search is "microstoma" and and sometimes "oral aperture".

Disability and Rehabilitation

Volume 34, 2012 - Issue 1

Research Papers

Effect of orofacial exercises on oral aperture in adults with systemic sclerosis

Hon K. Yuen, Nicole M. Marlow, Susan G. Reed, Samantha Mahoney, Lisa M. Summerlin, Renata Leite, show all

Pages 84-89 | Received 23 Nov 2011, Accepted 09 May 2011, Published online: 27 Sep 2011

Abstract

Purpose: To examine the effect of a home orofacial exercise program on increasing oral aperture among adults with systemic sclerosis (SSc). Method: Forty-eight adults with SSc were assigned randomly to the multifaceted oral-health intervention or usual dental care control group. Participants with an oral aperture of <40 mm in the intervention group received an orofacial exercise program, which included daily manual mouth-stretching and oral-augmentation exercises twice a day with a total of 6 minutes for 6 months. The outcome measure was oral aperture which was measured at baseline, 3-months, and 6-months intervals. Results: A significantly larger increase in oral aperture for participants received the orofacial exercise program was found when compared to those in the usual care at 3 months (P = 0.01), but not at 6-months evaluation. Participants’ adherence rate to the exercise program was low (48.9%). Conclusions: The orofacial exercise program intervention for adults with SSc and microstomia did not show significant improvement at 6 months. In addition to the low exercise adherence rate, insufficient frequencies, repetitions, and durations of the orofacial exercises may contribute to these results.

Implications for Rehabilitation

• Microstomia in adults with systemic sclerosis (SSc) has profound impacts on their quality of life.

• Orofacial exercise programs have the potential to improve the size of oral aperture.

• Brief daily orofacial home exercises for 6 months did not result in a significant increase in the size of oral aperture.

[Hidden]

It's a pity the conclusion is reported as 'doesn't work', when apparently the exercises weren't always tried!

[Suzyannayoung]

Hi everyone , I had had a flare up since June last year so have been and still am on high dose steroids and immunosupprest s. Unfortunately it has been my lungs this time that have suffered, lung function gone from 69% in May 2017, down to 51% in October 2017, this was picked up initially from a ct scan. I'm seeing lung specialist on Monday , this has floored me as am quite breathless on not doing much, everything is so hard. My specialist will refer me to Royal free when things have setteld down. My face is so fat from steroids , that and shrinking mouth I look quite a sight and did stop going out but am slowly going out in the day for an hour. I hate this disease , it's taken over all off old me now 😥

[Marcellina in reply to Suzyannayoung]

Feel the same for all the same reasons you described. Keep strong i am very lucky to be alive and reasonably well despite my look. Everyday i see many of my colleagues close to end of life illnesses and i fell that in a way i am very lucky. I prefer my wrinkled mouth and witch look to a lung or kidney tumor. I am looking into a treatment to fill my mouth wrinkles will update you.

I have just read about autoimmunsuppressant i think i will cross them from my list.

[Hidden]

Hope you are still going out. I stayed home for 3 years and that led to a breakdown. Everyone is more concerned about who is looking at themself to even look at you. It will get easier. I am trying a 'Paint Night' or cooking night.. Any activity that has you doing stuff rather than having to chat. Loving thoughts to you