Scleroderma has shrunk my mouth to point where dentist can hardly get instruments into it. Anyone else shared this experience?

[marshmallow69]

I'll probably have to seek more specialised help, but wonder if anyone else has had this problem and, if so, how was it dealt with?

[zenabb]

I have the same problem. The dentist has a lot of trouble with my mouth. I don't think that there is much that can be done except for the dentist to keep trying. I have had trouble having dentures as my dentist could not get a good impression, but he sought advice and made adjustments to his tools and now I have good dentures. With time passing my mouth seems to have relaxed a little. All problems are solvable more or less.

[marshmallow69 in reply to zenabb]

Hi Zenabb, Many Thanks for your encouraging reply to my post. It's good to know that there is a way of getting around the difficulties. My dentist is currently seeking advice regarding special tools, so hopefully he will have good news for me on my next appointment.

[MrsH]

Pediatric dentists can help, since their tools are smaller and they are accustomed to working in smaller mouths.

[marshmallow69 in reply to MrsH]

Hi MrsH, Thank You for your advice. I will certainly take it on board should my own dentist fail to come up with an answer to the problem.

[Glynis]

Hi I also have the same problem, my dentist has said that She may have to refer me to the dental hospital in the future , luckily I didn't need any treatment on this visit.so will see what happens if anything in 6 months Time. Hope your dentist can help you.

[marshmallow69 in reply to Glynis]

Thanks for replying, Glynis. It's nice to receive support from fellow sufferers who know exactly how it feels to have this problem. Hope all goes well for you on the next visit to your dentist and hopefully it will be a long way into the future before you need to be referred to the Dental Hospital.

[Brian]

I have the same concerns and problems and dread the day that I will need dental work. Are there any facial exercises which can done to help? I know some days my facial skin and jaw muscles are very tight and restricted.

[marshmallow69 in reply to Brian]

Hi Brian, You have my full sympathy. It's a devil of a thing to put up with. To deal with the tightness of facial muscles I find it helpful to slowly mouth the vowels (a e i o u) several times over each day. I started with a count of 10 times, which didn't cause too much discomfort,and gradually increased the number each week. It may not work for you, but it's got to be worth a try at least. Try dabbing a little vaseline at the corners of your lips. It just gives you that little bit extra stretch when you open up your mouth. Hope this might be of some help to you.

[queen]

Hi Marshmallow69, my name is Lynette I was diagnosed with scleroderma in 2011, don't have any facial issues at the moment, my issues is with the lungs just finish a cycle of chemotherapy. I attended that the Scleroderma Society Conference in June 2013 and had the privilege of meeting a specialist physiotherapist by the name of Will Gregory who putting together a leaflet of a series facial exercises to help with the issues you are describing for information contact Scleroderma Society or the Royal Free Hospital.

[marshmallow69 in reply to queen]

Hi Lynette, Thanks for helpful info. I also have lung involvement (fibrosis). I'm sorry to hear you have had to go through chemo. I know that can be a very unpleasant experience. Hopefully the outcome of your treatment is good and I wish you the very best.

[Skwiglee]

Hi! I had a very tight mouth. So much so, that I even had to force grapes and cherry tomatoes in my mouth. It also affected my lower eyelid. Leaving me looking like I had a stroke and I could not smile.

I had hot stone treatment on my face. I can now eat normally, in fact stuff my face! And a big grin - which is why I called it my £25 smile! Life is so much easier, no more nibbling my food like a mouse. And it is a very enjoyable experience and permanent. I do have a very experienced therapist, here in Bristol. So I don't know if it's available in other parts of the country.

[bluesgirl in reply to Skwiglee]

Hi I am fascinated about the hot stone treatment you mentioned. Could you tell me exactly how it helped you, in particular did it help with microstomia (tightening if the mouth). My tightening is starting to affect my ability to pronounce some words and of course I am developing the 'Sclero look'. In the past I have had mucosal enhancement (N.H.S.) but believe me it is very painful and doesn't last for very long.

A more natural/organic solution sounds better

[marshmallow69 in reply to bluesgirl]

Hi Bluesgirl. Please refer to Skwiglee re stone therapy. She has a link to a therapist who helped her in this respect. It hasn't worked for me, but that's not to say that it won't work for you. Good Luck!

[Skwiglee in reply to bluesgirl]

Hiya! So sorry for not answering, I rarely come on here. I've just had a lovely hot stone treatment today. At present, we are working on my legs. It feels so great to be able to walk properly again - especially as it is freezing!

Louise Alley is not your common or garden beauty therapist. She actually had bespoke hot stone training and she includes other therapies such as Kinesiology and EFT without extra charge. People do travel great distances to see her. So, if you don't live near Bristol, I would suggest it would be well worth your while to perhaps book into a hotel overnight. Just ring her and discuss it with her over the phone.

Forgive me if I've already said this. But when I first met her I looked like I'd had a stroke. As my mouth was so tight it pulled a lower eye lid down. So I was lopsided. She took a stone and simply erased it like a rubber. A couple of seconds and it was gone for good. I booked in for her to do only my face for £25 for the 1/2 hour - she takes an hour, but only ever charges for 1/2. She didn't touch my throat or chest.

After 1/2 an hour I could smile again, and haven't stopped since! Overnight the skin on my throat and chest loosened up and still is. Lou is very intuitive. Quite frankly she could charge a fortune for what she does. But that's not her style. She quite honestly is one in a million.

I must go, as I need to get some kip as I work at HorseWorld on a Friday. But before I go, I saw Prof. Denton a few weeks back. I'd given up trying to convince them that natural methods work. So I wasn't expecting anything. I was gobsmacked when he asked me what I have been using - hot stones and chia seeds. He wanted to know all about it and was really quite animated about it.

Anyhow, must go. I'll look in tomorrow night. If anyone is on Facebook and wants to get in touch......message me I was just thinking, if you live far away from Bristol or on a limited budget. Perhaps you could ask for money as a Christmas pressie? Lou is situated in Whitchurch, easy for train and motorway, b&bs. My Christmas pressie to me is a £72 all over body hot stone massage. She has to 'pour' me back into the car after that...lol!

Crikey! Just reread this. Perhaps I should be her manager! My old work life raising it's head. Seriously, the sheer joy of being able to smile, laugh and stuff my face with food again. Instead of nibbling like a rodent! It's 1am and I'm gone! Night all!

[marshmallow69]

Hi Skwiglee, Thanks for your encouraging reply. I'll certainly look into this. I'm willing to try just about anything now if there's a chance it will enable me to be the sort of person I used to be before this nuisance of an illness struck. I'm happy for you that you have had such great success in dealing with the problem and I'm sure your reply will give hope to others on this site who are also suffering.

[Skwiglee]

Hi! I have to say that I have a very sore mouth today. But it's because I've been stuffing myself on boiled sweets Louise did do a bespoke course on hot stone massage, and she does have clients coming from abroad. So I'm not sure if a regular therapist will be able to do it. Not only has she fixed my face. But also my hamstrings, so I can now stand upright. Straightened my arms, so that they no longer permanently cross in front of my body. Now we are working to straighten my fingers. I don't know where you live, but I can guarantee that it would be worthwhile to come to Bristol for treatment. An overnight stay? Here are her details: catzcollege.co.uk/ also on Facebook xx

[marshmallow69]

Thanks for the link, Skwiglee. I live in the Edinburgh area and there are several places that do this kind of therapy. I'll try close to home first, but I've noted down Louise's details just in case. Re your sore mouth - do you also have Sjogren's syndrome? I find anything with a sugar content creates a painful, burning sensation in my mouth. Even fruit, which I used to love, is off limits now. Looking on the bright side, I suppose it helps me to stay slim and avoid too many sessions with my dentist, but I feel very cheated when I see others enjoying chocolate, etc.

[Skwiglee]

No, lol! It's purely from eating too many boiled sweets. Now that I can eat, I just want everything. Plus, I go around grinning like a fool......simply because I can! It used to take me an hour or more just to eat an ordinary sandwich. I was so miserable. By the way, Lou would be happy to talk to you, if you have any questions. Xx

[puary]

i have raynaud's and sjogrens, also a small mouth which most dentists complain about as it is difficult to see the back teeth. one dentist was sympathetic, used a special frame to keep my mouth stretched open to clean a tooth and everything was fine. sometimes dentists need to be understanding because having a smaller size mouth cannot be helped but keeping teeth clean is important, especially avoiding acidic foods. you can use a tooth gel and spray to stop gums becoming dry, including chewing sugar free gum can help.

[Ellenmac]

Hi - new to the site so sorry for sick a late response. I had the same problem but about 8 years ago discovered restylane injections. I go every 3-4 months, and it's extremely painful at the time, but the effects have been amazing. It has helped me get dental treatment, and it has given me a proper lip line. It is expensive, £250 a time, but it makes me feel a lot better about myself, and it has taken away that scleroderma look. Now, if I could only find a solution to my claw-like hands....

[marshmallow69]

Thanks for your response, Ellenmac. I have so many different things wrong with my health and am in constant pain. I doubt I could tolerate having regular painful injections in my face, but I do appreciate you trying to be of help.

[Skwiglee]

PS there is no pain with hot stone massage........it is sheer and utter pleasure when it's done properly. I don't 'do' pain. Xx