Dentists !!!!!!!....... I was looking for answers and some advice; however I left the surgery non the wiser !!!!!....Need to rant !!!!

[wartsandall]

I'm fortunate that my lips are still quite full,...... but I have noticed that my mouth seems to be getting smaller and I can't open it as wide.....Today I felt like the dentist was going rip my mouth apart; and he was repeatedly asking me to... OPEN MY MOUTH WIDER !!!!!!!..When he finally took his gloved hand out my mouth I managed to tell him I had Scleroderma...... It is well written in my dental records...... so he doesn't really have an excuse that he didn't know !!!......I told him that I am very concerned about my receding gums; a small blocked salivary gland and a tight band of over granulated skin on the inside of my cheek...all my dentist could offer was a blank expression and that he would see me again in 6 months....although in his favour;.. he did say that he will keep his eye on things.....Does anyone else have similar experiences ??....or any advice for a dry mouth and skin tightening... X

[Yorky]

Ask to be referred to a Dental hospital, I was referred by my dentist. They take Scleroderma really seriously at the one in Leeds. I am always told if I have any pain in the salivary glands I am to contact them immediately! I have an annual scan of the glands. They don't have a cure, but are helpful with ways to keep the mouth moisturised. There are quite a few different gels your dentist could prescribe, they all help a little and tabs which can stimulate saliva. I have been prescibed Nystatin to deal with thrush, Pliocarpine to stimulate the saliva and Betnesol soluble tabs to help with the soreness. Also there are mouth exercises which you can do to try to stretch the mouth a little. Can't remember where I got my copy from, but you could try the RSA. Best of luck.

[wartsandall in reply to Yorky]

Hi Yorky, thank you for your answer. I will certainly look out for facial exercises, so that I can try to stretch my mouth a little x take care x

[Irene55]

For the mouth and face exercises you could contact the Royal Free hospital in London. When I went to see Professor Denton his nurse gave me a very good leaflet with exercises that I do every day. This site also has some which are almost identical but without the diagrams on the Royal Free leaflet.

livestrong.com/article/1812...

Hope this helps, it has helped me a lot.

[SandraMarie]

I understand how you feel. I've actually stopped going to the dentist (which concerns me a little) as my ability to open my mouth wider is worsening all the time, and coupled with the constant chest infections from Bronchiectasis, I'm very conscious of smelly breath and don't like anyone at all getting too close to my mouth. Hope you find a solution! This reluctance to commit to diagnosis seems to follow across the board, be it doctors, consultants and now dentists. It makes what is a very lonely condition, even lonelier. x

[wartsandall in reply to SandraMarie]

Hi SandraMarie, thank you for your answer. I also have a minor bronchiectasis, and I agree with your comments that Scleroderma is a very lonely condition.......... In my experience...;" Joe Public "..... have never heard of the disease and you do feel very alone.......... I have even had a dispute with my doctors receptionist over the flu vaccine......I tried to convince her that I had a chronic health problem ie/ Scleroderma and bronchiectasis, and that I NEED... to have the flu jab.... but hey ho.......I might as well bang my head against a brick wall....... these individuals need to have an insight or an education into chronic health conditions such as Scleroderma and bronchiectasis x

[Madge51 in reply to SandraMarie]

Know exactly what you mean about bad breath. Zmints have an ingredient that is a great help with this as it kills the bacteria in the mouth that causes it.

[Yvonda]

I had to have all my teeth pulled 2 years ago.Thankfully my oral surgeon was familiar with scleroderma. Unfortunately my mouth had already shrunk so much that there was no way to make me dentures. They couldn't get the plates in my mouth to make impressions.I have to cut up even hot dogs on buns because I can't open my mouth wide enough to bite into it.I also have dry mouth problem and haven't had any luck with the gels and mouthwashes so i keep a glass of crushed ice close at all times. it helps some but not a lot.

[dorothy69]

first of all, when i go to a new doctor/ dentist, i always give them a letter that i write explaing my medical conditions and a copy of the medical breakdown ( off the web) of each of my medical problems. when they come in the room they are fully aware and if i have to draw it out in crayon, i don't go back and look for another doctor. as far as the mouth issues, i to am at that point, so it does take longer to get dental work done. i am a lotion/salve freek, and can't get enough, so i start " lubing" the corners of my mouth about 1 week before my dentist sees me so he does not crack/rip them while working. also drink penty of water in that week to help hydrate your mouth. there are also gels that they can put in and on the area that is being worked on. also they need to rinse your mouth alot more to keep it moist. if the dentist knows what he/she is doing and understands the conditions you have, this is basic stuff. the big thing is more time in the chair, but with a little extra time, you can get through it.....hope this helps.

[wartsandall in reply to dorothy69]

Hi Dorothy, thank you for your comments.....I will definitely take your advice in regards to the preparation you take prior your visit to the dentist. .....I have small cracks at the corners of my mouth which have developed since my latest visit to my dentist...... I have been applying Blistize mouth ulcer cream, and this has helped soothe the split skin....,,,,,, I need some work to replace a bridge,.....this is because my gums have shrunk and exposed the metal work due to a dry mouth.... I'll keep in mind your advice to keep the mouth well hydrated prior any dental work.............Do you have any tips on keeping the mouth moist during the night ??...

I have a really dry mouth..... and I tend to snore really loudly... I'm convinced my dry mouth contributes to my snoring..... My husband will wake me and give me a sip of water so that he can get some sleep x lol x.....

[SandraMarie]

Dear Wartsandall, it should be on your medical notes that you have a chest condition, therefore you automatically qualify for flu jabs. On the other hand I'm refusing one this year as I'd like to know how it's ok for us to have them, when they normally say not to if you have a chest infection. We Bronchiectasis sufferers have them constantly, and according to my notes they contain 'Haemophilus Influenzae' that sounds like a flu to me???

[wartsandall]

Hi SandraMarie, I strongly agree with you.....I don't understand why every year I have the same battle to get a flu vaccine...I was also considering not bothering getting immunised.........have you always had bronchiectasis, or was it diagnosed after your raynauds and scleroderma ?.......my bronchiectasis was confirmed last year; 10 years after my initial diagnosis..... I was becoming more and more breathless and had chest pains, especially when the weather was cold, foggy or damp..... I had a CT scan and the bronchiectasis was diagnosed...... I had an inhaler for a while, but I haven't had any problems this year.... how are you affected, and how do you cope ? ,,,,, take care x

[Madge51]

How awful for you. There is absolutely no excuse for the dentist not familiarising himself with the effect of Systemic Sclerosis and Scleroderma. Sjogrens, which goes hand in hand with both conditions, is the thing that causes me the kind of issues you describe. There is a brilliant leaflet about dental care in these situations: my GP got it for me.

It recommends that you put plenty of emollient on the corners of your mouth prior to treatment. It also states that if the services of a Dental Hospital are available, there will be experts there who will have more experience & empathy with sufferers and will handle your treatment much more sensitively. I'd seriously consider changing my Dentist if there was no accommodation of my condition.

[graygirl1]

Hi wartsandall,

Sorry to know of your discomfort with your dentist. I had a very understanding dentist who understood my condition and how it affects the mouth. I have moved to a new area and have just met my new dentist. I think I am going to be fine with him after just one appointment. I have big problems with my teeth, gums and bones in my mouth seems to be deteriorating. I used to have a problem with rigid jaws and gritting of the teeth but discovered that was caused by the Quinine tablets I was taking for cramps. That was discontinued and those symptoms went . As for the dry mouth, I have an on going battle with it. Some medication can cause dryness like Amitriptyline tablets which I take for pain control. I also have a huge problem with excess sweating of my head and face, so bad that I was becoming unsociable as it was so embarrassing to go out. I am trying a new medication which helps a lot to reduce the sweating but it makes my mouth even dryer than usual. I don't have any pain but yes, people who suffer with Raynaud's and related conditions do tend to have a lot of dental problems. I was prescribed artificial saliva spray and take it with me when I go out. It helps a little.

As far as I know, dentists know about autoimmune disorders and the effect on the teeth, gums and bones in the mouth. My optician was able to tell me how Raynaud's is affecting my eyes and referred me to an eye specialist so your dentist should be able to be more helpful. Was he having a bad day?

You may have to see another dentist. Good luck for future visits to your dentist.

Graygirl1