Like many people with Ehlers-Danlos I have my fair share of dental issues. When my adult teeth had finished coming through it was obvious I had quite severe dental overcrowding, so at the age of 11 I had four of my molar teeth removed. I wasn’t given a brace (kids weren’t in those days, at least in the UK) and I was just lucky that my front teeth grew reasonable straight afterwards, though they’re not perfect. By the time I was 15 all of my back teeth were filled. I have to admit, brushing my teeth wasn’t one of my favourite past-times (I always had something better to be doing) and I was continually told off for not brushing my teeth more often (it got done once a day and to me that was more than enough!). I now know that even if I’d brushed my teeth ten times a day they would still have been soft and needed filling. I never had any problems with the local anaesthetic injections, which always worked fine, but of course this was to change when I developed M.E. and my drug reactions began.
Floss wasn’t invented until I was in my late twenties and by then I was trying to look after my teeth more. The problem was, every time I flossed my gums bled. I was told to keep at it, my gums would toughen up, but of course they never did. As soon as I found out I had EDS, and that my gums were super fragile, I stopped ever trying to floss – my gums don’t bleed half as much but of course they’re not as clean either. I’ve looked into water flossers, but I know myself really well and admit that the novelty would last all of a week before it would be put in a draw and never seen again 😉 .
I do have quite severe gum inflammation though, almost all the time. It’s painful, makes eating difficult and causes tooth sensitivity. I’ve now religiously cleaned my teeth twice a day for many years so I’m not sure if it’s down to plaque (even though I have my teeth cleaned every 6 months at the dentist) or skin fragility. I started getting tooth sensitivity when I was in my mid thirties and have used Sensodyne toothpaste ever since. There are days when it’s really quite bad and eating ice cream stopped being pleasurable about five years ago *sob*.
I also have early receding gums, which my dentist told me was due to brushing my teeth too vigorously. But I knew I didn’t brush my teeth hard – I only have a child’s soft toothbrush and hardly use any pressure. Finding out I had EDS validated this and now he’s stopped telling me off 😉 . My Mum, who I’m fairly sure I inherited my EDS off, lost all her teeth by her mid fifties due to receding gums (they also told her she’d brushed them too hard!) so that’s something to look forward to, not.
I’m currently facing the possibility of a root canal on one of my molars. Due to my drug reactions I haven’t had any kind of anaesthetic at the Dentist for about 15 years now and have all my fillings done without any drug intervention which, remarkably, has been fine and not painful in any way. But a root canal is a whole other kettle of fish and I absolutely need my gum numbed. I’ve never had a mast cell reaction to local anaesthetics, but it’s still a scary prospect. My Dentist is also nervous, I can tell, so is going to try removing my current filling and putting a dressing on to see if he can get the tooth to calm down before we embark on the journey that is root canal hell. I’m not even sure I’d be able to open my mouth long enough to get one done – three minutes for a check-up and my right jaw joint is in purgatory.
About ten years ago I started to get blood blisters on the roof of my mouth. The first one was really quite scary. I woke to find this huge, purple lump about the size of 10p and had no clue what it was. It burst when I ate my breakfast and it felt like my mouth was literally filled with blood, eughhh!! I only get a couple each year, so I haven’t even mentioned them to my GP or Dentist, and just put them down to fragile skin. I’ve never been bothered with regular mouth ulcers though, so am thankful for that small mercy.
I started having subluxations in my right raw joint about three years ago. I sleep on my left side, and I think this pushes my right jaw askew in my sleep. I wake every single morning with the beginnings of a migraine due to pain from my jaw going up into my ear and then up into my eye and temple. I’m currently on the waiting list to see the hospital orthopaeds to see if they can make me some kind of brace to stop this happening.
During my bedridden years I had huge problems chewing and swallowing. I simply didn’t have the energy to chew much of the time, which is fairly common amongst people with severe M.E., and I lived for months at a time on liquid diets. As I’ve improved, though, this is thankfully no longer an issue. However I do still have some swallowing difficulties. I feel every day like my tonsils are swollen and/or my throat is sore (a common M.E. complaint) so every time I swallow it’s like having Strep throat which, after twenty years, you’d think I’d be used to but….nope…..it still sucks. And for about fifteen years now I’ve had oesophageal spasms. I can wake up some mornings and I just know I’m going to have an hour where my gullet goes into spasm and I’m going to spend some time retching. I don’t feel sick, it’s purely a muscular thing, and is seriously no fun. I don’t know if this is M.E. related (it only ever happens when I’m having a bad M.E. day), or EDS related, or down to my misbehaving mast cells – not that it matters I guess. It’s really unpleasant and all the retching makes my stomach hurt! I used to be able to take a muscle relaxant which really helped, but I became allergic so now I just dry heave and get it over with. Super.
As a treat to myself when I turned 40 I had my teeth bleached (I didn’t know about my EDS or MCAD then!). I’m a very smiley person (yes, I know you all find this hard to believe 😉 ), receive lots of compliments about my smile, and I didn’t want to start being self-conscious about smiling due to my teeth being all yellow and yucky. I just had it done at home, using trays made up by my dentist, though I had to use the bleach for sensitive teeth as the regular stuff made my teeth ache! I used the bleach every night for 6 weeks and I just wanted to say it all went really well 🙂 . My teeth were sensitive for about a month afterwards but this did settle down, and for someone horrendously chemically allergic I didn’t react in any way to the bleach. Knowing everything I know now about my teeth and mast cell disease I probably won’t do it again, but I just wanted to mention that it went fine for anyone who’s thinking of having it done. And I can say “cheese!” with my newly cleaned, slightly-less-yellow-if-not-altogether-pearly whites.