Tag Archives: subluxation

Oral & Dental

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.


Which is exactly what my jaw has become apparently!  I went to bed one night absolutely fine about 10 days ago and woke up unable to chew anything on my right hand side.  The jaw joint doesn’t click or pop, it’s just really really painful and the pain goes up the side of my head and into my ear.  Super.

Made an appointment to see my Dentist yesterday thinking that I’d have to wear some kind of brace or retainer while I’m sleeping to keep the jaw joint in place.  But he doesn’t think this will help.  Most people with jaw problems develop them because they grind their teeth in the night and cause wear and tear arthritis on the jaw joint – gum shields help keep the mouth slightly open to stop the teeth from grinding.  But in my case the ligaments holding my jaw in place are lax which is making my jaw joint move, hence the pain.  A gum shield, he didn’t think, would make one iota of difference although he said we could try it as an experiment (which would cost me £50).  I think I’ll leave that for now as I’m stony broke.

The only thing he could suggest is resting the jaw as much as possible and only eating soft foods on the left side of my mouth, which is what I’ve been doing in any event.  If I could take drugs he’d suggest some anti-inflammatories and maybe a muscle relaxant for the spasm, but as I can’t I have to try rubbing some Ibuleve gel into the joint every 4 hours to try and calm any inflammation.  He hopes I’ve just sprained the ligament and it will settle down in a week or two.  Me too, because with chewing everything on the left side of my mouth my left jaw joint is now starting to hurt!

I currently feel like I am falling apart in spectacular fashion.  My hormones (and emotions) are all over the place – had a blood test to check for perimenopause last week but don’t expect it to show anything as it’s early days.  My back hurts me every second of the day and I can no longer find even one comfortable position in bed consequently I don’t sleep (don’t let’s talk about sitting and standing which have been an issue for years).  My fingers are falling apart.  My pelvis is shot.  My gums are receding.  My stomach is painful 24/7 and I have constant nausea. My uterus and bladder area is inflamed all the time, causing awful period-like pain and a need to pee a dozen times a day (and during the night).  The floaters in my eyes are so severe they interfere with reading and driving and drive me absolutely bonkers.  And to cap it all what little energy I ever possessed has bogged off too (I hope it’s in the Caribbean  and eventually comes back all tanned and refreshed from its holiday 😉 ).

My mast cells also seem to be having some kind of dicky fit.  I keep having what look like blistery bug bites all over my body, which itch like crazy.  Maybe they are bug bites, but I get them when I’m covered from head to toe so how do bugs get through jeans and wellies, or jumpers and anoraks and bite me under my bra?!  Then a couple of weeks ago a whole new and peculiar nose issue began.  My nose is inflamed and prickly, but with no itching, no feeling of being blocked and no running.  Occasionally I’ll have a massive sneezing fit for no good reason, but once it’s over my nose isn’t runny or blocked or itchy………..just inflamed and prickly.  I bought an air purifier for my bedroom, thinking I had developed an allergy to my dog, but it has made not one iota of difference.  My brain fog is also dire and my eyes constantly dry and sore. There’s something afoot, I just don’t know what.

I currently wake up in the mornings wondering what life is all about.  Am I depressed?  Probably.  Do I swing between crying and wanting to end it all, to telling myself to get a grip andPhoto of my dog stop being such a bloody whimp?  Absolutely.  My life currently feels like a pile of shite with no redeeming features and, if I’m being honest, that’s probably a fairly accurate description.  The only thing that keeps me going is my little dog, the fact that my parents are elderly and can’t manage without me, and the thought that some day the man of my dreams will come looking for me on his white charger brandishing a winning Euromillions lottery ticket.  You can add ‘delusional’ to my list of ailments 😉 .


Although I’ve had issues with both Ehlers-Danlos and Mast Cell Disease since I was a toddler, most of my symptoms really began in puberty, around the age of 11.  They took a further nosedive when I turned 40 and I believe changes in hormones were again to blame.  It’s no coincidence that EDS forums are full of women only diagnosed in middle-age, as their symptoms became intrusive and unbearable during peri-menopause and they went searching for answers.  Hormones have a lot to answer for.

I’m lucky in that my periods have always been regular as clock-work and fairly light, though unlucky in that they’ve always been excruciatingly painful and exhausting and I’ve suffered from menstrual migraines for donkeys years.  I’ve always put this down to EDS, though I’ve since learned that mast cells live in the uterine connective tissue so could also have been playing their part.

The week before my period, my joints become super flexible.  Every injury I’ve ever had has occurred the week before my period, including tearing my SI ligaments just walking the dog and subluxing my shoulder and consequently tearing the connecting ligament simply reaching for the tv remote.  I now take extra precautions leading up to my period by using all my joint braces/supports and not doing any kind of exercise such as weeding the garden or even doing any housework (just the repetitive movement of dusting can strain my arms and shoulder ligaments and make them sore).

This worked fairly well until this year, when I actively entered peri-menopause (I’m 45).  I may have unknowingly been in peri-menopause for some time, but as I’ve always had night sweats and insomnia as part of my M.E., and flushing due to MCAD, it was impossible to tell.  But this year my menstrual cycles have changed, ranging from 21 days to 31 days and anything in between, plus this month (August) I’ve had a “phantom period” with all the signs and symptoms of a period but no bleeding.  This, of course, has made it impossible to tell when my period is due, and because of that when to use my braces/supports and which activities to undertake.  As if life isn’t tricky enough!

This month I appear to’ve subluxed my right jaw bone in my pre-menstrual week.  I think I did it during the night as I sleep on my side and must have laid awkwardly on it.  It’s now painful to chew and yawning is a definite no no!  It’ll settle down, but is one more new symptom to add to my list.  In fact, I’ve never had a subluxed joint before until this year and I’ve now had three in the last four months.  It can’t be mere coincidence that these have coincided with my periods going haywire.

There is evidence that joints can become less prone to subluxation or dislocation as we age, as we naturally stiffen up and our range of movement decreases.  I’m finding just the opposite.  Although I am significantly stiffer than I used to be, my muscles and ligaments are much weaker, and this seems to be making me more injury prone, not less.   I have to say, though, that I welcome the menopause and finally being able to be rid of my monthly agony, though I’m aware I’m likely to face new challenges symptom-wise and I’m unsure how my EDS or Mast Cells are going to react.