Hi lovely people
A strange one to help your week-end along!
The row of teeth in my bottom jaw have started to move. This has happened a few times in the past and has resulted in an abscess each time. The most recent infection was about 2y ago following radiation therapy for breast cancer. I was immunosuppressed and I reasoned this led to the abscess, although my dentist said at the time she thought my teeth had shifted.
No abscess this time - yet! - but my dentist is on the case and agrees that my teeth are on the move again and the pressure has caused the filling in a back molar to crack.
I've been recently diagnosed with EDS, but I wonder if anyone else has experienced this sort of thing?
Hope you all have a happy week-end.
I'm not sure if tooth movement and regular abscesses and infections are common with Lupus , but they are common lifelong problems for people with EDS.
Ehlers Danlos Syndrome , a connective tissue disorder which is most known for causing hypermobility and skin issues has 13 known subtypes , and many of them , especially Periodontal EDS , effect the teeth.
This is because the skin and tissues of the gums are not as tight causing regular tooth movement and earlier decay.
I could easily say that dental problems and hypersensitivity are my first remembered issues after joint dislocations. Probably because its horrible being accused constantly of not caring for your teeth from childhood when you know you clean them twice a day.
EDS sufferers can also have no , or very little, response to local anaesthetic , which isn't commonly known by dentists , which means we often suffer trauma during treatment and get scepticism, or are accused of Anxiety , when we complain that we suffer pain or are not numb during dental appointments.
Having a medical alert card to show to health professionals is really useful as it states it on the card for their guidance , you can order these from the Ehlers Danlos Society website .
Many EDS sufferers will have had too many , or crowded teeth, in their youth and not realise that is part of EDS , as we often have narrow jaws similar to people with Marfans Syndrome.
Regular jaw misalignment and TMJ also cause more tooth movement and extra wear and tear making us lose teeth earlier or causing cracks and decay.
Many whom have tooth correction with braces can find that their teeth do not stay straight or work themselves back across each other quite quickly because the gums are not strong enough to maintain the correction.
My daughter , whom also has EDS, will use a night mouth guard for life to help maintain her straightened teeth. A mouth guard at night can actually help improve dental movement and jaw issues for EDS sufferers in general as well.
We also suffer more with mouth infections , abscesses , ulcers and gingivitis because of loose gums allowing more bacteria to get into the gums . Coupled with a dry mouth from often inefficient release of saliva as the connective tissue in the saliva tubes may be lax. It leads to looser gums , looser teeth and more fillings or early extractions.
Drinking green tea regularly or using cool green tea as a mouth wash , especially after meals or certain drinks can often help reduce the number of infections.
It is important use a soft tooth brush , or childs brush , I've got a dinosaur, instead of a normal adult or electric toothbrush. Specialist mouth wash prescribed by the dentist is better than OTT mouthwashes but they often need educating about EDS before they will do that. You have to be very careful when you floss not to touch the gums or pull hard between teeth and use the thinnest floss you can.
Other illnesses that affect connective tissue like MCTD, Crohns and Ulcerative Colitis , or illnesses like Lupus and Arthritis, that may require regular use of steroids can find similar mouth issues occur because steroids can effect collagen production in a similar way to that found in EDS.
Less collagen = Weaker Connective Tissues = Weak muscles , joints , skin and gums, inefficient nerves , saggy tubes and valves = low body efficiency , low strength = more pain , injuries and infection.
Taking a daily vitamin and mineral supplement and extra Vitamin D and B 12 and eating more animal based protein in the diet can help with improving symptoms by helping natural collagen production in EDS sufferers.
Some people also take animal or marine collagen and biotin to help but there is no evidence that this helps significantly in EDS as yet.
Unfortunately, a vegan diet is one that people with EDS really need to sacrifice to maintain their bodies with the genetic issues they have.
Many chronic illnesses end up causing extra dental issues because of their effect on the general level of health of the sufferer and their effect on reducing vitamin levels in general as nutrients are consumed by the body much quicker as it constantly tries to heal itself and deal with inflammation.
Some conditions , especially cardiac and vascular ones, can be made worse by tooth decay and mouth infections , as constant high levels of certain types of oral bacteria can effect heart health.
Hope that helps , Bee
May I say what a great, comprehensive, informative answer. So much here resonates with me as well and so much I didn’t know about. Firstly I picked up on the moving teeth issue as my teeth are so jumbled now after being fine when I was younger. Secondly, the hypermobility and weak muscles that I’ve just lived with and then the shedload of other symptoms that I’ve never bothered to mention and just accepted. I’ve just put everything down to lupus and Sjogrens. Thank you and I hope it helps MEGS53 as well.
It is very hard to get an official diagnosis for EDS , especially Hypermobile EDS , despite the fact that the testing for it is very simple to do in a clinic setting.
Doctors , both G.Ps and Consultants , seem to shy away from making a decision on it , which us frustrating when it is a condition that can effect every part of your body because of the way it effects the connective tissue and how many other conditions and syndromes it can finally cause you to suffer from much earlier than most people.
I've suffered with it since birth and its effects but I didn't receive my full diagnosis until this year , I'm 50!
It is worth looking up the 2017 diagnosis criteria checklist on the Ehlers Danlos Society website ( and noting the skin measurement figures for Classic EDS on the EDS types page).
Do the Beighton and Brighton and Walker checks on yourself at home and mark down how many points you get for your age. If you score in or near the positive line , arrange a double length appointment with your GP and take in the criteria checklist for them to do with you in the surgery to get your diagnosis on your medical history. And tell any health professional you see including dentists, nurses , physio and all consultants.
If you don't quite match the criteria for EDS , possibly because of a lack of skin flexibility or fragility , it is likely that you would still fit the criteria of Generalised Joint Hypermobility Syndrome ( G.J.H.S) , this can have an equal impact on your pain , fatigue and mobility , it just doesn't effect the connective tissue in quite the same way.
The wear and tear and effects of both conditions can cause early onset arthritis, joints requiring replacement , dental issues and nerve issues like Fibromyalgia and effect the severity of the symptoms of other illnesses like Lupus , Endometriosis, and cause early requirements for eye and joint surgeries.
Thank you for your very detailed reply, as always 😘
I'm so lucky to have an excellent dentist who's pulling out the stops to help (no pun intended!). My lower teeth are making a determined move to the left (my weakest side), which is troubling her, particularly as it's leaving a big gap to the right. Can you suggest anything that might help stop/limit the movement?
I know I'm in for a painful few days - not just my mouth - when I wake up with my whole jaw and teeth aching, so am I experiencing a flare? My knee caps are moving much more now, too.
I do have crowded teeth and a narrow jaw, but as a petite woman of 4ft 11ins, I'm certainly not of Marfans appearance 😂😂😂 although I do have relatively long fingers and toes.
Anyway, how are you doing, Bee? Any success getting regular B12 jabs?
Take care and thanks once again,
The one recommendation that there is that seems to slow down the movement , and reduce the pain is to get your dentist to measure your mouth and make you a mouth guard to wear at night.
It helps in two ways . First, it can stop night movement of teeth by keeping them in place . Second. It reduces the amount your clamp your jaw down as you sleep , and night grinding and even TMJ ' clicking'. Tooth grinding , even if you don't know you do it us the top cause of morning flares in tooth pain in all nerve related conditions.
Its the possibility of you making very slight subluxations of the jaw as you move the mouth in sleep which often causes the extra jaw pain in the day and grinding can move the teeth .
Oddly , think about the position you sleep in . Make sure your head and shoulders are raised on cushions which also helps reduce Fibro neck and head pain and Circulation induced Migraine. If your teeth are moving to the left , cushion your head more so that your leaning to the right. The gums are often so loose with EDS or as people age that gravity and pressure can make changes in your tooth position.
The dentist can also give you a medicated mouthwash to use after tooth brushing with a soft brush called, Benzydamine. You don't use it every day only on days when your teeth are aching. Do not big vigorous in tooth cleaning or use an electric toothbrush and make sure the dentist takes extra care not to cause gum bleeding or bruising when they work.
Keeping your mouth as wet as you can also helps . Drink sips of water or green tea ( any flavour but unsweetened through the day. Try sucking Salivix dry mouth lozenges or a cube of fresh pineapple . Be careful eating hard or chewy food and try eating harder food to the back of the side of the mouth your teeth are moving to , as again chewing pressure can move the teeth back or forth. Your left in your case , this may also help strengthen the muscles of the face on that side.
Finally, try doing very gentle face , jaw and mouth rotating , isometric exercises each day . Find a balance where the exercise improves your mouth and haw strength of movement but keeps you feeling relaxed and relieved. Use a warm compress and warm ( not hot) drinks to reduce nerve pain from the jaw and very gentle massage near temples and ears and cheeks before bed to reduce Trigeminal nerve pain and overnight tooth grinding .
Try using light compression at the knees to help kneecap movement when you do general daily activity and dont kneel down , do squats or squatted positions, yoga positions that put pressure through a bent knee . Dont wear compression all day , especially when doing exercise to improve knee strength unless you wear a prescribed brace after an injury. Gentle walking , slow pedalling movements in a chair with kegs in front of you or on an exercise bike , tai chi balance exercises and swimming or walking in water all help increase muscle and joint strength and reduce knee cap or bone misalignment. Try a body pillow or knee pillow for bed keeping knees quite straight and reducing night pressure on bone positions.
You could get the doctor to check your hormone levels , increased progesterone and lower eostrogen has a loosening effect on tendons and muscles.
Talking to the best GP this week and hoping to have it written in to get shots two monthly. I'm 9 weeks past the last and already walking like a drunken sailor so I think he wilwill cooperate.
Feel free to private message me if you have anymore questions, or try a post on the EDS forum as well , they may have info on stuff I've not heard of.
Thanks for the very useful info, yet again.
I'm seeing my dentist in a week or so and I'll raise the points with her.
I had a Moderna covid jab yesterday and now i feel absolute 💩💩💩, no other way to describe it! Everything aches, as well as my mouth. It's time to dive under the duvet until I feel a bit more human. I could be there a while 😬
Thanks again, xxx
Take it slow and take care.
I had the Moderna too , and was bad for a week after it , not just flu like but a lot of pain in the liver area too. My husband was also lousy for a few days , maybe it being the dual vaccination made it worse.
I will be requesting the Pizer jab next time , as I've had 2Moderna now and reacted both times , which didn't happen with the Astra Zeneca ones.
Had my flu jab on Saturday and had absolutely no symptoms with that , not even the usual sore arm , thank goodness.
Hope you feel better soon , Bee
Thank you xxx
I reacted very badly to my first Pfizer jab (incl covid arm), but only minor probs with second Pfizer jab. Iwas fine with AZ
Going back under the duvet xxx