Jaw & tooth pain

Hi Beverley,

I've thought about getting one of those water-picks too, and your post has encouraged me! How do they work? Do you have to fix them on the tap or do they have some kind of reservoir?

I have some teeth that are very close together, like Shaq, and I have the same problem with the floss cutting into the gum and sometimes causing bleeding. I always used the waxed dental tape from Boots in the UK, which slid in and out easily. However, they seem to have "improved" the formula in the past couple of years, and now it sticks every time. They only seem to sell the basic, brutal kind of floss in Belgium so I can't find anything here either.

So sorry to hear about this, aitarg, and hope you can get some relief soon. The dentist isn't a bad place to start, but would you be able to get yourself to a maxillofacial surgeon? They're the real experts on mysterious jaw pain. Dentists tend just to take X-rays then tell you there's nothing wrong if they can't see anything on them.

This is the voice of experience, coming from someone who had several six-week attacks of excruciating upper jaw pain every year for ten years, and was told by five dentists in two countries there was nothing wrong. I also had endless attacks of sinusitis during those ten years. It ended up with a maxfax surgeon doing a very difficult extraction and scraping away some infected bone. He told me I was lucky to have avoided a bone graft! (That was 25 years ago and I've been fine ever since.)

This episode wasn't SS-related btw. Seven years before the pain started, a British dentist doing an unnecessary filling (the Brits are famous for that) had rammed a large piece of amalgam up between the gum and the tooth. It had finally fallen out a year or so later, but the maxfax said this would have been the problem, as it had opened up a channel for infection to get into the bone.

I know exactly what it's like. I hope you can find someone who'll be able to help you.

You're right, Lily: my excellent dentist is trying to find a specialist who will see me pronto. Unfortunately tomorrow is Thanksgiving and most non-retail businesses close from today until Monday. Dentist can't see any problem.

I doubke-checked my flossing technique & had it confirmed that we are never to yank the floss down directly onto the point of the gum between teeth. Just get it in between the teeth, then gently slide it down the edge of one tooth, wrapped around it as much as possible, then floss forward or back & up, repeat on other tooth, etc.

All I can say is that this is a better discussion than some of the ones we have in bronchiectasis regarding the color & consistency of our phlegm, lol.

I do hope you can get an appointment soon. Here in Belgium when a public holiday falls on a Thursday (e.g. Ascension day, which always has to be a Thursday) the Friday is automatically a holiday as well. However, I suspect you're a bit more diligent stateside!

Reminds me of my second dental malpractice experience, ten years ago. On that occasion, my dentist had persuaded me I needed a root canal on a lower molar that had been causing trouble on and off since my teens. Every time it got re-filled it started hurting again after a year or so. This time I'd had enough and wanted it out but agreed against my better judgement to a root canal and crown. I was unaware that the tooth had been broken right through the root for years, so should have been extracted long before this. Whether or not my then-dentist knew this too is a moot point. I don't know which is the worse option: he hadn't noticed the break, or he did know and went ahead with his money-making root canal scheme anyway.

A few years after that I ended up with an abscess on the tooth that was spreading rapidly under my tongue, with possibly life-threatening consequences. The original dentist wouldn't touch it. Another one, who gave me an emergency appointment, was so horrified he personally called a maxfax himself (unheard of here) and got me into maxillofacial outpatients the following morning. I had to hang around for four hours till a slot was found, but I was well-treated after that - a course of industrial-strength antibiotics followed by another bone-scraping job.

These two episodes explain why I always get at least two opinions every time a dentist proposes any kind of treatment other than descaling these days!

From what you say, I have the impression your pain might be in your upper jaw. However, if it's in the lower jaw, please keep a watch for any swelling spreading under your tongue or into your throat. If you see any sign of this, or experience pain or difficulty with swallowing (I mean more than usual) you should go to the ER immediately as there is a small risk of asphyxiation.

I hope you soon find the help you need.

Oh, it's going to be a fun & drug-filled holiday weekend, with muscle relaxers and Ultram/tramadol galore! GP 's nurse wants me to go back to the ER but there, too, will be holiday effect with as few people working as possible.

It is mostly and originally the bottom jaw so I'll pay attention to those issues, Lily.

Hi aitarg,

I hope that means you've got a specialist appointment for early next week. That might make it easier to bear over the long weekend. These things always happen at the worst possible times, don't they? I know what you mean about the ER. It would be the same here over the Ascension weekend. Still, if it gets really bad, maybe you might need to.

Thinking of you.

Nope, that's why I said It's going to be fun & drug-filled. Dentist couldn't find a single specialist's office open yesterday to make any appointment for any day, any month, any year. He can't call until Monday morning. This is Thanksgiving and for once the country stops, except of course for retailers. They close for today tho nowadays many open this afternoon or tonight, luring people away from home with the tease of low-priced items available only today. So people get trampled to death (yes) in the crush to get in, or they get in fist fights over the last $5 special thanksgiving crying muppet-barbie, or some other ludicrous item. Either way, no one will be in an office to take the dentist's call until Monday. It was a miracle that I got to see my dentist this week, but he's a sweetheart.

Hi aitarg,

I hope things are going as well as can be expected in the circumstances. Like I said, don't hesitate to go to the ER if you can't control the pain with the meds you've been given. You won't be wasting anyone's time.

Get well soon,

Lily

Dunno about the US but here in Europe the two are different. Descaling doesn't require local anaesthesia. Deep cleaning may.

Hi aitarg,

Sorry to hear this is still dragging on. I do hope you can soon get it sorted.

I can only say that I've worn a one-tooth upper denture for 61 years (not the same one of course) and have had SS for the last 22 of those years. I've never had a day's problem with the denture, apart from the usual "teething troubles" (excuse the pun) in the immediate aftermath every time it has to be replaced or adjusted as my mouth ages. It has to be said, though, that I only suffered severe dry mouth problems in the first 6-12 months of the condition. (It was my first symptom.) Although I have a very dry mouth during the night and occasional flare-ups of mild daytime dryness, dry mouth has always been the least of my Sjogren's worries. (Just don't get me started on the current eye flare-up, the worst I've ever had!)

However, it's worth noting that upper dentures are always much easier to manage than lower ones, and I think you said your troublesome tooth is in the lower jaw. This is for the obvious reason that it's the lower jaw that does all the work in biting and chewing.

Having now lost four of my original 32 - though I still have all my wisdom teeth - I've often considered how I'll manage if I lose any more. None of the losses were down to SS, btw. The one replaced by the denture was knocked out in an accident at age 12, one of the molars was lost as a result of poor dental hygiene when I was growing up, and the other two molars went down to dental malpractice (both involving root canals I'm sad to say).

Accepting more than one tooth on an upper denture would be a no-brainer for me. The actual plate is almost the same size whether it has one tooth on it or a full set, so if I can manage a one-tooth upper denture, I can hack anything else my upper jaw throws at me. The lower jaw - where I've already lost two molars and two more have been repaired so many times I occasionally set off metal detectors in airports - would probably be more problematic. I'd certainly opt to try a denture first though, to see how I got on with it.

Implants would seem to me to be the more logical solution for the lower jaw, but I've heard mixed reports from SS sufferers. I know the official position is that they're unsuitable for anyone with an AI condition, as their immune system would eventually pick a fight with the titanium bone implant. However, I've read accounts on these boards of some SS sufferers getting on perfectly well with them (though I don't know how long for). They're much more expensive than dentures, of course.

Although the above may be of some help to other SS sufferers whose mouths are less badly affected than yours, I suspect it won't really apply to you as your mouth dryness is extreme. I'm wondering whether you've asked your dentist's advice about this.

I'd also be interested to hear about other SS sufferers' experience with implants - for possible future reference.