Sjogren's Syndrome and TMJ Dysfunction: Bad Companions

This year I was finally able to see my chosen dental surgeon - one who specializes in oral and maxillofacial surgery. After 30 years of rheumatoid arthritis (RA) and hearing again and again over the years that if my jaw was sore I must be grinding my teeth, I found out the real truth - RA had severely damaged my TMJ (temporomandibular) joints. Since the damage happened over many years, the adjustments that my body made in response to the joint damage have left me with good function, even though a CT scan shows a much different picture.

It took a year to get the initial appointment and I expected to be on the surgeon's list for arthrosopic surgery for another year but, since the doctor was unexpectedly given more operating room time the process sped up and I had the procedure early in March. 

You might wonder what happens in this surgery. Basically the doctor uses a tiny camera inserted through an incision in front of the ear and just above the jaw to see the joint, and then uses small instruments inserted just above the camera to remove damaged cartilage, smooth rough surfaces, and clean the joint space - even to the extent of repositioning the disc if needed. 

You would have thought that a smart patient with Sjogren's Syndrome would have a clear idea of what is necessary for good self care when they headed to a hospital for jaw surgery. I thought I was well prepared but I was remembering other surgeries on my hands or feet - the extremities where a nerve block is the obvious way to control pain. 

I'm sure my eye was this red

Of course when the operation is on your face that strategy won't work, and the doctor is likely to want to make sure that you keep breathing regularly while he works. As a result the doctor started with a very effective decongestant which dried my whole sinus cavity very thoroughly.

I took a tiny sample of Oral Balance with me for dry mouth - it was a lifesaver, as was bargaining with the anesthetist to be able to use some Evoxac prior to the surgery. I was afraid that a breathing tube combined with a dry throat would feel dreadful.

Given the way I felt coming out of the anesthetic, I should have taken the whole medicine cabinet of over-the-counter products I normally use along with me for afterwards.

my usual eyedrops

My sinuses were so dry that I was desperate for saline spray to help the with headache and pain. Thank goodness for the Evoxac that helped my mouth and throat. Who expected the effect on my eyes to be so devastating? After I came out of the anesthetic I was unable to shut my right eye - the muscles on the right side of my face would not respond for hours after. That meant my eye was agonizingly dry, and I had no eye drops with me. 

Where was a saline spray when I needed it?

At least I had some dry mouth gel with me

So the moral of the story is - if you have Sjogren's and need to have an operation involving a general anesthetic, and the doctors express concerns for your airway - take the products you commonly use to the hospital with you so that once you are reunited with your belongings you can use them. The hospital was able to get eye drops, but not fast.

The first title I thought of for this blog post was "Don't Leave Home Without It" but it needs to be Them. I plan to restock my purse to be ready for anything. 

At the Arthritis Alliance Symposium one of the rheumatologists needed eyedrops suddenly. 
What did she do?
Asked a patient.
She had a vial in minutes.

Not My Jaw Joint Too!

It's possible for rheumatoid arthritis disease to affect your jaw joint (the TMJ or temporo-mandibular joint). It shows up late; long after the RA starts, in the same way RA affects the cervical spine. 

The TMJ is that joint where your jaw is attached to the upper part of your skull

When I asked my GP doctor about the problem years ago he said there were three courses of action. One was just leave it alone, the second involved taking anti-inflammatories, and the third and worst to me was an injection into the joint. I assume that would have been a cortisone injection. It was a horrifying thought then so I took the "leave it alone" route.

Twelve months ago and a generation later I saw a rheumatology Fellow. He asked about the asymmetry of my face. (News to me!) He and the rheumatologist conferred and sent me for a CT scan. A few weeks later I got a bad news call from my specialist - actually the first call ever. He said that my jaw joint has severe degeneration on one side and moderate degeneration on the other.

So what do you do with that kind of news? I started with my dentist. He gave me a referral to an expert dental surgeon. It practically goes without saying that this surgeon has a waiting list. They told me it would take eight months, but actually by the time I see him a year will have passed.

In the meantime I saw another dentist who used to be a surgeon. He said that my function is better than he would have thought from the scan. Since the jaw joint deteriorates slowly over the years it can adjust to gradual changes and using a night guard for protection would likely be helpful. He also advised me not to eat apples or other large fruits or big sandwiches on hard crusty buns. 

Can't eat this apple no matter what happens

Two RA friends with jaw trouble have had special physiotherapy. Tense muscles contributed to their problems and now they can at least open their mouths wider. Another friend with pain issues was seen recently in group therapy at a pain clinic. Half of the people in her group had jaw problems, so it's a piece of luck that so far I don't see that happening.

My jaw does cause problems. The worst happen after a day in meetings or at a conference. All of that extra stress and extra smiling makes my jaw sore enough to cause pain and headaches. 

You'd think smiling would not put you in the penalty box

TMJ Disorders - NIH

Merck Manuals TMJ

Can orthodontic relapse be blamed on the temporomandibular joint?  Gives some background

RA. What Else Can Go Wrong?

Last week a rheumatologist I saw for a volunteer project commented that they rarely see people whose jaws are affected by rheumatoid arthritis (RA) anymore. That's good news for people with a recent diagnosis. It seems I'm having an epidemic of doctors telling me that prospects are better now than they were when I was diagnosed.

If you have aggressive rheumatoid arthritis it often happens that damage is to joints happens very early, before you and your doctor manage to get it under control. This can result in problems in your neck and jaw which may become noticeable years later because those joints are among the last ones affected by RA. After 30 years of living with it I am an obvious candidate and that's what happened.
 

Last month I went to the dentist, a different one, just for a consultation. He is a dental surgeon who no longer operates, perhaps because his hospital closed down their dental surgery program.He says that I am doing better than my X-Rays would lead him to believe. Luckily my pain and function is not too bad.  He says that he sees this sometimes in people whose joints have deteriorated over a long time.

Luckily your joints can adjust gradually during this slow process and find sort of a work-around.  That's what has been happening and I hope it keeps on like that in my jaw.

At a meeting I found two friends with RA who also have jaw trouble. Janey saw a physio and he said that the muscles in her face were all knotted up and he helped her to ease them.  Now she can open her mouth up to three finger widths and before it was only one finger. 

Donna actually has avascular necrosis in her jaw, but even with that a physiotherapist is able to help her somewhat. It's a serious problem, being unable to open your mouth. That makes it easier to let someone else put their fingers in your mouth.

The first step in dealing with jaw deterioration is the use of conservative measures. These include physio, Nsaids, use of a mouthguard at night, pain management if necessary.  

The jaw, or temporomandibular joint (TMJ for short) has a condyle, which is a curved disc that the jawbone fits into. There should be space in that joint. Mine is flattened and bone on bone - no cartilage. 

Side view of skull with TMJ

As a last resort you can have joint replacement but so far I use the above conservative measures with the added instructions to stay away from eating large things like apples and pears, and to avoid hard crusty sandwiches. Who would ever expect their bones to wear out before the other organs?

                                           At least he has a cardboard bed in the corner

Living With Joint Damage

There was a paper published in December about the juggling act that it takes for patients to manage rheumatoid arthritis when they are doing well or having a flare.  I can attest to the amount of work that it takes just to maintain your equilibrium, let alone make progress.

And it takes very little to make some of the balls fall out of the air - a cold, going for a holiday, a storm, non-delivery of your medications. Here our power was out because of the ice storm and I still have not bounced back from 2 days of freezing in the dark.

Maintaining a program that works is so important that I can even agree with Dr. Sanjay Gupta about establishing a routine and sticking to it with RA, even though (if you watch the video) after a shower, washing my hair, walking to work and exercising for 30 minutes I'd be done for the day since my whole stare of energy would be depleted.

Video from amazon.com

For me any change of regular practice is something I have to pay for eventually. As an example, before I went on vacation I had a systemic cortisone injection. That meant I had more energy and was more active during our holidays. We had a great time meeting Twitter friends, visiting family and seeing the sights but right after the flight home I developed sciatica symptoms. That made me start limping and the gait change aggravated the joints of my foot.  The result remains unpleasant.

I'll certainly think twice about cortisone in the future. It's a high price to pay for a nice vacation. 

To end the year I posted my five most popular posts ever. It's ironic that the post about Progression of Damage and Why It Matters shows up as the third most popular post. The fears of progression are an important reason for aggressive treatment and I found out just before Christmas that the joints of my jaw have severe damage. I have been complaining of jaw pain for years but my doctor and dentists disregarded those complaints until now, when they have reached the point where the CT scan made them marvel at my ability to function with so much damage.

So that's a good reason to trust your own knowledge of your body. Even though I feel that I am an experienced patient and that I am effective, their dismissal of the possible problem influenced me. I found a Patient Advocacy Group for TMJ.  Now I know that if you have TMJ (Temporomandibular) problems it is unwise to have extensive dental work such as crowns that may aggravate your TMJ.

This leaves me wondering what else may occur in the future. It's as if my body is a facade. The hated phrase "But you don't look sick" might start to be even more meaningful.

Of course it could be worse. My friend Patty is still hurting from seeing that the doctor had written on her chart "looks chronically ill" and that he has stopped asking how she is doing. It reminds me of the song by The Who. "Substitute" What you see is not all of it.

There are many active RA patients who go back to regular activities. Doing that is a great demonstration of effective new treatments and good outcomes. However if you hold off starting treatment or you have a misdiagnosis. the joint damage that occurs may make it very hard for you to run future marathons.