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Saturday, 4 January 2014

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.

7 comments:

  1. So, why shouldn't you get crowns? Because of the work involved or is there something about crowns themselves that aggravate TMJ?

    I often say that having RA or any other chronic illness is a full-time job. Add to this that the slightest change causes a domino effect of other problems and... well. It's enough to make you go back to bed for the duration!

    Gorgeous ice pic!

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    1. Here's the link so you can see where I found that info about crowns - but it is for people who already have a problem with their jaw joints I assume.
      http://www.nidcr.nih.gov/oralhealth/topics/tmj/lessisbest.htm I'll add it to the post too.
      I think it's true. I broke a tooth last May and since I got the crown and a new night guard the jaw problem accelerated dramatically. My dentist is good so obviously it didn't take much change in my bite to go downhill.

      This full time job and the domino effect does make me feel like going for the under-the-covers solution sometimes. But I would still have to get up to blog. :)

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    2. I've had any number of dental procedures that have changed my bite, whether it's fillings, extractions and lately, a couple of crowns. Overall, I found that my jaw has adapted to these changes. My TMJ, on the other hand, still comes and goes. Once, it was due to an infected tooth, but mostly it comes from my shoulder.

      When I read the article, I thought how easy it was for them to talk about avoiding dental procedures. If you have cavities or infections, you have to do something – the alternative is to extract all the teeth and get dentures. And that would certainly affect the bite, as well! ;)

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    3. I saw a dentist yesterday who says that with my Xrays he would have expected more pain and less function. Luckily that's not the case. He explained that when deterioration happens over a long time the jaw finds work arounds.
      Maybe this will settle down but much as I need and want to wear the night guard the dentist says if it causes more AM pain to leave it off until my regular dentist sees it again. Maybe an adjustment will help.

      I would not suggest putting off dental work if it's necessary. As long as the dentist knows what the issues are it should be OK. I'm just happy that I don't need any right now

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  2. I'm so sorry that you had a crash post-vacation. Not a very warm welcome, either!

    I am very fortunate that I go to a wonderful chiropractic clinic - they keep me ticking along (http://auntiestress.com/2009/08/18/ticking-along/) adjusting my jaw, ankle, wrist, etc. Not your regular bone crunchers, either, as they do a lot of soft tissue work. Over the years, I've learned to recognize when my ulna or radius gets jammed up in my elbow and know that it's time for an appointment.

    I've had more than my fair share of dental work over the years - ugh! As far as the crowns go, I think the trouble arises because of the amount of time required to keep one's mouth open. Tough for a regular patient - excruciating for an RA patient. I've found a mouth prop helpful (http://rheumfuloftips.wordpress.com/2012/05/23/a-mouth-prop/) - also my dentist will let me take breaks. It's crucial that the dentist knows about your RA.

    Now, if only a zipper could be installed along the side of my mouth to help make it bigger! :)

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    1. Thanks for your comment Marianna. That mouth prop might be a big help for a long time procedure.
      The zipper sounds good but would not be too pretty

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