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.