Is Your Rheumatologist Listening?

originally published 7/16/08

Going to the rheumatologist is a necessary part of life when you have arthritis.  We see a rheumatologist to monitor the state of our arthritis, to make sure we are under the proper treatment and to modify treatment, if necessary.  This helps us stay in control of our arthritis.  However, have you ever had an experience where your rheumatologist is just not listening to you?  Unfortunately, this does happen, but what can you do about it?

First of all, be very clear about your problem or situation.  Maybe the doctor does not fully understand.  I think we sometimes assume they know what we’re going through at that time.  We live with arthritis and it’s consequences everyday, but we don’t see our rheumatologist everyday.  They cannot possibly know how we are feeling unless we are very clear about it.

If that doesn’t work, take a step back and determine if you are the one being unreasonable.  Are you being stubborn or maybe asking for something that is out of the question?  Communication goes both ways. 

Sometimes, though, our doctors just do not acknowledge how we feel.  Maybe they think we’re lying.  I have actually been accused of that by a rheumatologist some years ago.  I was in so much pain and the lab work he ordered came back normal.  I was just reduced to tears.  Needless to say, that was the last time I saw that rheumatologist.

If you find yourself in a situation where your doctor is just not listening to you and thereby not taking you seriously, then maybe it is time to consider replacing your rheumatologist.  I recommend not taking this lightly.  You cannot just move from doctor to doctor because you do not get your way.  However, if you are being reasonable and think you have no other choice, then start searching for another rheumatologist.  You certainly do not need the added stress that results from seeing a doctor that does not care to listen or acknowledge your situation.

How Many Pediatric Rheumatologists are in Your Local Area?

originally published 5/28/08

Did you know that Juvenile Arthritis affects approximately 300,000 children in the United States?  Unfortunately, there are not enough pediatric rheumatologists to cover the demand.  It may not affect you as an adult, however, if your child, niece, nephew, friend’s child, neighbor’s child, etc., is one of the 300,000, it will affect them tremendously.  The problem is this: If a child has a form of juvenile arthritis and it goes undiagnosed for a significant period of time, the child may suffer the consequences.  It is very important that children are diagnosed as early as possible so the necessary treatment can begin.  Otherwise, the affected joint(s) may continue to sustain pain, swelling, joint damage, etc.  Later in life, this could lead to deterioration of the affected joint, which affects quality of life and may well lead to joint replacement, joint fusion or some other type of significant treatment.

How do I know this?  I was one of those children back in the 70’s.  For as long as I can remember, I have had joint pain, swelling, tenderness, etc.  In those days, if you went to the family doctor or emergency room, you were told that it was probably just a sprain.  For years, this occurred until I finally saw a pediatric rheumatologist who diagnosed me with Juvenile Rheumatoid Arthritis (JRA).  The problem is that it was undiagnosed for eleven years.  By then, significant damage had already occurred in the ankle joint.  I could keep telling my long story, but to get to the point, I had to have a total ankle replacement at the age of 30.  It was a long time coming, but that is an early age to have a joint replacement.

My point is that children need to be diagnosed early to help prevent significant problems down the road.  Will it prevent significant problems by 100%?  Surely not, but we owe it to our children and the children of this nation to help provide them the best care they can get. 

How can you help?  It’s easy!  Support the Arthritis Prevention Control and Cure Act.  It calls for more pediatric rheumatologists among other necessities.  The Arthritis Foundation makes it simple to show your support.  Just go to the Arthritis Foundation’s Arthritis Action Center and enter your zip code in the “Find Your Officials” box.  The resulting page will show your officials and will have an “Action Alert” box.  Just follow the links from that point on.

Just for kicks, try searching for a pediatric rheumatologist in your area.  You’ll probably be surprised to see that they are few and far between.  About a month ago, I checked for pediatric rheumatologists in Kentucky.  Unfortunately, I only found two full-time pediatric rheumatologists and they are both in Louisville.  The really sad thing about this is that Kentucky is the second-highest state for the prevalence of arthritis.  In other words, the Kentucky population has a higher percentage of arthritis than most of the other states.  However, we only have two full-time pediatric rheumatologists to serve the children with arthritis and many of those children will have to travel hours just to see the doctor.  Pretty sad if you ask me.