Amplified Pain Syndrome?

Instead of getting answers anymore, I think every appointment is just bringing new questions. Our rheumatologist is on board with this central pain sensitization or another name for it amplified pain syndrome (that is the one he likes to use). I have now done some research on this condition and the various programs. If my child was not just diagnosed last year (yes, 2012), maybe I would be more open to the program however, I just do not see that Trevor really fits into the amplified pain syndrome patient.  Many of the symptoms of amplified pain syndrome are:

Body aches

Joint and muscle pain

Abnormal sensations of burning

Tingling

Numbness or pressure

Headache

Chronic abdominal pain

Light touch to the skin causes pain sensations

Dysautonomia 

Trevor has joint pain (he also has arthritis!) and headaches (which he has had since he was 9- inherited from me).

I just don't see it. 

Trevor plays basketball and is as active as he can be. Every chance gets he is outside or staying after school playing football or basketball. 

Nemours is not really sure either.  They said they do not see active arthritis but want to see how things go over the next 4-5 weeks and then determine if he has this syndrome. Meanwhile, Trevor continues with physical therapy 2-3 times a week and he is in counseling.

BTW- his physical therapist was very concerned when I asked him about amplified pain syndrome. he said he would not have but Trevor in that category.

The Counselor

It is times like this moment that I reflect back on our "old life."....football games or basketball games, etc. we were always on the go! Life has definitely slowed down for us and that is a good thing. Things were moving way to fast. We were missing out on each other, our family! But now instead of after school football practices or basketball practices, we have physical therapy and now counseling sessions.  This is not something Trevor wants to do! In fact we almost physically had to put him in the car. His counselor seems to know teenagers and knows the last thing they want to do is talk to a counselor. Mr. Conti is his name and we hope he will work for Trevor as someone to talk to. He hopes to stress to Trevor that their conversations are between just the two of them.  Trevor told me it will just make him think of it more and he just wants to forget he has arthritis.  I know that but the doctor wants him to try this and I agree. hopefully once he understands the concept and gets that he only will come once in a while, it will be good for him and he may actually look forward to the times he will come.  Today was not one of those days. It was a day of tears for both him and me. I hate this disease and all of the things that the outside world doesn't really see that goes along with it.  These daily struggles of just trying to make it through each day and all of these doctor appointments. I'm tired of them and they are doing nothing to me I can only imagine that he is.  I still have that hope of that old life.....maybe one day, we will see it again.

FYI-they came out and he is ready to schedule the next meeting for next week! He's in a great mood! He loves the fact that he does not have to tell me anything and the Tony does not have to tell me anything....and that makes me happy!