Ankylosing Spondylitis Support Group

Hi, I'm new to this board. I was diagnosed about 3 years ago. During the time when I was first diagnosed it was hell. My hips hurt so bad and my hands wrists ankles feet. I was put on Remicade as soon as my insurance would pay for it. I did feel like I was getting better but about 6 months into treatment I started having neuro problems. First I developed a drop foot and a month or so later I had what were diagnosed as (2) TIA better know as mini strokes. I thought I was going to die. My pain had subsided to a degree in other parts of my body but now my problem was bigger. My husband and my mother absolutely insisted that I stop the Remicade and felt it was responsible. (My OBGYN also felt it was a good idea to stop it) I did stop and sure enough neuro problems all but disappeared. Sounds all well and good i went for about 18 months with only minimal pain and stiffness in the morning. A real period of good health. I have other things that are not helping me out, I'm overweight, I have hype-mobile joints, high cholesteral and a few other things but nothing major. Long story longer I woke about a month ago stiff and sore and it has not gone away. MY right hip has a searing burning pain it and my collar bone hurts. I went to Primary and he have me pain pills that make me very very tired. I cannot get into Reumotologist for 1 month. I really don't know what he is going to do anyways. The collarbone thing is new. My whole right side hurts from my neck down to my toes and sometimes my left side hurts also. I want to scream and sometimes I do usually at someone who does not deserve it. I feel like my doctor my husband my mother and everyone I tell how I feel think I should just shut up and deal with it quietly. My doctor actually said "you know this is chronic. What do you want me to do? HELP ME thats what. Boy am I ranting I'm sorry not a nice way to introduce myself. I'll start reading maybe some support will help me deal better.
Posted on 10/03/09, 07:10 pm