6th January 2006
Hi Zeph,
I really believe you need a new rheumy if he/she isnt listening to you. There is a site on here and I am sorry i dont have the link for AS sufferers to be the ones that the dr's study on. It is in America could be just the AS support group I am not sure I only went there once to read and forgot to save it to my favourites. If I can find it again I will let you know. If you contact them they will help you and give you the support you need.
I also used to get a very severe pain down my legs from my hips. Felt so deep boned that I thought someone was twisting the bone against itself and I would scream in agony and cry. I couldnt walk without dreadful pain and i havent been able to get on the floor for ten years. I too would not eat because the nausea was so bad and my tummy itself was so sore to touch. I would ask the rheumy about spondyloarthropathy. That is what causes my legs to be in the awful pain not the AS. the AS only affects my spine and neck.
Have they got you on any anti inflammatories? I started on celebrex went to methx and am now on Arava and have had to take prednisone now til my rheumy gets back from his holidays because he doesnt want my knee drained again and it is swollen like softball.
I wish there was something I could do to help you. I was 28 when it started with me. It does sound rather similar what you are going through.
Take care
Olivia :)
I really believe you need a new rheumy if he/she isnt listening to you. There is a site on here and I am sorry i dont have the link for AS sufferers to be the ones that the dr's study on. It is in America could be just the AS support group I am not sure I only went there once to read and forgot to save it to my favourites. If I can find it again I will let you know. If you contact them they will help you and give you the support you need.
I also used to get a very severe pain down my legs from my hips. Felt so deep boned that I thought someone was twisting the bone against itself and I would scream in agony and cry. I couldnt walk without dreadful pain and i havent been able to get on the floor for ten years. I too would not eat because the nausea was so bad and my tummy itself was so sore to touch. I would ask the rheumy about spondyloarthropathy. That is what causes my legs to be in the awful pain not the AS. the AS only affects my spine and neck.
Have they got you on any anti inflammatories? I started on celebrex went to methx and am now on Arava and have had to take prednisone now til my rheumy gets back from his holidays because he doesnt want my knee drained again and it is swollen like softball.
I wish there was something I could do to help you. I was 28 when it started with me. It does sound rather similar what you are going through.
Take care
Olivia :)