Hi, Just needed somewhere to introduce myself. Don't even know if I am doing this right but only one way to learn,

Anyway, I am new to this site but not to AS. First signs of it were at 6 years old, when I sat in the assembly one morning only to find that I was unable to cross my legs in the way that other children were. My knees just wouldn't sit on the floor the way that they did a day or two before. Never got that back.

I then had the pain etc at 11 years old, excruciating back pain.

My sister has Rheumatoid Arthritis so when I went complaining of back pain and the dragging pain in my legs, the doctor pretty much dismissed me, assuming that I was just scared that I had the same thing as my sister.

He wrote a letter to that effect to a rheumatologist when I was 15 only they wrote back and told him that after tests they suspected Ankloysing and wanted me to go back.

I was never informed of this and am now 43. I have had spells in wheelchairs etc and loss of mobility. I have the cauda equina syndrome, and now my hands lock, sometimes it is very painful to breath. It feels as though my whole body is riddled with this thing, right down to my fingers and toes,..

The stiffness goes from my feet right over the top of my head. Everything is an effort. I am now waiting to see a rheumatologist after years of seeing a neurologist, who quite frankly didn't know what to make of me.

I am appalled that I was never told what was wrong with me and that it was dismissed, I can only assume through the dented pride of my GP?

Anyway, I too find that exercise helps and I have had to try to help myself a lot of the years and find out what worked and what didn't.

Exercise works well for the day, however, if I do too much then the stiffness and pain is even worse the next morning, until I exercise again...but this in turn seems to set off the cauda equina syndrome.. So I just gave up for a while, only now the stiffness is worse, and the posture is very very bad.

I am no longer able to sit up in bed to read as it feels as though my ribs are being crushed.

One good thing that came out of seeing the neurologist is that when they sent me for a cat scan ( I also have epilepsy) they found that my skull was very thick.. Do any of you have this?

Thank you for this site.

It is wonderful to know that for the first time in my life I am free to speak of the pain without being made to feel as though I am some sort of a freak who is either imagining it or for the most part exaggerating ..

I used to absolutely love horse-riding and tennis. Sadly, I have discovered that high impact exercise is a complete no go for me.

I shall mull over this site and read what you have all written, For that I thank you now. I hope to learn from you as well.

Sorry, I have another question, do any of you get the pain and stiffness up the back of your head?

This is what causes me to get very tired.

I am assuming as well that we as individuals need to work out an exercise plan that is tailored to how the condition affects us ?

Sorry for the length of this post.

I am now 43, this showed itself from as young as 6 with the stiffness, and this is the very first time that I have actually managed to speak to others who know the walk..

Liz