I am not an expert just a person who suffers with AS and I have asked and asked this question of Consultants and Doctors and not really got any clear answers, but sorry to be honest, in most of the people I know with AS, it has progressed.
My AS spent years attacking my sacroiliac joints and I didn’t notice it much elsewhere, although I think looking back it might have been elsewhere as there was a period of a few months when I couldn’t lift my right arm any higher than my shoulder, and another when my right thumb was constant agony, and my wrists used to play up all the time. But the other things I always put down to repetitive strain injury issues. To me the only thing which could have caused my back pain then was the outcome of the car accident I’d had in 1991, so I saw no connection with anything else.
But after a period in which I’d actually been much better for a while things suddenly and consistently began getting worse.
My sacroiliac pain had become constant, constant and a really loud distracting pain which is damned hard to think over, or concentrate on anything while I endured it. Yet no one could see that I was suffering externally.
But it wasn’t just pain either – it was a heaviness in the joint too. It felt like I was constantly carrying around one of those long civil war style pikes through my hip (about two inches wide), I could feel where it entered and exited and it pulled down lying heavily. It was an odd feeling.
Then I started noticing that it wasn’t just my sacroiliac joints hurting, it was the lower vertebrae joints in my spine too. It was travelling and beginning to work up my back. Of course, I was on no medication then, beyond steroid injections. If I had been I don’t know if it wouldn’t have progressed. But anyway it did.
It crept up my spine really slowly at first. Just aiming for the first two vertebrae joints, but then I noticed different things. Like my dentist commenting on the fact my jaw wouldn’t open properly, it used to lock and it started to really ache at times. I kept dropping things too I noticed. Even before my hands had started hurting, I began losing the strength of my grip and I’d think I was holding something but I wasn’t it would just fall through my fingers. I was forever dropping my car keys when I went out the door in the morning because my hands were stiff.
My wrists were really stiff and painful. I spent half my day trying to stretch them out they were in so much agony and the muscle just seemed to lock.
I started getting pain in my feet too. It was really hard to stand for any time at all and so I started using a walking stick so I had something to lean my body weight on so it didn’t have to rest on my hips.
I got really bad stomach pain too. I’d always had periods of it. Generally if something caused me to get worried. But now it was every day that I had really bad stomach pain and an upset tummy.
I lost a ton of weight too, I loved that bit, I went down to a size 8 in a couple of years. What woman doesn’t want to drop two dress sizes while still eating anything she wants?
I started getting really tired too. After about 2 o’clock in the afternoon I’d feel really sick and the room would start swivelling like it does when your drunk and I just felt like collapsing, though I never did collapse.
Then I started feeling really sick right from the moment I woke up. I woke up feeling like someone had beaten me up with a concrete slab the night before and I just wanted to be sick. I gave up drinking because feeling so ill any amount of alcohol made me feel really awful.
The spinning sensations I was suffering then became worse like a sudden rush of dropping fluid inside me. Like someone had pulled a large plug out of my heel and all my energy just suddenly drained.
At the same time the pain in my lower spine had progressed its way up my back, so by 2 pm at work I was in too much agony and too exhausted to even sit upright in a chair. I turned to crutches to walk with, I was in too much pain to hold myself steady using a stick.
I was a complete and utter mess, and on no medication except steroid injections, and still struggling to work, although by then they’d agreed I could get in at 10 am not 9 am, and leave at 2pm to work at home in a half lying position after this.
I was becoming an invalid… I’d accepted who I was and that this disease was part of who I was and its limitations were just me, I didn’t strive to be what I’d been, or berate my poor luck or anything like that… But when this period hit me, I was just living a coping life. I couldn’t think about anything longer than getting through the next hour of life because my life was so hard. There were no distant thoughts in my head. Pain and illness narrowed my view and horizons and limited my life in more than physical ways.
I thought I was dying and went to the doctors time and time again to try and find out what was wrong with me. Explaining things over and over in a hundred different ways in the hope that the new description would mean they worked out what it was and cured me. I knew it was no longer about my accident. That I was able to work out for myself…
I’ll be honest I think my next blog is a fortnight away. We have finally moved house, but the move has knocked me back a bit and it’s getting harder keeping up with everything. But the next chapter will come… and this is leading to my point of diagnosis.
AS is my burden, writing is my escape.
And if you are looking for the best help to improve your Ankylosing Spondylitis then for me it was the AS course at the Hospital for Rheumatic Diseases in Bath, UK. It changed my life (You can attend as a private patient or on the NHS).
My debut novel is due to be published 2nd May 2013 (writing fiction has been my preferred painkiller for years and now I can share my escapism characters). Sapphire Star Publishing are the publisher. If you want to find out more go to www.janelark.co.uk like me on Facebook or follow me on twitter @janelark