I just wanted to see if there was anyone out there similar to me and to see if anything worked.
I'll try and briefly explain....
4 years I've had it... Deep burning pain in my left bum cheek (si joint area) and throbbing burning all down my left side/leg. Basically sciatica. I can't sleep on my left, I can't sit down for long and I can't exercise like I used to because my leg feels like it's going to explode.
I was in the NHS waiting system for 2yrs. During that time, a family member helped me pay private (£2k) for Si-joint (cortisone with local anaesthetic) injections. They didn't work.
Finally when I got my MRI it came back with bilateral sacroilitis, but more prominent on left side.
They've put me in the rheumatology box long sorry short. Diagnosed me with AS.
I've qualified to go on biological therapy drugs... Their idea is that it will reduce the joint inflammation which will reduce the pressure on the sciatic nerve.
I've been on Adalimumab for 4 months. Absolutely nothing. I'm now 3 months into Secukinumab (after 5 weekly doses at the start) and still nothing. In fact I feel worse than ever.
I still exercise to a comfort level because I find that doing nothing makes it worse; but if I do too much that also makes it worse. I also try and focus on strength & conditioning too.
I have a niggle in the back of my mind, that they've just put me in this box and I have to ride it out. Yes my joints might be a bit knackered, because I used to run a lot, but I'm not sure this is the cause of my nerve problem.
I've always thought I've had something called Piriformis Syndrome... But that would sit with orthopaedics I think not rheumatology.
I am a 39 year old female, I'm 5ft10 and now weigh a hefty 15stone - but at the start of all this I was 3 stone lighter, happier and healthier.
I don't like taking pain killers, I don't think they work. If I'm desperate ill take ibuprofen and paracetamol. Proper hefty painkillers didn't work for me and only made me feel terrible (Amitriptyline/Diazipam/Nefopam/Naproxen and more.)
I want to cure the source not cover it up, I'm so sad that I'll have this feeling on my left side forever... It takes over my life.
Thanks you very much for anyones input.