Hi all, just a rant really.
I'm so disheartened by the nhs, a service I have worked for for over 10years.
I have had lower back pain for 20+yrs. Started as a young adult. Non specific really, thought I'd just laid funny or pulled something.
Over those years, I've had lots of times when I've been completely stuck, immobile, in a lot of pain. Always been told ' see how it is in a few weeks' and of course, it improves but never back to baseline. Life got busy so just got on with it I guess, any pain could easily be because I'd over done it, laid/sat funny.
I've had 4 full term pregnancies. 1 and 3 put me on crutches but was told spd (plausible but pain was always my lower back/sacrum/coccyx). Number 3 was the worst and I suffered after for 18months. Spent thousands on private chiropractor and osteopath and was all along told it was pregnancy related. I add, no xrays or scans during this time. Finally saw nhs physio who said similar, but by this time, I was more mobile, back at work and running about after 3 kids...no time to put me first.
Started yoga before number 4 and didn't have anywhere near the same pain, in fact, no typical spd symptoms or aggrevated back pain. Niggles in my back expected as pregnancy related.
Fast forward to now and I'm in constant pain. Morning stiffness, unable to sit, stand, lay for long without having to move about. My knee randomly started giving way an feeling like it was expanding from the inside (no trauma) so went to nhs physio. 18months and its better but still throbs for no real reason and feels iritated. Try to ask for an xray but seemed I did not meet criteria for it. Happened to mention my back pain again and wondered if it was more systemic. Physio agreed for a review under a new referral (which took another 5months) and sent me straight to the gp for tests as agreed given the history, vision and stomach issues, and now sciatic involvement, it could possibly be autoimmune (by now thinking ankylosing spondylitis).
Last week I had the results...elevated ena and specific ana but no raised inflammation and hlab27 negative. Immunologist reviewed the results and said they are of no significance as I don't have symptoms of those specific autoimmune conditions (ie lupus, mixed connective tissue disease etc thankfully).
But has got back to me today to say referral to rheumatology has been declined because there are no blood markers, so referred me back to physio.
I will mention that I have booked a private rheumatology appointment in a few weeks and will ask and pay for an xray/mri.
I just feel so disheartened. Over the years, when I've seen the doctor or physio, things improve marginally or life gets busy or trying to get some kind of scan/test takes too long so I feel it's never properly been investigated...more fool me as now I have daily pain and stiffness, can't get up off the floor or run after the kids. Even do online shopping as can't push the trolley round.
But because I have no blood markers, they can't refer me or just send me for an xray to actually look at my bones!!
From what I understand (caveat I am a physio assistant so have a little knowledge and know how to research) ankylosing spondylitis is quite often seronegative, as in, no blood markers. Yes I am hlab27 negative, but so are a large number or AS suffers it seems.
I just want answers really. If its not a skeletal issue, then I'll conceed and hang my head as I go back to the physio.
No wonder it takes so long to get diagnosed.
I absolutely understand the process, to an extent. There are people with awful conditions that need to see an already stretched service first, but I got in the head space to sort this out once and for all and just feel let down by a service I trust in.
It's just pants and takes a lot of strength to get through the day when I'm in pain and so busy and to keep focusing on the end goal.