Ankylosing spondylitis - can it be mild?

[Cocomaymay]

Hiya,

For about 10 years I’ve been having pain flare ups with no real known cause. This involves lower back, groin, bum and hip and leg pain that’s lasts about a week and moves over these areas. It’s a burning dull annoying pain. It gets better when I move and ibuprofen helps but it wakes me up at night and I struggle to get back to sleep. I’ve got 2 boys under 3 so I’m exhausted.

Doctor initially thought it was sciatica but a physio has ruled it out. I know I shouldn’t google but ankylosing spondylitis has came up on searches. However I wouldn’t say the pain demobilises me completely so I’m not sure my symptoms are severe enough for AS. Can AS be mild?

Im awaiting a rheumatology referral so just curious as I don’t want to waste anyone’s time. Thanks.

I would go back with the positive blood test and ask for a second opinion. These were my Dad’s symptoms.

From what I've read women tend to get AS milder than men. Which is of course often ignored as it's seen as a 'men's disease' as I think the prevalence is 4:1?

I am HLA-B27 positive and have had flares of lower back/hip/buttock pain since my early 20s. It can completely seize me up, and gets better with movement. Sometimes it affects one side, sometimes the other. Comes on for seemingly no reason. Disappears equally as suddenly. I was sent for x-rays to check for AS, but it came back that I have scoliosis (already knew this - I have had slight scoliosis since I was 13 or so and it has never caused me any issues). Anyway, I was dismissed at that point. I still think it sounds more like AS, but not sure if it is worth pushing for an MRI. Anyway, I think it can be quite difficult to diagnose, even with the positive bloods.

Sounds like you definitely need an MRI! Have you had any associated problems like uveitis? I had the same history as you and it was a nasty uveitis flare that got me a diagnosis. I don't have the gene though.

In research I think so. Women may be more likely to be fobbed off though! I wonder what actual prevalence is. My rheumatologist told me the non HLA gene cases tend to be milder.

My husband has AS and HLA-B27 and was in a lot of pain when diagnosed. Found sleeping hard. Woke in the night and had to get up etc. GP offered some painkillers on prescription after scans etc.

We researched AS and found Professor Ebringer from UCLs research. It recommended a change in diet.

Husband cut out a lot of food initially and slowly reintroduced food. Ebringer mentions eating just steak, tomatoes and drinking wine to start. Dh has found several things that trigger it - bread (he doesn’t eat bread at all), sugar (he eats minimal), and other carbs. He didn’t eat rice, potatoes or pasta for a very long time. He rarely drinks now. Sticky rice is okay. He has never had prescription painkillers and now knows when he has eaten something he should have avoided. He still has kefir, kombucha and natural yoghurt regularly. He has used these for years (before you could buy them easily in supermarkets).

The nhs doesn’t and won’t agree with this approach but it worked for him. He hasn’t been to the gp in over 10 years at all. If you saw him you would have no idea he has AS, he is very fit, active, looks more like a regular, lean gym goer. He doesn’t do high impact exercise - so he swims over running. Cannot do team sport for risk of contact but weights, cycling indoors, rowing indoors is all fine. He is in far better shape than most people his age (in their 40s).

https://www.stopas.co.uk/ankylosing-spondylitis-my-story

Yes, I get recurrent uveitis - that's why I had the blood test for HLA B-27 and the x rays. In fact I am having a uveitis flare at the moment. I might go back and try again for an MRI then. I have actually been referred to the rheumatologist for suspected sjogrens syndrome also, been waiting for appointment for 10 months, but if I ever get there I'll try asking them.

I'm really surprised you don't have a diagnosis with all that going on.
@umbrel thanks for sharing. It's great your husband has had such positive results. I have tried various diets but struggle to stick to anything - complex reasons behind that. I have felt guilty in the past for not doing enough to help myself but am being much kinder to myself these days.