Possible Ankylosing spondylitis ? Anyone with experience?

[Uponthehillside]

I’m 26 (well, 27 next week) and I’ve had ongoing lower back pain since I was 12 years old. I’ve had physio on and off and been told it was sciatica for years, then was told it’s not sciatica. During my teens I did have a blood test due to having reynauds which flagged up some antibodies linked to auto immune diseases. Doctors only spoke about this when looking into reynauds. As years have gone on the lower back pain has gotten much worse. It’s taken a lot of me pestering GPs to get it looked into. My flare ups now are so bad I cannot drive when I have them, getting out of bed is so hard after being in the same position for a long time. The pain wakes me up during a flare up (that’s if I actually get to sleep). It’s honestly debilitating and it’s been going on for so long now. My left leg has also lost sensitivity over the last couple of years.

I have finally been referred to a rheumatologist who mentioned Ankylosing spondylitis, I had no idea what this is and didn’t ask either as I was so relieved when she said I could have an MRI scan and blood tests to see, as previously I’ve been told it’s muscular and to have physio which so far hasn’t helped a great deal. I have googled the symptoms and feel this could genuinely be what it is, but I appreciate I’m not a doctor so I have no idea. The consultant asked me if I was worried whether it was this but I told her that in all honesty I didn’t mind I just want it to actually be something so that I can begin to treat it.

So I’ve had my MRI scan today and will get the results on Tuesday but I’m just curious about anyone else’s experience with Ankylosing spondylitis? From what I’ve read online it’s hard to diagnose.

Thank you for reading this!

Hi,

Have you had a blood test for the HLAB27 gene? This tells you if you have a higher chance of having Axial Spondylitis (the name used now for Ankylosing Spondylitis.

Have you had a nosey around this website?

nass.co.uk

Join Ankylosing Spondylitis UK on Facebook and just scroll down and have a nosey; you don't necessarily have to ask anything but you may pick up on something that is relative to you.

I started showing symptoms at 26 and finally got a confirmed diagnosis aged 40 which is disgraceful and shocking. GP's barely know of the condition yet more people have this than Parkinsons and cancer put together apparently.

If you google Talia Dean & scroll down, you'll get to a BBC News article. It's worth a read.

Apologies: new name is Axial Spondyloarthritis

@smilefile thank you so much. I had blood tests last week, the rheumatologist did mention this condition and said she was checking inflammatory markers, to be honest I can’t remember half of what she said (I had my 10 month old with me so was a little distracted) so I’m not sure if she did test for that or whether she was waiting for the inflammatory markers first. I did have an MRI on Thursday though and luckily am getting the results on Tuesday so I’m not sure if that would be where she’d make the diagnosis rather than bloods. I wish I’d taken more information in. She mentioned this condition and I only googled when I got home but had I known more about it I’d have questioned it more when I was there because it does look like a possibility. She did ask about sore eyes which I know is a possible symptom in some cases but I don’t have that, or psoriasis. I’m hoping as I’ve waited 15 years for someone to tell me literally anything about my back pain that there is some sort of explanation.
So far (without any imaging and purely from doctors looking at me) I’ve been told it could be: sciatica, my spine is too straight, one leg is longer than the other, one hip is higher than the other, muscle spasms and or just chronic back pain with no explanation.

Sorry to go on.

I will check out the website and Facebook group thank you so much.

It's fantastic that they're 'on it' now.

Inflammation markers: they're looking for inflammation around your sacroiliac joints/lower spine.

Sore eyes: Again, Uveitis is possible and zI get asked about any possible indications that I may have of this at my rheumy appointments every time I attend one. So far so good for me. Also iritis. Worth googling. My annual eye tests at the opticians take about 50 minutes and are very investigative. Incredible and taken very seriously.

Sorry, should have said it's the Ankylosing Spondylitis Support Group UK on Facebook x

(I also have Fibromyalgia and my hands hurt to type and I have brain fog so excuse errors... I get there in the end!!)

NASS is great, such an informative website. I have AS, first symptoms mid 20s, diagnosed age 47 after recurrent uveitis and worsening back pain. I think stress related to the pandemic put me in a massive flare. It's still not really controlled.

You can look up the NICE guidance on treatment. I'm about to try my third NSAID drug, they aren't really helping. Cardio exercise and yoga and being less stressed help me the most. I changed my working hours to help with that.

You have my sympathies. For me, AS is literally a pain in the arse. I can't sit at all without pain.

My Dad had this, was diagnosed after a weird virus aged about 40. Signs are lowrt back pain and stiffness, especially in the morning. He was on anti-inflammatory pills and lived a very full, normal life. He did get iritis semi regularly, which he had to get treated urgently, although this seemed to happen less over time.

@ruthypfdraper @RonCarlos thank you so much for replying.
My back pain has gotten increasingly worse over the years, I feel because of my age it was never taken all that seriously. It’s now in my hip which is excruciating during flare ups. I’m actually worried that they’re not going to be able to diagnose anything from the blood tests and scans and it’s just ‘mechanical back pain’ because I know if this is what they say then the treatment option is more physio which I’ve been going to for years and it’s not helped at all.
It’s also good to know if it is AS then the treatments available help. The pain itself is depressing but the frustration of not knowing exactly what the pain is has really taken it’s toll on me.

@ruthypfdraper can i ask how you got your diagnosis? Was it through scans and blood tests?

I had an mri which showed inflammation in sacroiliac joints and osteoarthritis higher up in my spine. This was after three episodes of uveitis in six months. Extended practice physio and ophthalmology had both mentioned AS by that point and I knew by looking at nass website that was it. I'll not lie, I've found diagnosis hard to come to terms with, particularly as it's now constant rather than occasional flares. It has led to a few lifestyle changes though, and I have a good rheumatologist and physio. I'm on a waiting list for hydrotherapy.

I am sure my Dad's was diagnosed with blood tests and an MRI scan so fingers crossed you will get some answers. Anti-inflammatories were brilliant for him. I forgot to say that he had psoriasis too so that had to be managed with creams. It sounds awful for you OP, I hope you get a proper treatment plan whatever it is

I also had blood tests. I don't have the gene associated with AS, but a small percentage of people with it don't. Nass website has info on diagnostic criteria.

DH has AS. He had it diagnosed privately in the end after a blood test for the HLAB27 gene was positive and he had consistent medical history of regular daily back pain.

He manages his with daily physio exercises and a healthy lifestyle. He occasionally needs ibuprofen for flare ups but he’s largely pretty mild. Hope you get a diagnosis and a good treatment plan soon.

Thank you for replying just thought I’d update as I had my follow up appointment today. Thankfully I don’t have AS, rather discs that have moved and some that have degenerated due to having been left for so long.

Very relieved it’s not AS but thought this outcome may help anyone reading this back who thinks they have it in future.

Still sounds painful though, hope you get some good care.