Ankylosing spondylitis - anyone have it?

[NC28]

Currently on a waiting list to see rheumatology due to a 3 year history of worsening lower back pain (where my spine feels like it’s bloody fused into one piece of bone) and instep/ankle/heel pain (and the aforementioned feeling of fusion) so bad that I can’t remember the last time I walked normally.

HLA-B27 positive, which got my foot in the door with rheumatology, now on the long wait to see someone.

GPs thought are AS, as are mine.

Does anyone else have this condition? If so, were your symptoms similar?

I was 21 when my GP suggested AS. I’m also HLA-B27 positive. I’m 30 now, and have been diagnosed with fibromyalgia, however I have an MRI booked in a few weeks time which will hopefully give a more clear answer as to if there is any spinal fusion and I have AS, or if I continue with the Fibromyalgia diagnosis going forward with MRI’s if required in the future.

My diagnosis was only 2 weeks ago, 9 years after my original investigation. I try not to be sour about it, but I’ve been in pain for 13 years with my back, and I’m still in limbo. I also think I was overlooked as a 21 year old in terms of having a chronic autoimmune disease.

My symptoms mirror yours, alongside many others which I think contributed to the fibro diagnosis as there are so many fibro symptoms.

Push for bloods and MRI when you see your rheumatologist. Good luck, I hope you get the diagnosis and treatment you need.

Not me but my Dad had AS (and also rheumatoid arthritis)
His really kicked in in his 20s, but wasn't diagnosed until his early 30s. He ended up on quite a cocktail of drugs to control his symptoms, but remained fairly mobile until his 50s. He had his wrists fused at some point and ankle surgery.

His was pretty severe and having RA alongside didn't help, but he kept as active as he possibly could.. was a badminton coach until his 40s which I think helped tremendously. His back was the worst symptom for many years, but the meds helped a lot.

Good luck... it can be helped a lot :)

Thanks for replying @PicklesHome Fibro does seem to be a last resort diagnosis at times when no other condition is quite fitting the bill. Can I ask what your other symptoms were that tipped the diagnosis to fibro?

I’ll definitely request imaging at my appointment, I’ve had none so far and want to know what’s going on inside there.

@Sonolanona Thanks, it’s good to read that your dad had a decent quality of life for some time. I’m hoping I get the appointment sooner rather than later as (as you’ll maybe know through your dad), chronic pain is deliberating at times.

I had something similar 15 years ago - my doctor was convinced it was AS as I had a lot of lower back pain and pain in my hips, and inflammation markers in my blood (no idea what these were specifically) but the MRI I had showed I had two slipped discs in my lower back instead.

Yes, I have it, diagnosed at 21, HLA-B27 positive too, back pain but not on limbs, however had several episodes of uveitis, under control with minimal treatment so far and no bad flare ups recently. It is now called Axial Spondyloarthritis, still a mouthful! Have a look at the NASS website https//nass.co.uk/

I have axial spondyloarthritis, which is essentially the same thing. Ankylosing spondylitis is a subset where bone changes are evident on x-ray. I didn't have that but did have significant chronic inflammatory changes on an MRI.

I am hlab27 negative but have psoriasis, had 2 episodes of uveitis and am hypermobile so based on that and the MRI they made the diagnosis. Good luck with it - there is a checklist on the nass website that can help with getting an MRI I think.
I take anti-inflammatories most days and do a lot of specific physio and exercises/ regularly and so far I am doing ok. I did herniate a disc in January so that did add some additional complications but I see rheumatology every 6-9 months and can phone the consultant if I needed to in-between appointments but luckily have never needed to. It was a bit of a shock to get the diagnosis but I generally feel healthy and I often don't even think about it anymore!

I was referred for it by GP, I am hla b27 positive and have nearly all the symptoms but discharged without a diagnosis by Rheumatology because the MRI was clear. The National Axial Spondyloarthritis Society said the MRI can take years to show damage and suggested I seek a second opinion and recommend Dr Sengupta who is a leading specialist at The Royal United hospital in Bath. Didn’t get anywhere with getting a second opinion referral from the GP though.

Hi, I have Ankylosing spondylitis and HLA-B27 positive. Had this for 30 years now (!!!) and it took 9 years to get diagnosis, which only happened after repeat bouts of uveitis that the eye consultant said needed looking into. Asked if I had any back pain (lots!) and they referred to rheumatology. I’m on biologics which have stopped the inflammation so far, but I do have a lot of old inflammatory damage, SI joint pain and some osteophyte-disc complexes which are causing some bother. Having quite a bit of pain at the minute but I’m keeping moving doing a pretty active job full time. The pain is bad sometimes but always worse if I’m not keeping mobile. You definitely need an MRI, and fingers x you get seen soon.

@NC28sure, I have been gathering this list over the years and this is what I presented to my most recent rheumatologist.

Primary Symptoms:

• Chronic lower back pain (persistent, non-mechanical; worsens with rest, improves somewhat with movement
• Fatigue and low energy
• Brain fog and cognitive difficulty
• Extremely sensitive to pain (even light pressure or minor injuries cause disproportionate pain)
• Easily bruised or marked
• Feeling faint/lightheaded, especially when upright

Relevant Medical History:

• HLA-B27 positive
• Diagnosed with neurocardiogenic syncope via previous tilt table test
• Symptoms resemble fibromyalgia and/or axial spondyloarthritis (axSpA)

Additional Symptoms:

• Overactive bladder / urinary urgency
• Poor sleep quality
• History of ineffective response to general pain medications

Yes, I have this. I was diagnosed around 7 years ago, aged 35, after many years of symptoms and pain. I am now on biological injections and they have really helped. I still have flare-ups, but these are less frequent since being on the biological injections.

As someone else mentioned, the NASS charity is really helpful. They have lots of resources online, a forum, a helpline and regular webinars, etc.

I have AS.
My main symptoms were lower back pain, had it for years, but was always treated as a one-off issue. I also had other joint issues.
I’m now on anti-inflammatories. I’ve changed my diet. Do more exercise (Pilates /walking) and have regular physio, and do my physio exercises a few times a week.
This is keeping my symptoms / pain in check.
HLA-B27 neg. But changes showed on the MRI, hence the AS diagnosis.
Hope you get to see the rheumatologist soon. And yes, push for a MRI.

Yep, had it since I was about 18, finally diagnosed due to having private healthcare through work and seeing a rheumatologist when I was 38 as was fobbed off by GPs for years. I dread to think how many hundreds of pounds i spent on physio trying to fix a problem that wasn’t mechanical

My husband is waiting for a confirmed diagnosis of AS. He already has a diagnosis of fibromyalgia. Unfortunately he cannot go on anti-inflammatories as he had a heart attack a few years ago. He suffers with excoriating pain to his back and neck.

Thanks everyone for the replies.

It’s good to hear that some experiences are of mild symptoms with little flare up.

I’m currently in a position where I haven’t had a full night of sleep for >3 years, so I’m waiting on the referral letter every day (though I know it won’t come for a while). These stories of very long diagnosis journeys don’t fill me with hope though! Every day I spend the first 15 mins of my morning trying to roll over in bed so that I can get into the foetal position on my side in order to relieve some stiffness in my back before I can get up.

I somewhat hope it is AS, anything that they can firmly diagnose and put a treatment plan in place for would be fine with me.

Yes, @NC28 - I can relate to all of those symptoms. I hope you get some answers soon. After many years of symptoms and lack of diagnosis (and sometimes misdiagnosis), I found it such a relief when I finally got a diagnosis. I’d never actually heard of AS until I was diagnosed. The biological injections have helped me so much. I still have daily pain but (apart from when I have a flare up) it is manageable now.

It could be worth you contacting the NASS helpline while you are waiting for a diagnosis. They are so helpful and have done a lot of research about how it takes many years for most people to get a diagnosis. I’d also recommend you looking on the website - you might find some of the articles and videos helpful.

This page might be helpful.

https://nass.co.uk/about-as/what-is-axialspa/your-diagnosis/

I had a quick glance last night. I saw there are some podcast style videos which look good.

It’s good to see that someone can relate to the symptoms I mentioned. Getting into the foetal position is like going for a strong massage - a sort of “pain but good pain” feeling.

When I look at my own symptoms, the HLA B27 positive result and my age (I’m mid 30s, onset for this was age 31), I’ll be amazed if it’s not AS.

My Dad had this, he managed it with anti-inflammatories and exercises. If he had iritis he had to go immediately to an eye hospital. Otherwise, he led a great life, with holidays, walking, working, driving. He found sitting uncomfortable at times.

My dad had this and I feel im getting symptoms, I have costochondritis, rib pain, plantar fasciitis, low back aches I have scoliosis, general feeling of tiredness, weakness, what do I ask for when I see my doctor?