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 was suspected of having AS with the 'mild' level of pain you describe, and in the same places, and for a few years. But I didn't have any inflammatory markers in blood so they said it was unlikely.
Eventually the third physio I saw noticed that my spine is really straight at the top (ie very little thoracic curve) and it's likely this causes a knock on effect from upper back right down to pelvis. So not AS at all! They can't fix it, but knowing that it's postural is really helpful because exercises, stretches, massage etc all make a difference.
So I recommend trying a few physios and ask them to look for any postural abnormalities.

But in answer to your question, yes, given they thought I might have it with symptoms just like yours, it seems it is possible for it to start mildly.

@Gingerwright thanks for the reply and advice! I’m hoping they can at least run some tests to rule anything sinister out. However would you only show positive for any markups during a flare up? It’s so hard to predict when it’s going to be at its worst.

I’ve just been getting on with it but surely I shouldn’t have aches and pains like this so often in my early thirties (and since my early twenties).

Hope you’re coping ok with your pains too. It can’t be easy. ❤️

It's honestly pretty manageable now I know what it is. I try to think about my posture all the time, and do lots of pilates/stretches. I rarely take paracetamol to get to sleep any more!
Interestingly mine started hurting in early/mid twenties too. I imagined that was because up until then I was young and supple enough not to notice the effects of the non-curved spine! No idea if that's right though.
Good luck getting a diagnosis, whatever it is. Hope it's something like mine which you can manage and won't get worse 🤞

My dad had AS. When I asked the GP about it they said a feature of it is it the aches being worse in the morning.

I hope yours isn’t that but if it is my Dad’s was manageable with anti inflammatories and exercises. I forgot he had it to be honest.

I have AS. Pain is always better with movement (a key indicator) but move too much and fatigue sets in. It's supposed to be worse in the morning but for me that's not always the case.

Most people with AS test positive for a certain gene. The rheumatologist told me that those without the gene tend to have it milder (this is me).

Nass website is a great resource. I learned a lot about self management from there.

@blessedarethequichemakers thanks for the reply. Yeah I definitely feel really uncomfortable and annoying pain when sitting down or in bed and have to move around to lessen it. I’ve got blood tests booked in for tomorrow so fingers crossed I’ll know either way. No one in my family has it. It may be just posture related but I guess there’s no test for that so they have to rule other conditions out first.

@DorritLittle sorry to hear your dad suffered with AS but thanks for sharing your experience.

@Gingerwright thank you for all these really helpful details!

I had symptoms from early 20s too. But diagnosed in late 40s after a massive (stress induced) flare. I used to seize up for weeks at a time then be absolutely fine.

I find heat to be the best way to manage the pain. Also eating well, exercising, finding ways to minimise stress.

My sister has ankylosing spondylitis - she was diagnosed after several years of intermittent pain. She does still have pain and some flare ups are worse than others, she is also a weightlifting personal trainer and probably the fittest person I know! It's proven to be more manageable so far than she worried about when first diagnosed.

@blessedarethequichemakers thanks for the advice and sorry to hear you’ve been through all that. I didn’t realise stress is a trigger! I’ve recently went back to working full time while I have a nearly 2 and 3 year old and my boss is on garden leave. I’m only 5 months in to the new job so have been pretty stressed. Maybe if related this explains the latest flare up. I was awake at 3am and had to run a bath to help one night so you’re right the heat really does help xx

@ClassicHummus wow your sister sounds incredible. That’s amazing to hear that if it turns out to be that it’s manageable for some people. Xx

Stress has a huge impact on physical symptoms. For me, it was lockdowns, kids not coping well, and work pressure. I now work fewer hours, swim and walk as much as I can. I took up a hobby that gives me a great diversion.

AS is literally a pain in the arse. Self management is so important - but finding what works for you can take a while.

@blessedarethequichemakers thanks for sharing your some of the things you changed to help you cope. It’s great to hear such a positive take on this. Do you know what they look for in blood tests? I think I’m getting a variety of checks done to see if the referral is definitely needed but because I’m not in a flare up it will be interesting to see if anything comes back tomorrow. Xx

I'm not sure on the blood test. Likely they are looking for inflammatory markers. The first time I went to gp mine were 'normal' but that can be the case with AS too. They might be checking for HLA-B27 gene but suspect only rheumatology would do that.

in case this is useful!

My DF had AS. He was diagnosed in his twenties, and in the brutal fashion of the time, was told he would be in a wheelchair by 30. He hadn't had DC by then & was advised not to.

Luckily my dad tended to listen to no-one (a mixed blessing) and blithely ignored all of that.

He was a avid walker, always on the go so that helped. He had 4 DC, and did not require a wheelchair ever. He did however become quite stooped with curvature of the spine early on, which was noticeable. This lessened as he got older & was less noticeable. In fact his symptoms & pain greatly reduced in later life.

I'd definitely follow up on your symptoms with your GP / get a referral but don't necessarily assume AS.

Thanks @blessedarethequichemakers . Got the bloods done yesterday so will hopefully hear back in a few days. I have a feeling they will come back as negative and then it’s back to square one but at least it rules things out.

Thanks @EarringsandLipstick your dad sounds like some guy! Amazing how when you’re determined to not let conditions take over what you can manage. Thanks for sharing. In typical fashion I’ve felt so much better this week and in a way I keep thinking is it worth getting checked but during the times it’s really bad it gets me so down. I think it’s a mix of being sleep derprived and guilt as I end up going so slowly with my two buzzing boys x

All blood tests have come back as normal. Mixed emotions as I’m happy there’s nothing sinister but also a bit disappointed that I still don’t know what’s going on. Not sure what to do next, if I should contact the GP again for further support or not. I’m not in a flare up at the moment though so still feel a bit achy/tired muscles but I’m now starting to wonder if I’m over reacting 😔

Maybe worth keeping a diary of symptoms you can take to GP? There's an app called chronic insights made by a chap with AS. I think it's free. Or keep it simple with ratings for your most frequent symptoms?

@blessedarethequichemakers that’s a really good idea thanks. The doctor has left the physio referral in place so hopefully that will come through soon! I don’t want to waste anyone’s time but this is the furthest I’ve got having a GP consider my symptoms in years so I don’t want to drop the ball and go back to scratch x

@Cocomaymay did you get to the bottom of this?

@Cocomaymay

Echoing the above poster and wondering how you are getting on?

I got diagnosed with Axial Spondlyloarthritis about a month ago after going to the GP with back pain. It's similar to AS in that it's inflammatory, autoimmune, pain and stiffness in the morning that is often eased with movement but I think the main difference is that ankylosing spondylitis causes damage that can be seen on an x-ray (mine were normal) but axial spondlyloarthritis shows up on an MRI.
My blood tests also came back normal from the GP but as I have psoriasis and lichen sclerosis which are autoimmune, I got referred to rheumatology and for an MRI. Next step is physio and a follow up in 6 months or so. I find sitting for too long isn't good so I'm trying to keep as active as possible, doing my stretches every day and weight training 3 times a week to keep muscle strength to support my dodgy spine!

I have AS, have had it donkeys years. Blood tests are only useful if samples are taken during a flare, if you're otherwise well they won't find anything. I was diagnosed from MRI evidence, my consultant feels that's the only useful way to do it. If you get it diagnosed, ask for a referral to the specialist AS physiotherapists in your area. They will give you a decent programme of exercise to slow ( and sometimes reverse) the progress of the disease. At my latest review, my flexibility is better now than it was 5 or 6 years ago, they do know their stuff.

Also look at this website:

nass.co.uk/

I have the lower back/glute/sacro/hip pain, and it’s been consistent every single morning for last 7 years. It goes after 30 mins or so once I’m up and about but comes back after prolonged walking or standing. I get pain in my feet for the “first morning steps”, random pain in my heels, random elbow, knee and ankle pain, stiff neck for years. I am HLA B27 positive but the MRI recently on whole spine and pelvis was “normal wear and tear” so I’ve been sent packing. Debating whether to go back to GP. Spoke to a NASS advisor who recommend getting a second opinion.